|Timestamp||Name||Your UCDavis email||How does the text circulate?||What is it about, empirically? (What is being studied as the object?)||What is the main argument and goal of the writing?||What method was used? How was the data generated?||Discuss a passage (citing page number) that inspired you or frustrated you||Pose two open-ended questions for the class|
|5/19/2013 15:51:25||The author is a professor and write her article around 2010. Her audience is most likely ethical philosophers, medical professionals who have the option to participate in clinical trials, other scholars in her field, people with or those affected by cancer. She promises in the introduction to show the biased and unethical nature of clinical trials. The conclusion states how trials are setup so that individuals have less importance that those who are not as sick. The text would have enemies in pharma companies that claim their trials are ethical and doctors that follow protocols without questioning them as Jain sees fir. Citations are used to legitimize and back claims about numbers or to give more background to previous studies or events.||Jain talks about the ethics of RCT cancer trials, also known as double blind trials and decides that it is unethical because it's success depends on a certain number of people dying and isn't concerned with the people as individuals, but numbers. It is located in America and compares differing cancer trials is history and the general way they (mis)treated patients.||Jain argues that cancer trials do not consider patients as individuals only numbers. The problem is then individual variations don't always get factored into treatment options leading to less success. The argument is explicit and she gathers evidence using differing treatment options and their dis-concern for patient welfare. The argument is robust and draws on differing moral positions on commonly stated responses. The argument could be challenged for her lack of comparison to alternative options. She states that current trials are unethical but does not provide any alternatives. One could say that current trials at least give patients hope of survival. Concepts include the way we treat people who are going to die, how money influences treatment for the those who will die. Health is defined as not having cancer that is treated by chemo or modern treatments. Health is used to justify unethical treatments. A desperate universal notion of human nature is assumed based on the deadly conditions of patients and the horrid corrupt treatments.||Data comes from ethnography and research into people with cancer. It is concerned with how people with cancer act based on her observations into the types of treatment options and patient discomfort level explored. Data is analyzed through their relation to unethical treatments and exploitation of desperate peoples. Assumptions include thinking that desperate patient lives have more value to those who are willing patients and oversee's people tested. She notes the way trials assume individual variations don't matter or they will be cancelled out in a large enough trial assuming that one can filter variations. Trials also assume that people should do the studies to save the lives of others. People are grouped based on their stages and types of cancer and experience with technologies on differing levels of clinical trials. She values American life of the sick over other lives of the sick. She assumes that the US medical system is flawed and that treatment options that she feels are ethical or humane. Data to strengthen the text would include arguments from the opposing side or other treatment options or diseases as a baseline to know comparison for treatments and survivals.||To be sure, the RCT and its use to test chemotherapy...it when people talk like that, it makes me feel bad, and it’s too late for me.” (98)|
This passage was frustrating because it places cancer patients at the center of the blame. As mentioned in another paragraph, placing blame on patients remove responsibility of the reasons people are diagnosed with conditions. I enjoyed a cancer patient's perspective of being dismissed in the media and reduced to a number. I had never thought about the implications of portraying cancer trials in both practice and the media in this way. Focusing attention of cancer on the patients and treatment rather than prevention allows large corporations to continue their practices at the consumers expense. Jain hints at this point but never explicitly states this which would have felt more compelling to me. She states that clinical trials help American's understand medicine the way pharmaceutical companies want Americans to understand it. And they are framed so that people think they are objective and safe when in reality many that are funded are skewed and do not consider the ethics of patients based on their ability to have cancer. It helped me realize unfair treatment in the cancer industry. I had always assumed that the people were dying anyways and at least they would have hope that treatments could be used. This paragraph attacks that view and shows how patients feel guilt into trials by feeling blamed for cancer.
|How do RCT trials compare to previous styles of treatment?|
How does using ag fields as the basis for clinical trials effect the efficiency or ethics of the trials?
|5/22/2013 13:49:20||Jain is an anthropology professor at Stanford University. This particular article was written in the winter of 2010. One can infer that this article was written for an academic audience, because of it’s publication in an academic journal. Jain promises to explain her concept of “the mortality effect,” through the case study of clinical trials in terminally ill cancer patients. This sounds like an incredibly depressing article. I assume that the enemies of the text are the pharmaceutical companies that administer and benefit from this process, while the friends of this article are the cancer patients that might receive placebos and the ‘short end of the stick.’ Citations are used throughout the text as both footnotes and general research references.||Empirically, Jain studies the ‘death timeline,’ and the logic associated with the ‘binary’ life/death thought process in the patients to help investigate the role of clinical testing (RCT) through the case study of cancer patients in American clinics. By looking at RCT as a structural process that treats cancer patients as ‘material objects,’ Jain attempts to research ‘how cancer is lived and treated.’||Jain argues that the ontological system of cancer treatment and research have crafted particular ‘dying bodies’ in medicine and our society. Constructing the terms of hope and ‘futurity’, and how terms of hope have been institutionalized through clinical testing and medicinal practices, Jain explains how cancer patients rely in the future even though they don’t necessarily have a future. Jain also explores how these protocols and systems of treatment effectively shape the ethics and culture of ‘dying bodies’ in our society. Jain argues that the cultural connections of how cancer, death, and recovery are represented in our society are obscured by the multi-million dollar industry that profits from the treatment of cancer patients – regardless of whether they live or die. Jain explains the behavior and social-cultural implications of disease and illness.|
This is the first time I’ve ever read, heard, or learned anything about ‘the culture of cancer.’ I definitely never thought of looking at it the way Jain presents it. I think Jain is inventing concepts.
|Jain uses a multilateral combination of ethnography, interviews, and statistics. Beginning with statistics, Jain helps support her argument by explaining the different numbers of deaths to illustrate how bodies are used to create a sense of martyrdom for terminally ill cancer patients. Jain dives in to the literary accounts and the history of cancer as well.||“The RCT asks cancer patients to undergo hardship for future patients, for a slim hope of a cure, or to do one’s bit for science and humanity. One person described to me how her mother participated in a trial for years, collecting and freezing her waste, explicitly as a noble endeavor done in the interests of future generations.” (Jain 102)|
The RCT offers the opportunity to have one’s disease and death stand in the service of a higher goal.
It brings almost a military glory to an unfair, unfashionable death. (Jain 103)
A few days ago, I woke up from the sound of my phone ringing. I set my phone as my morning alarm every day, and after a few groggy presses of the snooze button, I finally manage to shut off the incessant ringing of my alarm-phone and sat up right. It’s a morning ritual, kind of a fight of sorts.
By using my phone as an alarm, I also inevitably end up checking my texts and Facebook after shutting my alarm off too. I don’t like being bombarded by social interaction that early in my day – especially before coffee, but I can’t fight it.
The other day, as I turned off my alarm and checked my Facebook, I checked a message from my mom on Facebook. The message told me that our long term family friend, neighbor, and mother-of-my –friend, had passed away from cancer.
She had only been diagnosed a few months prior.
Clearly I have no respect for brevity, but this event really brings this article to life for me. Drug treatment and chemotherapy construct such false realities of hope for cancer and terminally ill patients in our society. Pharmaceutical companies are incredibly invested in death and the sobering falsehoods of mortality that they have influenced the way our society views death, which was once something incredibly natural and innate in human culture. Pharmaceutical companies changed the way people look at death. Money might not be able to buy happiness, but apparently it can buy hope.
|1. Do you agree with the idea that deaths in clinical treatments benefit future patients? Why or why not?|
2. Do you know someone who had cancer? If so, what did they think about hope and how cancer influenced their perspective on mortality?
|5/22/2013 15:18:48||This article was written by Lochlann Jain and published in the journal Public Culture in 2010. In the introduction, Jain introduces the idea of Randomized control trials (RCTs) and how this can be used in cancer cases. Jain uses information from various case studies, and uses citations in the form of footnotes. It appears that this article was written for the benefit of other academics, as it is purely for research, and Jain works hard to make the point that he is not arguing for a change, but merely presenting facts from research.||The object studies in this article are the randomized control trials, and their relevance to cancer cased. These trials essentially take a group of sufferers and split them in to different random groups. These different groups are given different treatment systems for their condition, and the subjects of the trial are not told which treatment they are getting. Jain mention the RCTs in various areas across the world, and makes the point that patients often need to travel if they want to have access to a particular treatment or trial. In this study, Jain compares the issues of funding, whether it is going to actual scientific help for the disease, in this case cancer, or whether the funding is going towards the idea of hope.||Jain makes a point of claiming that she is not arguing for any direct change in this article. She does not suggest any alternate method for RCT’s or even really argue that they should not take place. She does, however, bring to light some of the issues with RCTs, and how they can negatively affect patients. One issue she brings up is funding, and how a lot of money must be garnered in order to perform a trial that, in the case of cancer, is unlikely to be conclusive. In addition, she mentions that it is very difficult for a patient to get access to a particular treatment after trials are performed, as these trials are rarely conclusive. Cancer patients have a very hard time getting any treatment, or indeed any direct benefits from these trials at all. The key concept here is that “science” is not the conclusive analysis that people expect it to be in this context. Science is instead something very uncertain and also very inaccessible to most people. It also requires quite a bit of risk and sacrifice, even at the expense of people lives.||This article draws on other studies, which documented the results and responses to RCTs. It also draws on interviews with people who have been trough these trials. It gives account of both patients and doctors, and attempts to look at the issue from all angles and perspectives. I think that more personal accounts would have strengthened the text, as it would help to get a more well-rounded idea of these trials, as well as their roles across various cultures. Overall however, I feel that this article managed to give a view into the hardships and heartbreaking stories of these trials and still look at the issue is a fairly objective manner.||The passage I chose was on page 89. This section discussed the questions that the TroVax researchers posed answers to in order to give potential subjects more information on the trial. One question asked what would become of a patient who is involved with the trial and is placed in the placebo group, only to find that the TroVax treatment worked for those in the treated group. The researchers’ solution to this was that, if at the end of the trial TroVax is found to be an effective treatment, those in the placebo group would be permitted to receive the treatment “following regulatory approval.” Jain points out that people with this form of cancer are as low as 5% for 5 years. This was concerning to me in that it doesn’t seem that people would ever reach that point. Placebo subjects would likely not survive to the point where they could receive the treatment. In this way, the random selection of the groups seems somewhat likel gambling with people’s lives. It brings up the question of morality with these RCTs.|
Are RCTs moral?
How do you balance the issue of morality with the need to obtain data about an illness?
|5/22/2013 16:04:35||According to the footnote "The Mortality Effect" was written by S. Jain and published in Public Culture by the Duke University Press. This allows that it is indeed an academic paper, as they all seem to be, and aimed at anthropologists, not medical professionals. This paper seeks to deconstruct the accepted method behind cancer clinical trials and the assumptions that these trials are based on. This deconstruction is fulfilled throughout the paper and the conclusion offers a possible solution.||This paper is a study of cancer clinical trials. This is a large scale comparison of many cancer clinical trials that span nations and the globe, there is no mention of a specific area of study, only that cancer clinical trials are the focus. It seems to focus on the last half of the century of cancer research, quoting studies done as far back as 1947 and as recent as the early 2000's.||The main argument of this paper seems to be to unravel the assumptions behind cancer research and treatment. The main assumptions it looks at are the ideas that treatment injury is preferable to cancer injury, that cancer patients are already dying and therefore needing agressive action, and that this aggressive action may cause injury, but that the injury it causes is not recored or legitimized. It points out that there is no definition in clinical trials between deaths from cancer and deaths from treatment. This lack of definition is allowed to continue by the commonly accepted idea that the RCT method of clinical trials has necessary evils associated with it, but that it is the only way to obtain facts. These facts are begot without reference to the human life and suffering that it cost to create this facts, which is where Jain takes major issue with the hegemonic use of RCT as a medical research method. Jain aims to break the hegemonic acceptance of this idea of death as necessary for knowledge to be gained and facts to be found; she unravels the societal norms that allows this necessary death to permeate the clinical experience of cancer.||Jain used the classical method of ethnography to collect her data. It seems to have been collected through a combination of interviews and the research of previously gathered statistical data on success rates, ie life and death rates, of previous clinical trials pertaining to cancer. It was not explicitly stated where this data came from, however the paper was extensively cited therefore it is plausible that the citations contain the origin of the data used in this paper.||"RCT logic reflects such a structuring principle of our time that some of its key paradoxes barely register: two groups compete, one wins. It’s the logic of war: two sides competing for who can kill and injure the other; it’s the logic of sport: two sides competing for goals, points, or marks." (Jain p.101) This comparison of cancer clinical trials to war was shocking to say the least, as anything that compares medical treatment to warfare would be. In a way I find this comparison intentionally shocking, but potentially misleading as it seems to be bringing up the underlying idea of competition, which one could argue is present in many areas of our society, from college admissions to record contracts. I know this is painting in broad strokes, but the wording is intentionally emotional, Jain is trying to elicit an emotional response. Aside from my issue with the emotional manipulation, the idea is potentially helpful if it helps future researchers see subjects as potential lives saved, not potential deaths to increase the amount of data collected from the study. Studies that deal in numbers of deaths will inherently drift towards the impersonal as a way to deal with the frequent and commonplace loss of life, only perpetuating the cycle. To break the cycle patients need to be first and foremost patients, humans with lives and relationships, not data.||Why is cancer the disease of choice here? How does the ambiguity of cancer influence this paper, as there was never a working definition stated of what cancer is?|
|5/22/2013 17:28:33||S. Lochlann Jain wrote: The Mortality Effect: Counting the Dead in the Cancer Trial for "Public Culture" in 2010. It appears to be mainly written for an academic audience. The author writes about her analysis of the culture of cancer re:how cancer patients are often used in trial studies via (RCT-Randomized Control Trials). She uses many citations referencing notable people in the field of cancer research, oncologists, and cancer patients their caregivers and families.||She offers her analysis of the politics, history, and culture of cancer treatment in the U.S. an analysis of how cancer patients are often used in trials or (RCT-Randomized Control Trials) often knowing they are going to die from the type of cancer they have regardless if they participate but also many of the death statistics of these patients are counted in the trials when they is certainty of death regardless, hence skewing the data for further production of a new preventative cancer drugs initially focusing on: the Oxford Bio-media questionnaire and subsequent RCT.||The author argues that some treatments and statistical data gathering for experimental cancer treatments are presented with skewed data when using RCT as a method of proving new and effective cancer treatment, because typically utilizing this method requires the death of patients in one of the trial groups and that because many patients are in latter stage cancer anyway that these same patients destined to die anyway make the statistical data for that particular group polluted.||Interviews with oncologists, cancer patients, caregivers, and family members along with noted academic scholars and some scientists, provided the basis of her analysis. She attempted to gather a wider base of cancer treatment perspectives from a broad base of people knowledgeable in their particular field. I think it was valuable that in the text conclusion she made a point of noting that the "deaths of one group enable or justify the treatment injury of the other."||On page 116, I thought it was eye-opening to read how often cancer patients are used as guinea pigs for experimental treatments with radiation and chemical poisons".....I think I had heard and have known for some time that often the "treatment" is what kills a patient faster than the disease itself, but the author here provides some compelling arguments to support this theory. Sadly she also pointed out via a therapist she had interviewed that often a dying cancer patient will spend the last 36 hours of his or her life with a medical doctor whom they have only known for that short amount of time. This combined with RCT's and the money making aspect of the pharmaceutical companies engineering polluted data in order to get their latest drug on the market is despicable! Again to me, this just illustrates more of what Foucault discussed with respect to "Bio-power" and the management of people and technology. In this instance the author demonstrates how certain institutions keep power over the cancer patient’s body via "nation state" health regulations and/or pharmaceutical companies with little or no oversight.||Question #1: How would you determine a method for data collecting that would ensure “clean” data absent using already dying cancer patients as part of the “RCT”.|
Question #2: Do you think Oncologists today are doing everything ethically possible to provide accurate statistical data, along with treatment options to patients with terminal cancer?
|5/22/2013 21:39:29||This text was published in 2010 by Duke University Press, and aims towards academia and medical professionals. I can infer the audience through the subject material and the way the author writes about it. Jain writes about clinical trials and explores the ways in which they came to be, and how they are practiced in the united states. Jain states in the introduction that she wants to look at the timeline and the 'life and death binary' that control trials propagate. The citations are placed as footnotes at the bottom of each page, rather than interrupting the text. After reading so many texts in which the citations are incorporated into the text her footnotes were an obvious difference. It made me focus less on the people she was citing, and more on the writing and conceptual material.||The article is about clinical trials in the United States. I am assuming it is a recent study as it was published recently, in 2010. She looks at the way clinical and control trials for cancer cures are understood, and justified within our medical institution. She makes a comparison with medical practices of the 19th century, and how they would not conceive of this practice we observe where individuals are 'sacrificed' for future generations, and for science. She observes and writes about this shift in thinking about what makes effective and 'good' medicine, and in our current times, death is a large part in finding a cure for such fatal diseases as Cancer.||Her main argument, although slightly cynical, was not to argue for or against clinical trials, but instead to look at how they are 'produced', and if there could be better and more effective methods that have not been explored. She uses medical evidence and statistics to show how many deaths occur during these trials, but also in patients who chose chemotherapy, or no treatment at all. She also explores the risks of chemotherapy, and explains that there are instances in which the risk of undergoing chemotherapy is higher than the risk from cancer. She makes a statement that treatment is guilt insurance, assuming that it is human nature to do everything in our power to survive, even if that means undergoing an incredibly toxic procedure.||Jain uses statistics throughout her text to illustrate how damaging cancer is on our society, but also to show the efficacy, or lack there of, of chemotherapy as a solo treatment for cancer. She incorporates statistics of clinical trials that shows the bleak outcome for alternatives. Her text seemed to be calling for a new system, or new thoughts around cures for cancer and the way it is researched.||The passage that really sparked some emotion for me is on page 94, at the bottom of the first paragraph. She writes "Within this morass of big money and big suffering, the hegemonic tropes of hope, charity, the good death, and cure seriously misrepresent, obscure, and play down the deeply political nature of the disease." This 'deeply political' nature of the disease is a bitter pill to swallow considering how many individuals die from cancer each year. It is difficult for me to understand how it is that with all of the funds and research the cancer industry has accumulated over the years we still do not have a truly effective cure. Thousands of people in our country die from cancer each year, while drug companies continue to bring in big profits off of the incredibly expensive chemotherapy drugs used to 'cure' it. The way clinical trials are integrated into this process is also upsetting to me, as death is accepted as an inherent part of this process. Humans are being sacrificed for the 'greater good' or future generations, yet we still have yet to discover a cure (?). Of course chemotherapy can be effective in some instances, as my mom was diagnosed with ovarian cancer over 10 years ago, and through chemotherapy and radiation her cancer has gone into remission. But there are so many others who are not as fortunate, and they have to die a painful and often slow death. In this arena I think there are ethical questions that can be raised that critique the ways in which cancer research is conducted. I can't help but think of the ACT UP coalition that fought for AIDS treatments. Through their efforts, more effective medicine was developed, but only after a long hard battle, and many lives lost. Maybe if Americans stood together in solidarity and demanded a cure in the same way member of ACT UP did a space for change could be created.||Should we be focusing more on the causes of caner, and preventative medicine/action to facilitate a more effective understanding and treatment of the disease? |
Are our current clinical trial practices ethical? How can we make them better?
|5/22/2013 21:56:53||"The Mortality Effect: Counting the Dead in the Cancer Trial" was written in 2010 by S. Lochlann Jain for "Public Culture" which is an interdisciplinary journal released three times a year in the Fall, Winter, and Spring sessions in order to educate students and peers about the spread and effect of culture throughout society. From the times of publication and the publishing organization (Duke University Press), the journal seems to be directed toward students and academic peers. Jain promises to explain the mortality effect and how we see it throughout health culture. Her absolute goal is to see how cancer is lived and reproduced in the United States. Her conclusion fulfills the promise. The texts' friends and enemies may be oncologists, other cancer researchers, patients, and survivors that may disagree with her views. They might feel that he is too analytical about something that should be treated as a progressive and positive experience. Citations are included in the footnotes.||"The Mortality Effect" discusses the effects of going through drug trial experiments for cancer. People will inevitably die from cancer, and for those that do and have gone through trials, we can gather analytical observations about the trial has affected the way they think about the many facets of cancer diagnoses, treatment, care, and their own lives. People will live or die, but we will always be able to obtain further knowledge toward understanding about disease, mortality, and medicine. Jain looks at institutions and statistics across the nation. I gather that this data and study is from the early 2000s since this paper was published in 2010. There is no comparison.||Jain’s goal in her essay is to analyze her observations of how participation in medical trials and the unconscious experiences that the structure of the trial causes affects the way people with cancer understand it, orient themselves toward possible participation in future trials, the way people research disease or drug selection, and the way they interact with their doctor and advertisements for cancer drugs. I find her evidence (founded by her observations) to be quite logical. In one statement, she suggests that these trials lend patients an air of hope, futurity, and progress. This may give them a more positive outlook on their life. Jain argues that RCT is not as benign a method as it seems. She provide horrific tales of types of trials and experimental procedures done on patients and continues to establish that death is necessary for the advancement and progress for a cure for cancer. Hier paper revolves around whether unethicality trumps definite progress. She describes this as the legacy of the dead: a cure that will save millions of lives later on. I'd say her argument is pretty robust. He provides plenty of evidence for both sides while injecting her commentary. The key concepts that Jain utilizes is ethics, scientific progress, and sacrifice. These concepts are definitely challenged by the mortality effect. Ilness is seen as a way to health, but this health is compounded by death. Logic is assumed, and morality is as well. Both are universal, but their battle in this issue is dominant. In her conclusion, Jain states that "people come to science as bodies whose characteristics can be averaged out, aggregated, and canceled out, assumes that actual individuals do not matter to the population-based basic science." This notion is definitely particular and perhaps can identify only a small number of the medical community.||Jain states that she interviewed folks, but she did not explicitly say what questions she asks them. I supposed she asked oncologists and other researchers how they felt about knowing that a large number of their human test subjects were going to die. She also interviewed patients about how the trial has affected them. There is a real disparity between the two. The patients are hopeful and want to survive, but the doctors are definitely not as hopeful. Jain also uses statistics on rates of death and success in cancer treatments. Data was analyzed by pairing both types of evidence in her argument. Her analytical commentary tied them together. People were grouped on whether or not they were in the medical field or a patient. Core values of trust, risk, and ethics were brought into play. A patient may trust their doctor but their doctor may not tell them they will be put into a trial medical plan. All three can be coordinated to result in a healthier patient. I think if Jain had incorporated interviews of people who were not related to the medical field or cancer would really help her support her argument.||On page 107, Jain states that "cancer deaths support the research and the researcher; they are productive, and they support whole industries and economies, however success is measured. Indeed, the more people die, the more the science becomes self-referential: the bigger a problem cancer becomes, the more trials we need." This passage frustrated me because it sounds like we are only interested in the numbers. We are not interested in the lives that we take or the lives that we risk. We are only concerned about the advancement of ideas and following them through, no matter how excruciatingly painful they are for the patient. To me, this is immoral and wrong. On the other hand, I see the sense in this. In order to save the lives of many in the future, we must have trials. And we can only perform these trials on those who have been diagnosed with cancer. These people are pioneers, in their own way; they will leave their legacy behind for the sick after them. This article really makes me question my morals and my ways of thinking.||If your friend had cancer and had the option to undergo a preliminary trial for a cure that you knew would later benefit your mother, but would make your friend experience pain, would you ask him or her to do it?|
If the topic at hand did not include cancer, but instead a disease that has been treated before, do you think issues would arise around more experimental trials?
|5/22/2013 22:52:52||The article, “The Mortality Effect: Counting the Dead in the Cancer Trial” by S. Lochlann Jain, was written in the United States in 2010. The article was written for anthropologists and individuals interested in the medical field. This can be inferred from where the work is published in Public Culture. The introduction promises to explore the randomized control trial (RCT) and its effects on individuals suffering from cancer through the use of real drugs and a placebo. The conclusion fulfils the promises made in that it explains how a new view on cancer has been opened up with the use of hope, risk and comparisons of individuals in a contemporary stance on cancer. The citations are used as footnotes at the bottom of each page and allow for references from individuals such as personal stories, medical knowledge, and anthropological knowledge to be seen.||The article study is done in the U.S. The scale of the study is an institution in that it studies a RCT on a specific drug. The study is done from 2007-2010. The work was published in 2010. There is comparison and it centers around randomized control trials and the alternative to the trial method.||The main argument of the paper focus on the institutionalization of cancer treatment and research. The main argument explains how RCT studies human mortality through notions of hope, progress, and how subjects live with cancer. Evidence comes in the form of stories about patients and physicians who are part of the randomized control trials. The argument could be challenged on the assumption that people are unsatisfied with their fate, and or people constantly push for a research trial. The concept of studying morality on the scale of how people suffer due to the trails is an invented concept. Health and illness are used in reference to how individuals view their lot in life and how they hope for a successful drug trial over getting a placebo.||The article looks at what people do and say. The data was analyzed on the basis of how people participated in trials and how the trials measured success or failure. How patients were judged based on counting deaths, side effects, and successful treatments of cancer. The assumptions that were made were based on how humans want to survive and thus strive to get the best treatment possible. People are categorized based on what role they play: physicians, patients, placebo receivers, and drug testers. Polling data would help the argument. Polling asking who believed they received a placebo or the real drug, and asking questions of how the trial affected individual’s outlook of life.||I will be focusing on the passage on page 98 and 99. I found it intriguing that randomized control trials can be applied to other sciences other than medicine. The removal of the human factor, seems to remove the element of emotional ties, and thus alters the study on a huge scale. The idea the randomized trial can be applied to farming and other fields shows the versatility of the scientific method and how well tested the theory behind RCT is. I was also interested in the fact that RCT in the case of cancer trials focuses not only on the success of the drug but rather the outlook and morbid reality of the patient. The placebo effect is definitely different when applied to non human subjects over human subjects. The humanity factor adds variables that complicate the study far more then fertilizer. The fact that in reality humanity can be reduced to simple numbers to be compared to the success of an RCT trial with fertilizer is astonishing and does not make one feel comfortable.||What are other methods that could be used that do not involve randomized control trials?|
How does one measure the issues of hope, and or bleak outlooks in life in relation to the trials?
|5/22/2013 22:55:00||The article, “The Mortality Effect: Counting the Dead in the Cancer Trial” by S. Lochlann Jain, was written in the United States in 2010. The article was written for anthropologists and individuals interested in the medical field. This can be inferred from where the work is published in Public Culture. The introduction promises to explore the randomized control trial (RCT) and its effects on individuals suffering from cancer through the use of real drugs and a placebo. The conclusion fulfils the promises made in that it explains how a new view on cancer has been opened up with the use of hope, risk and comparisons of individuals in a contemporary stance on cancer. The citations are used as footnotes at the bottom of each page and allow for references from individuals such as personal stories, medical knowledge, and anthropological knowledge to be seen.||The article study is done in the U.S. The scale of the study is an institution in that it studies a RCT on a specific drug. The study is done from 2007-2010. The work was published in 2010. There is comparison and it centers around randomized control trials and the alternative to the trial method.||The main argument of the paper focus on the institutionalization of cancer treatment and research. The main argument explains how RCT studies human mortality through notions of hope, progress, and how subjects live with cancer. Evidence comes in the form of stories about patients and physicians who are part of the randomized control trials. The argument could be challenged on the assumption that people are unsatisfied with their fate, and or people constantly push for a research trial. The concept of studying morality on the scale of how people suffer due to the trails is an invented concept. Health and illness are used in reference to how individuals view their lot in life and how they hope for a successful drug trial over getting a placebo.||The article looks at what people do and say. The data was analyzed on the basis of how people participated in trials and how the trials measured success or failure. How patients were judged based on counting deaths, side effects, and successful treatments of cancer. The assumptions that were made were based on how humans want to survive and thus strive to get the best treatment possible. People are categorized based on what role they play: physicians, patients, placebo receivers, and drug testers. Polling data would help the argument. Polling asking who believed they received a placebo or the real drug, and asking questions of how the trial affected individual’s outlook of life.||I will be focusing on the passage on page 98 and 99. I found it intriguing that randomized control trials can be applied to other sciences other than medicine. The removal of the human factor, seems to remove the element of emotional ties, and thus alters the study on a huge scale. The idea the randomized trial can be applied to farming and other fields shows the versatility of the scientific method and how well tested the theory behind RCT is. I was also interested in the fact that RCT in the case of cancer trials focuses not only on the success of the drug but rather the outlook and morbid reality of the patient. The placebo effect is definitely different when applied to non human subjects over human subjects. The humanity factor adds variables that complicate the study far more then fertilizer. The fact that in reality humanity can be reduced to simple numbers to be compared to the success of an RCT trial with fertilizer is astonishing and does not make one feel comfortable.||What are other methods that could be used that do not involve randomized control trials?|
How does one measure the issues of hope, and or bleak outlooks in life in relation to the trials?
|5/22/2013 23:50:57||The Mortality Effect: Counting the Dead in the Cancer Trial was written by Dr. S. Lochlann Jain published in Public Culture 2010. Dr. S. Lochlann Jain is an Associate Professor in the Anthropology Department at Stanford University. She teaches medical and legal anthropology. |
The primary audience would include anthropologist and students of anthropology, special interest to medical anthropology specialists and students, and to medical practitioners and students (special interest in oncology and research).
The introduction and the conclusion present a way of looking at the relationship that are structured and viewed within the realm of randomized control trials. The author was successful in translating these views where each actor has a role and foreknowledge of a loser.
The friends of this article will definitely include anthropologists (students and professionals) for looking at how people deal with the issues of life/death, win/loss, and numbers/people’s lives. Some of the enemies may include researchers; however, I don’t believe that they would be considered “enemies”, but may want to argue their endorsement of the practice.
|It is not specifically addressed as to where the work is being studied, as much as how it is being studied. It is a meta-analysis of other articles/books and personal observations of the author. The scale is world-wide. Participants in research studies are selected throughout the world. The time of the study goes back to the agricultural applications of controlled trials, research after WWII, up to present day. The author specifically discloses that it is not an indictment or support of the RCT, but the manner in which people are translating the participation, their bodies, the loss of lives, and how it is configured through analogies of war, battle and heroism. Within these narratives and relationship is gain and/or loss – physically, financially, and mentally.||The author argues that there is a “mortality effect.” This is a cancer death that by itself creates different dynamics and “paradoxical” for the players involved in the “cancer culture.” The players each have distinct goals, hopes, and aspirations; however, for some of the players, their achievement comes at the death of the participant. Life/death/survival/battle and winning all come at different and separate costs. For one to win, another will die. Hope and heroism lie in sacrificing without knowing what the sacrifice may be. What is it to win? Life, living with the continual threat of reoccurrence, and death – when and by what?|
The argument is very robust. The fight for life is primal. Seeking treatment – fighting for inclusion to a new treatment – the search for hope to live another day – these are the carrots that are dangled, not as a guarantee of hope, but inferred as a potential remedy to the cancer cells.
This argument does not challenge the practices directly, but does look at the transformation of people, physicians, and pharmaceutical companies that view the same procedures through differing lens. For the people, they have lives, pasts and futures that they want to live to see. The physicians need to have “significant” loss of untreated lives to support the success of their research. The people lose their identity to become a number and statistic. To the pharmaceutical company and the investors, a successful trial becomes a good return on their investment. Each agenda is valid and a reality to each. The battle of the cancer has the collateral damage to the patient through side effects and emotional tolls.
|The research was conducted through meta-analysis and observations made by the author. Although the interviews were not all direct, they echoed the narratives and constructs that are formed in the “cancer culture.” The paper is all about how people think, act, and interpret actions and roles in participating in the RCTs.||“In exchange for the deaths, the researcher renders them significant; he counts them. In counting them, he conjures a future – on the one hand, absorbing the individual into a yearned-for advantage, and, on the other, further institutionalizing that fantasy of hope for the next generation of subjects.”|
This struck a personal cord for me. My second daughter was born with the umbilical cord wound her neck resulting in loss of oxygen to her brain. She was a spastic-quadriplegic with a seizure disorder. I read the PDR each and every time a new medication was introduced. If one thing wouldn’t kill her, another had the potential. It was always the balance of assessing the lessor of two evils. I also know that an enormous amount of animals were brutally attacked to create the seizure condition and were sacrificed to test medication that she eventually took. I also thank all the people who participated in trials and suffered the consequences of the trials. It is and will continue to be a sensitive area where medical gains are created by the deaths of others.
|1. People are transforming all the time. Potential end of life issues impact many people and in many different ways (i.e. young v old, non-suffering v suffering). By participating in a trial, is that not a legacy? We live longer, better, and our children benefit from the paths created before us due to participants. Isn’t that a form of heroism?|
2. Doesn’t hope and positive attitudes have a correlation with quicker recovery and less negative outcomes?
|5/23/2013 1:05:22||"The Mortality Effect" was published in 2010 in the journal Public Culture, which is published by Duke University Press. This article was written by S. Lochlann Jain for a college educated audience or above, based on the language used in the article. Furthermore, the article is written for an audience interested in cancer, cancer treatment, clinical trial, medical anthropology, and science and technology studies. The introduction promises to explain the "mortality effect" of cancer trials and the paradoxes of cancer culture between science and life. The conclusion addresses this promise by using the TroVax pamphlet example from the introduction. The text cites other anthropologists and cancer researchers as support for the argument.||The article studies randomized controlled trials, especially when used in cancer clinical trials. The study was done in the United States. The scales are the United States, cancer, cancer patients, doctors, cancer trial drugs, experimenters, cancer symposiums, and drug institutions. Time of the study was not specified in the article, but can be assumed to be before 2010. Comparisons are not made in the article.||The main goal of the article is to verify that clinical trials are structured around understanding cancer, producing statistics, and getting participants for the trials (91). The main argument is "how the organizing structure of the trial arranges and comprehends its mortal subjects by relying on affective economies such as hope, progress, and futurity" (93). The argument is fairly robust. The author uses a TroVax pamphlet to start off the argument. Jain states that success of trials is based on counting fatalities and objectifying the patient. Clinical trials and cancer treatments create treatment injuries, besides illness injuries, and their efficacy is not fully understood. In the end, clinical trials are used on cancer patients who will die anyways and thus choose to help future cancer patients/society. Randomized controlled trials are used with these clinical trials and are chosen as the ideal process for obtaining data. Cancer culture is about finding a solution for the future. Doctors are fairly skeptical about certain drug treatments, but if a patient is in the last stage then any FDA approved drug treatment that fits the patient and illness is usually used. The more aggressive the drug treatment, the more it is wanted by the patient. The key concepts used are illness, disease, death, mortality effect, life, medicine, hope, randomized controlled trial, and aggression. Each of the key concepts are defined. Death is a defined as a way to view cancer. A universal notion of human nature, that is assumed, is that they prefer to live and hope is key to survival. It is also universally assumed that cancer is a one disease that kills people easily and any treatment for cancer is necessary, no time can be spent on finding the source.||The methods used for this study were ethnographies, literary analysis, and historical research (91). The study looks at what people say, or what is said on literature. The data was analyzed based on how clinical trials are presented and perceived by doctors. Assumptions made during the analysis are that RCT is the only method used to get study subjects and that "[cancer] patients are understood as being in a battle for their lives" (114). Data on patient perspective and patient family/supporter perspectives of clinical trials would strengthen the text.||"The success or failure of the treatment will be attributed solely to the treatment itself...as when doctor after doctor told one person dying of pancreatic cancer that 'there is nothing more we can do for you,' as if the caretaking work were, in fact, nothing" (101).|
This passage frustrated me. This passage reminded me of Roberts' discussion of caretaking in Ecuador. When dealing with a terminal illness, and when dealing with health issues in America it seems that the doctors prescribe the drugs and the drugs treat the illness. If something goes wrong, another drug is used or the doctor is blamed. The care that doctors are presumed to give is not the care Ecuadorian IVF doctors, or Farmer, gives, which is the social ideal. Of course not all doctors are like this. Many articles about American health also overlook the care, help, and support family and friends give the cancer patient. This quote also resembles the objective biomedicine that the American health care system has acquired. Treatment is only about eliminating the illness and disease disappears with science, not about caring for the patient and making sure outside-the-doctor's-office situations do not start or create worse symptoms/illnesses. And with cancer, doctors give the most drugs they can and the "most" care they take, but with the expected bad results nothing can ever be done.
|1. How do different clinical trials categorize patients? Before making a statistical goal? With shareholders in mind, over producing morally good results?|
2. How are RCT controls controlled for? Are patients under hospital care?
|5/23/2013 1:32:17||This text was written in 2009 and published in the journal Public Culture. The author is S. Lochlann Jainn, an associate professor at Stanford University. Dr. Jainn is both a medical and legal anthropologist. The audience of this text could be anyone interested in cancer cures, double blind research testing techniques, or medical anthropology. In the intro, the author promises to examine the binary dualism of life and death, and analyze the practice of randomized control trials (RCTs). The body and conclusion of this text fulfill the introduction. The friends of this text are the nameless subjects who volunteer for late term trials, and utilize their probably deaths as data to assist future patients. Citations are used by including the author's name within the sentencing of the text, and then the author's work is officially cited at the bottom of each page.||This text is about randomized control trials among patients with late-term cancer. The patients volunteer to be subjects in double blind studies, and are thus even given a newly made potential cure for cancer, or ordinary treatment. It is hard to discern the scale and time of the study, however I would guess that it took place over many years and across many different sites. In the text, the author compares how doctors and patients feel during the course of an randomized control trial period.||The main argument of this study is that randomized control trials are a very morally complex, and yet necessary way of testing new drugs which may help to cure cancer. The author states that randomized control trials rely mostly on hope, progress, and futurity, meaning that those who are actually participating in the trial will most likely not benefit from it. The author also argues that this type of testing objectifies patients, and turns them into numbers on a chart rather than human beings. This is reflected in the doctor's statement that they required over a thousand relapses in order to get adequate data. Evidence is provided in terms of analyzing other people's work and the author's own experience with the subject matter. The argument is rather robust, and pulls data from many different sources. Perhaps the argument could be challenged on the grounds that it does not interview any doctors or patients and does not get their real opinions on the matter. Health is implied to be the absence of or recovery from cancer, whereas illness is implied to be the having of cancer. Human nature in the case of the patients undergoing trials seems to be universal in that they are all objectified and turned into numbers, no longer cared about as human beings.||This text utilized an analysis of other works as well as the drawing upon of the author's past field work. It looks at how people, particularly doctors and patients, think and do when it comes to randomized control trials. The data was analyzed by picking out key motifs and themes that seem to underlie every randomized control trial test. People are categorized into the bins of doctors, patients, and future patients. The core values of science, research, humanity, and objectiveness are dug into in this text. I think that more interviews, with both doctors and patients, would have done a great job at strengthening this text.||One passage which particularly inspired me was on page 102 in which the author states that randomized control trial testing depends on future investments, and most importantly the alliance of current patient and future patient. I think that this is a very important realization, in that current patients who agree to undergo these clinical trials are really putting the betterment of society upon their shoulders. They are acting as lab mice in these great experiments that may one day lead to a cure for cancer. In doing so, they are assuming a lot of risk. They could be taking new medications that are actually harmful to them, or else undergoing regular treatment and taking a placebo that provides them with a false sense of hope. It is hard, however, to compensate these subjects because they all too often die in the process. It is even very nearly a requirement that many of the patients die so that adequate data can be collected. Though these patients are put in a tough position, I deeply respect and admire their choice to participate in such an important experiment, and help to hopefully find the cure for cancer.||Should patients and/or families be monetarily compensated for participation in an RCT?|
Why are cancer RCTs not exported to other countries as other clinical trials so often are?
|5/23/2013 7:47:19||The Mortality Effect is a text written by S. Lochlann Jain and was published in 2010 by Duke University Press. There are footnotes at the end of almost every page that either explain the indicated segment in more context or refers the reader to another related source. The introduction is structured to discuss the ethics of using humans in testing new drugs as a roundabout way to develop a way to treat cancer.||There were discussions with professors and scholars on differing viewpoints of the trials of medication and placebos. The studies varied among groups of cancer patients in which there was a control and test group. Groups of cancer patients would be selected to be in either, followed by the reception of either the standard or the new drug being tested.||The key points being discussed involve the morality and ethics of the experiments being performed. The structure and process of how the trails are being conducted rely not on solid data but by chance and hope. There is the question about who is in charge of making these decisions, and how they do not even observe or participate in the experiences. Survivors of the placebos would be given actual drugs to take to treat their cancer. But as the survival rate stands at 5%, allowing the patients to undergo placebos for the sake of experimentation rather than treatment becomes the major issue.||In some of the acknowledgments, Jain thanks a number of scholarly individuals from the institutions across the United States for their input and insight on the topic of study. She incorporates quotes from interviewed patients and statistics from research. She refers to many works by other people in her paper and explains their argument and their findings in accordance to the issue that she is discussing.||The questions posed on page 115 raise the main critical points that the article is trying to discuss. There is a fine line between using treatment as a method of clinical experimentation and for its actual intended use. The length of the treatment use is up to the discretion of the physician, and they should operate based on how to treat the patient first and foremost. Treatments that become increasingly more expensive as trial phases progress are seen as too extravagant and the cost-effectiveness of it is uncertain, especially if the treatment does not prove to be effective. Profit and money underlie many of the choices being made in the medical industry. Medicine is a for-profit business, and the healthcare providers aren't just there to volunteer to look after you.||Who really should be held accountable for the deaths, losses, and trials gone wrong? Individual physicians? Experimentors? Corporations?|
Is it as ethical to perform treatments on sick people if the degree of the condition was not so severe – if life and death was not on the balance?
|5/23/2013 8:56:36||This article was published in 2010 in the journal Public Culture. It was written by S. Lochlann Jain, an anthropology professor at Stanford University. Jain specializes in medical and legal anthropology. I would infer that the audience is mainly scholars of anthropology. The syntax is very complex and therefore does not seem written for the general public. The introduction states that Jain’s intent for the article is to examine the structure of clinical trials for cancer and how their basis relies on hope, progress and futurity. The article fulfills this thesis statement.||Empirically, the study is about clinical trials. However, through clinical trials it looks at cancer and how we view cancer in our society. The location of the study is unclear other than the fact that it takes place in the United States. Therefore, it is on a national scale. The time of the study is unclear as well, but we know that it was published in 2010 so it is fairly recent. I believe that the comparison that exists in the article is between cancer as a disease and cancer as a mechanism of study. We can view cancer on the individual scale, as someone suffering from a terminal illness, or we can view it on the level of advancements in medicine and see those individuals as a mass, or a group that make cancer research possible. The comparison touches on the different views of what our body is.||The main goal of the writing is to verify something rather than argue a theoretical claim. This main argument is that RCT is, “a forward-driven representational form” (115). Jain brings up that this point challenges the divisions between science and politics. Therefore, her argument could be challenged by further examining these divisions. Some of the key concepts are war, the underlying concept of RCTs, progress, and morality. In this article, health, illness, and disease are viewed on a much larger level than in articles we have read in the past. They are seen as more collective. One could argue that RCTs benefit the collective health of our society but not the individuals.||The article is mainly a collection of data. It is not an ethnography and interviews do not seem to have been performed. The article looks at what people do, rather than how they think or what they say. It looks at how they organize clinical trials and how they participate in them, which are all actions. The data was analyzed through a compilation of studies and information of clinical trials of cancer.||On page 93 Jain is discussing the goals of her paper and the overall concepts she hopes to explore. She says, “The actual people who make these decisions are missing from these accounts or papered over with epithets of their bravery and courage” (93). The decisions she refers to are in relation to the use of chemicals in natural cancers. What struck me as the most interesting here was just the way she said “actual people.” The whole article is so centered on people with cancer as a whole that it is hard to see that there are “actual people” within this group. The paper would be completely different, it is a totally different topic to explore, if it focused on the individual person. So my questions are who are these actual people? and how do they come to be so different from the people in the accounts?||So my questions are who are these actual people? and how do they come to be so different from the people in the accounts?|
|5/23/2013 8:57:01||The Mortality Effect: Counting the Dead in the Cancer Trial, was written by S. Lochlann Jain, and published in Public Culture in 2010. Public Culture is a social science and humanities research journal, published three times a year by the Duke University press. Based on the source of publication, this article was likely to be targeted towards those in academia, primarily other researchers in anthropology. S. Lochlann Jain is an associate professor of anthropology at Stanford University, where she teaches medical and legal anthropology. Her research focuses on injuries through mass production and clinical trials. Jain received her BA from McGill University, and her Ph.D. in the History of Consciousness at the University of California, Santa Cruz; she also did post-doctoral work at the University of British Columbia. She received the Cultural Horizons Prize from the Society for Cultural Anthropology. Within the introduction, Jain promises to explore the complexities and structure of clinical trials and how they can blur the lines of morality for those who will not be helped or even worsened by their participation in the study. She focuses on the way that standard randomized control trials (RCT) can have the potential to be unethical as it assumes that a portion of the group will not be getting the treatment and suffer consequences as a result. She particularly is interested in treatment injury and how the person may suffer after they have decided to participate as a research subject. In the conclusion, Jain stats that these practices of using trials are unethical because they take dying humans as experimental subjects that can be treated as guinea pigs for various experimental treatments that may or may not work. There are people who profit from these attempts to find a cure, which makes these methods even more questionable. Jain uses footnotes throughout her paper in order to explain certain methods, researchers and cite other researchers in order to further her argument.||This story empirically is about the use of RCT for looking at ways of treating cancer, and how it can be seen as unethical because it sacrifices those who may potentially die as a result of participating in the trial or even by taking the placebo. Due to cancer’s aggressive nature, and the fact that it is a disease well studied but not well understood for treatment, there are many clinical trials that are held to test particular possible treatments for cancer. As there are two groups that are randomized and then given either a placebo or the treatment, and neither group knows what treatment they are getting, this process can possibly risk those who might benefit from taking the treatment. It even examines some of the treatment injuries of these studies. Many times even the patient requests for an aggressive treatment because thy themselves are aware of the fatal nature of their disease. They are willing to risk their lives for the small hope that is provided by these clinical trials. Knowing their vulnerabilities, they are made to feel that there is hope and a future for them if they participate. They may even be part of progress in the rare case that the trial will lead to a cure. The scale of this writing encompasses all those involved in the search for a cure for cancer, and specifically in the United States, where we have invested billions of dollars for the hope of a cure or effective treatment. The study looks also at a historical lens of the past incidences of cancer and the various successes and failures of clinical trails. It examines the first use of chemotherapy after World War II, and then chronicles the various milestones in progress since that time. Jain looks to many researchers in cancer trials through the end of World War II to the present and primarily collected her research from research institutions such as the University of California, San Francisco, the University of Michigan and Harvard University.||The main goal and argument of this piece is to examine the morality of these trails for cancer, and if the risk that these patients take for the promise of a cure is unethical. In particular for studies surrounding cancer, as it is such a widespread and well-researched disease, many are intent on finding effective treatments. As Jain states in her research findings, the success of this RCT method is dependent on the fact that all cancers are treated as the same disease, or that their condition is similar enough to be grouped together. Oncologists have acknowledged that for breast cancer alone, there are about two hundred diseases that comprise that diagnosis, and are broken down further by looking at the stage of the disease, the age of the patient and the receptivity of the tumor. Even in the case of chemotherapy, the process of chemotherapy alone can be the causality for the death of a patient, for many injuries to a cancer patient. There are a few people that will benefit and save, and that population is the one that is most looked at by physicians in order to continue its use. Chemotherapy attacks and kills quickly dividing cells in the body to kill cancer cells, and as a result also kills healthy cells. Unlike other treatments such as surgery, it is not localized and the entire body is susceptible to the side effects. Typical known side effects include bleeding, nausea and hair loss, but long term effects can include leukemia, heart failure, fatigue and cognitive impairments. One of the key concepts seen in this particular article is the idea of hope, not science. These trials instill hope into patients. The numerous failed attempts at finding a cure or other effective treatments does not slow down the many proposed trials that are to come in the future because in the case of a disease of cancer that is common and fatal. We do not want to believe that with the billions of dollars that we have invested into cancer research, we still have not found any distinct answers about how we can reach a cure. Vulnerability as a person who is not in good health is used as a pawn for the continued use of RCT for cancer.||The data for this paper was compiled through interviews and research. As noted as a footnote on the first page, Jain acknowledges the University of California, San Francisco, the University of Michigan and Harvard University. She attributes names of individuals who she interviewed in academia or researchers who have communicated to her about the various approaches to cancer. The interview questions look into specific cases of cancer trials, the history of cancer and various treatments, as well as ethics behind testing cancer patients. It looks at the way that people agree to do trials and how patients think of the possible outcomes. Jain wrote out her arguments in order to analyze her data, and then supported them with the various interviews and sources, and also gave historically relevant information on the treatment of cancer. All patients of cancer were often grouped together in the various clinical trials, and the paper focuses on the use of RCT for all cancer patients. In terms of values, Jain looks at the risks that people are willing to take in the dire hope of a cure. Even if the odds are against them, it is easier to hold onto something than to assume that your fate is already decided. The data would have been strengthened if interviews were conducted with patients who either had participated in studies or any patient of cancer.|| “Hope for the individual and progress for science usually justify the intensely dangerous or painful cancer treatments. In the RCT framework, ideally, many treated subjects get better and untreated subjects get worse. Thus a trial will require the ill health and the death of many of its subjects to provide for the investigator evidence of efficacious treatments” (96). |
I found this to be a very profound and disturbing quote, as it is hopeful to think as a patient that you are giving your body to science in the hope that your situation can lead to a cure or progress, but sometimes that means you are subject to death. The treatment can kill you before the cancer can. In any ideal trial situation, there is hope that all of the treated patients will get better and then as a result those who are untreated will be able to get their treatment once the trial is over. By that point, it may be too late. If the disease already has weakened their body, it is already susceptible to becoming even more ill. In another portion of the text, Jain mentions that patients often are the ones that request the most aggressive treatment of their disease. In this case, are the patients not being completely briefed on the scale and complications of their disease or do they request it because their small hope for the treatment to work outweigh the complications that may result from it? Unless you are patient of cancer, it may be hard to understand or approach this question, but I found that throughout this paper it appeared that for any form of cancer, there was always the hope that their trial would be the one that would cure cancer.
|1. When will the deaths outweigh the possibility for a successful treatment to be found from the trials? Why do we continue to sacrifice those deaths for hope? |
2. Why do we continue to group all patients in the same group of “cancer” when not all treatments affect the types in the same way? Why has chemotherapy been still widely used for all types?
|5/23/2013 9:05:22||S. Lochlann Jain wrote the article, “The Mortality Effect: Counting the Dead in the Cancer Trial”. The article was written in 2010 and took place in United States. The author is a professor of Anthropology at Stanford University. In the introduction the author promises to looks at randomized control trials (RCT). Throughout the article the author was able to successfully examine the effect of RCT. The author’s friends are individual who have experience with this phenomenon and the author quotes some of their research in this study. Jain does not mention any enemies of the text.||The author wants to look at how “the infinite time line and life-or-death binary of the mortality effect as structured by the firm logic of the RTC” (Jain 90). The observation is located in the United States by Oxford Biomedica. The scale was institution based because it consisted of individuals who qualified for the treatment. The time of the study is unclear. There is a comparison between the new treatments versus the standard treatment.||The main argument is to explore the structures of trials. The author wants to verify her claim. She explicitly states how she wants to see if the “trial methodology itself works” (Jain 92). The argument could be challenge because some might believe that trails work, while other would believe they do not work. The main concept in this article is RTC. The author explains how they have conducted RTC and asked patients questions. In this paper the author touches on the idea of cancer as an illness where individuals will be put in separate trial session of treatments. The author adopts the assumption that RTC is a method to conduct trial sessions.||The author uses the method of an observation and ethnography. The author writes down what she saw and observed how the RTC is conducted. Interviews were conducted and questions asked were: why did you sign up for the treatment when there are risks?, What will happen if you get the placebo?. The author mainly looked at what people did and said. Jain analyzed the data by putting together what was found and include her own thoughts. The assumption that individuals wanted to be apart of the study was assumed. Individuals were grouped into two different groups, which ere the new and the standard treatment. However, individuals did not know what group they were in. Over all, it was an interesting observation and I would only suggest the author add more personal interviews in order for readers to connect with the patients more.||One passage that frustrated and interested me was when the author wrote, “In the RCT frame- work, ideally, many treated subjects get better and untreated subjects get worse. Thus a trial will require the ill health and the death of many of its subjects to pro-vide for the investigator evidence of efficacious treatments” (Jain 96). I thought this was interesting because it states exactly how treatments are conducted. In reality we want them to always work, but they are just trial session to make improvements in the medical field. The reason that I was frustrated was that many people do die because they do not receive the true treatment and are randomly stuck with the placebo. However, I’ve realized that in this type of research deaths occur, but they also help further the research process to create better medicine. I agree with the author when she stated that trial sessions need bad health or even death because it furthers the research process.||After reading the article, I question, what are you opinions about trial sessions, and do you think participants are being taken advantage of?|
|5/23/2013 9:13:46||“The Mortality Effect: Counting the Dead in the Cancer Trial” by S. Lochlann Jain was published in Public Culture in 2010 by Duke University Press. Jain is an Associate Professor in the Anthropology Department at Stanford University, where she teaches medical and legal anthropology. Her previous research has focused on the ways in which injury stories get told and this is apparent from this article. Public Culture is a peer reviewed journal of cultural studies and focuses on the public defining concepts of the late 20th and early 21st century. As such, the audience would be individuals who are interested in learning about the cultural dialogue of the late 20th and early 21st century. From the topic matter itself, the audience could also be physicians who conduct clinical trials and the patients who participate in it. Jain promises to analyze RCT as form through which people conceptualize “disease, medicine, and mortality” (Jain, 92). She also promises to analyze how RCT became the main way through which cancer patients are objected and through which cancer is “lived and reproduced” (Jain, 90). By the end of the reading, these promises are fulfilled and more than that, readers’ are left with circuitous and unanswerable questions. Citations are used to introduce other writing materials that could further clarify Jain’s argument. Friends of the text are Lerner on “radical surgeries,” Welsome and Kutcher on “radiation experimentation,” Toon on “big professional shifts”, and Olson on “’ sisterhood of guinea pigs’” (Jain, 97). These are references that have served to strengthen the argument that cancer treatment has always been extreme and toxic. They develop the narrative that has now made RTC a norm or ‘fact’ in cancer treatment. Olson’s “’sisterhood of guinea pigs’” (Jain, 97) is an especially powerful image of the objectification of cancer patients in the name of treatment.||This article is not specifically addressing one local area but rather the RCT that is practiced and accepted within the U.S. as a scientific ‘fact.’ It questions the reason behind this ‘fact’ of randomized trial and how its conception to begin with does not even make sense. It compares RCT to war and sports, since both forms have two sides where one side wins and the other side loses. It compares RCT patients and subjects to statistical data points, where these individuals are completely objectified to the point where they are not even recognizable. This text also compares who has the right to live and thus be placed in the experimental group and who has the right to die and thus be placed in the placebo group. Experimental group could also lead to death so no one group is safe. The “binary of the mortality effect” (Jain, 90) that is evident in RCT enacts a God-like role to drug industries, RCT conductors, physicians, or whoever else decides to assign individuals to experimental and control groups.||Clinical Trials use RCT as accepted ‘facts’ in order to validate treatment plans that are funded by drug industries. These HIPPA approved trials allow some individuals to get treated with a novel drug and allow others to receive placebo treatment. The blinded setup of the RCT does not allow anyone to really know which group is receiving what, but this is not the focus of this article. Instead, Jain argues and highlights the cultural setup that has allowed RCT to be a ‘normal’ procedure through which drugs get approved. The objectification of patients as they are going through severe diseases such as cancer is completely ignored for the greater good of science. The use of RCT and thus the “hope, progress, and futurity” (Jain, 93) that is packaged and sold to patients is a powerful arsenal that clinical trials have in persuading patients – completely throwing out or dismantling the consent part of participating in clinical trials. These subjects are ‘rewarded’ for their participation by being made to believe that they are making a contribution for future patients; these patients are brain washed by the idea of participating in edgy scientific procedures that might be the next best treatment plan. The whole RCT is based on the concept that some people have to die or experience an adverse effect in order to validate the data. As a clinical research assistant and a regulatory assistant for clinical cancer trials office, I can vouch for the way subjects are objectified. I generated and processed adverse effect forms and in compiling those lists, I noticed the number of side effects that could result from novel drug treatments. It never occurred to me to ask what the threshold was, since none of the studies were ever interrupted during my time there. In this article, Jain makes the same argument: what is the threshold of patients that have to be affected in order to clinical trials to be stopped, who approved RCT and why is it still the normalized mechanism, who decides these standards. All of these are core questions and through the exploration of RCT, diseases emerge as pesky insects that need to be swatted away. The suffering and uncertainty that the patient feels is not considered. Even more interesting is the fact that now these patients are geared to expect high technology, toxicity, and edgy scientific methods. When you give patients the option of death or a clinical trial that might save them, how else would they choose anything but to participate in clinical trials. End stage cancer patients do not have a choice in this matter, so how can one even talk about ‘consent’? When we stop and think, we should be asking and investigating the cultural setup that has created and maintained the use of RCT and how RCT has come to define how cancer is lived.||Jain talks about the objectification of patients and how they become statistics. From this it could be inferred that statics was part of her data generation or method. It does not appear that there were interviews that were conducted with either patients or physicians specifically. This also applies for ethnographical method, there does not appear to be any in this article. From the citations that are used it looks at what experts in the field, or in other fields, have said to unravel RTC, clinical trials, and cancer treatments. It doesn’t appear that patients’ voice were present in this article either. It is not clear how the data was analyzed but it seems that experts in other fields were used to deconstruct RTC usage and apply other social theories to RTC. People are grouped in various ways: as patients that received treatment or placebo, as patients or objects, as physicians or robots that push for RTC, etc… The core value that is assumed is the insignificance of the pain that patients actually experience from their disease, what they are feeling is completely ignored in search of the next ‘fact.’ I believe that patients’ voice, active one, would strengthen this text by making their pain more relevant.||Passage of interest: “…of collective ling on, but who and what do we miss by moving to that endpoint so quickly? Bodies lent to science suffer, and in many cases greatly from cancer treatments, both standard and experimental treatments. Through its future-counterfactual promise, the RCT also dispenses with the questions of its own forms of violence; after all its, logics are corralled into the service of science, capital, and professional advancements, goals that do not in themselves correspond with cures or better, treatments (Jain, 103). In all of this, where is the patient and their pain? Where is the uncertainty and the new normality of their life? It is not until this that it truly clicked for me. I have worked as a clinical research assistant for two years and I never once thought about things like this. You start treating patients as objects and truly as data points. And while you are doing this and collecting better data for better publication, you tell yourself that this is for the betterment of science, advancement of disease diagnosis and treatment. The patients who suffer and are subjected to this type of patient care are completely discarded. And this all of a sudden becomes the new normal, the new ‘fact’ in science that gets propagated to future physicians and pre-medical students. It is classes like medical anthropology and the discourse that follows that can truly start to dismantle some of the ‘facts’ in medicine. In doing so, it’ll make physicians questions why they have done certain procedures the same way||Questions: |
1.) “Toxic treatments have simply been the presumed legitimate response to the “toxic cost of cancer”” (Jain, 96). How did this develop? Why is it accepted? What is it about cancer that makes toxic treatment an acceptable and almost expected form of drug?
2.) Why has the RCT method itself not be re-tested or reanalyzed in recent years?
|5/23/2013 9:46:15||The book was written in the mid 2000s and published in 2010. The author is Jain. It is written for the anthropological department intended for students. I can tell by the description given at the bottom. Yes the conclusion fulfills its promise, and the introduction says the author will go through RCT trials.||This book is written by Jain. It takes place in the States. The scale is mostly person- to person because this problem affects people individually. I also interpreted it to a national scale because if so many people are affected it is a big problem. As a result it can be interpreted as a national level problem. The time of study is in the mid 2000's. The book was published in 2010. There is a comparison between the different people, and their treatment compared to others.||The main argument of the readings is to show insight by the author Jain and to show “The trial was organized as a standard randomized control trial (RCT), in which one group of patients would receive the new treatment and the other group would be given the standard treatments. “The argument is explicit. Interviews, and insights into people lives are provided as evidence. It can't be challenged because of the information provided. Health, illness, and disease are used to give insight into people lives and what they are dealing with. They aren't defined but inferred from context.||Interviews were used. Mostly the patients would go into their own stories and explain. Yes it looks at what people say and do. Data was analyzed by the stories provided. The assumptions that shaped the inquiry was that these people all have dealt with problems. People were categorized by their problems. Core values that were assumed were that health is a main problem in this country, and its treatment options. Data that would strengthen the text would be additional interviews to give more of a insight in the issue.||A passage that inspired me was a passage on the gold standard. I was interested in this passage because the author brought it up in the introduction then finally went back to it towards the middle of the paper. The author gives the definition as “The RCT, as the gold standard of evidentiary medicine, refers to an experimental method in which two similar groups given different treatments are compared to measure the efficacy of the treatment.” This is interesting because it explores how medicine makes people do something and experience something as well. These trials act as placebos and gives the audiences a better understanding of what the patients are going through.||1. In what ways is the randomized control trial effective, and ineffective?|
2. What is the mortality affect?
|5/23/2013 10:00:03||The text, “The Mortality Effect: Counting the Dead in the Cancer Trial” by S. Lochlann Jain was written in 2010 in Public Culture Journal and published by Duke University Press. Jain is currently an Associate professor in the Anthropology Department at Stanford University, where she mainly teaches medical and legal anthropology. The text is written for most likely scholars in the field of anthropology or medicine, as well as college students such as myself reading this for class. I can infer the audience because of the language used as well as the type of information spoken about that separates it from just a normal newspaper article. In the introduction, Jain writes that she will explain certain things such as the “mortality effect” and how cancer deaths, removed from particulars of individuals, produce paradoxical subject positions for the vast range of players involved in cancer culture. Also, she investigates the methods and processes and individuals involved in randomized control trials (RCT) that test cancer patients with either a placebo or a treatment drug in testing and the effects this has on the patients. The text cites many people that are there to help back up the author’s claims and further her claims as well.||Empirically, the text is about the randomized control trials with cancer patients and how people have to die in order for data to be made, causing patients to be material and conceptual objects, the structure of these trials relying of affective economies such as hope, progress, and futurity, and treatment injury. The text is located within the United States. The scale is a national scale, because these trials are used everywhere by cancer drug companies, as well as in the minds of doctors, scholars, and patients. Since the article was published in 2010, the time of the study must have been within the past couple of years before 2010. The comparison spoken about in this text is dealing with the trials and comparing the two groups, the control and experimental group. The trial gives on group a placebo drug and the other the test cancer drug or treatment, so doctors compare the two groups after the trial is done in terms of effectiveness, usually by looking at the mortality rate to produce data.||The main argument and goal of the writing is to bring to the attention of the readers how the randomized control trials are in a way unethical and overlook many parts of humanity because of its narrow minded focus on presenting data and testing their drug despite treatment injury, lives in danger, hope, and objectifying patients, as well as sacrificing yourself for the greater good of the future. One of Jain’s main arguments is that highlighting the bumpy way in which RCT’s work, often taking decades, mistaking diagnostic categories and groups, and rendering highly debated results, does not demonstrate the clear path toward progress that the patient in a clinic reading a pamphlet about the trial may be led to expect (pg 114). Evidence provided for the argument is multiple stories about other drugs for cancer treatment, and alternate RCT stories. A main key concept used is the mortality effect, in which cancer deaths are removed from particulars of individuals and that the RCT’s need death in order to predict lives. Jain also talks about the life-or-death binary of the mortality effect that is structured by the firm logic of the randomized control trial. Illness is spoken about in terms of one having cancer and experiencing side effects or needing treatment from cancer drugs or chemotherapy. Sometimes these treatments cause injury to the patient while in the process of killing the cancer within their bodies.||The author generates data from literary, ethnographic, and historical research regarding RCT’s and cancer treatment. The author does not use interviews for this paper, but an interesting questions regarding chemotherapy that she asked is, “Is the suffering due to the initial (natural?? Cancer or the treatment, are people dying of cancer of chemotherapy?” (106). It is interesting that she asks this because it is tied into RCT’s and the fact that people don’t test for cancer before it is too late. There are very few prevention programs and much more RCT’s targeted at producing data through deaths. Some data looked at involved specificities such as a treatment drug for cancer causing a beneficial effect in only 4 percent of people as well as a specific RCT in which 1,050 people were needed to die in order to produce numbers that she refers back to throughout the paper. Some core values assumed relating to the medical profession at large and huge pharma companies can be seen as no matter what the means are, they justify the ends. And in this case if the means are to exploit people for their lives, disregard harm done to them, and to objectify them for the sake of these trials, it justifies the eventual means of having deaths to produce data and help out the future cancer patients. When in reality the cancer treatments take a very long time and most likely nothing happens after they are completed. The drug usually doe not work and it is discarded and people are sent home to die.||An interesting passage I found is on page 100, the last paragraph. It writes about the history of doctors before RCT’s existed and how disease was seen in an individual’s physical and emotional characteristics instead of the disease’s characteristics. Back then, doctors would not rely on data from RCT’s because they didn’t exist but also did not believe in that type of data. Doctors would submit their cancer patients to brutal treatments, removing muscle and bones, when it did nothing to lower the risk of cancer. This related to a belief in clinical care rather than statistical care, because there was none back then. But now there is a huge shift. Clinicians know what should and should not be done thank to RCT’s and statistics, and emphasis is drawn away from a disease’s physical and emotional effect on a person.|
The author has pointed out the problems associated with RCT’s, so how much focus should a doctor put on these statistics? Chemotherapy works and the doctor would lose their license if they didn’t offer a cancer patient chemo, but should clinicians sometimes rely on clinical experience and resist treating their patients based on trial results? I feel trial results have dominated statistics in the medical field and it’s hard to see another way to treat someone based simply on clinical experience these days.
|How can mobile, complicated, different individuals so easily be grouped in two groups and administered a treatment drug or a placebo? There are so many other factors involved that RCT’s do not account for. “Such coincidence enables the theoretical logic to stand up against actual practice.” (pg 100).|
Is it useless to medically seek ways to prevent cancer from even happening, or do so many objects in our daily lives today cause cancer, or so many genes have been passed down containing cancer that pharmaceutical companies are doing the right thing by only looking at treatment and not prevention?
|5/23/2013 10:06:06||“The Mortality Effect: Counting the Dead in the Cancer Trial” by S. Lochlann Jain was published in 2009 in a journal printed by Duke University Press called Public Culture. The author, Jain, is an anthropology professor at the University of California, Santa Cruz who studies injuries and health concerns, and how they are talked about and lived. The journal Public Culture typically contains ethnographies and articles about cultural politics of globalization (quote from journal description). With that in mind, it can be assumed that the article was geared towards anthropologists, sociologists and other social scientists who have an interest in medical and health issues on a societal level. Additionally, the article was published quite recently, therefore the information is pertinent and very much relevant. In the introduction, Jain promised to address randomized control trials (RCT) and how it relies on deaths, as well as the lived experiences of cancer itself. Throughout the text, Jain stays close to what she aimed to address and the conclusion fulfills what the introduction promised. The text criticizes RCT and skeptical of certainty that is so present and demanded in science, but it does so in a way that is graceful and justified.||Jain’s article is about RCT and the issues that arise with using it. More specifically, it shapes the way our society values life and life when one is on the verge of death. This ethnographic study is not located in a specific geographic location, but rather focuses on a group of people; cancer and pharmaceutical researchers and people who have cancer. Given that the article was published in 2009, the time frame for the work is in the early 2000’s. The entire text is a compilation of different cancer studies that use RCT and Jain discusses the success and failure rates of various cancer treatments and how they are talked about in science. In this way, there is definitely a comparison between how we view cancer patients who are newly diagnosed, in recovery or on the verge on death; the value of their lives, especially to pharmaceutical researchers and medical professionals, vary, but they are all valuable to the experiment.||Jain’s goal in writing this article is to discuss the implications of RCT through the lens of cancer because she feels that it has not been adequately evaluated in this manner. She argues that we put so much focus on how great RCT is, even though it relies on deaths and failures as part of its systematic method. This argument is performed throughout her analysis and Jain uses scientific studies and literature to help justify her points. I think what Jain is trying to argue for and portray is quite robust, as she uses compelling literature and brings up a point that is quite unique. The key concepts used are life, death, medicine and sacrifice. These concepts are all very intertwined with RCT and cancer because each individually add value to the scientific/pharmaceutical studies in their own way. Jain argues that life has a value, but in the context of medical testing, so does death. Cancer patients who are on the verge of death are encouraged to sacrifice themselves in the name of medicine, in hopes that the medicine/treatment that they are testing will be improved upon for future generations. Although Jain makes a great point in this article, I feel that if medical professionals or pharmaceutical companies could look at it and say that she is perhaps focusing on the negative too much; that she should look on the bright side to see how beneficial RCT is to the scientific world and how progress is made with sacrifices. Here, Jain uses health and disease in the context of ethics as well; is it ethical that some are untreated, while others are treated? What about the ethics of RCT? This ethical aspect of health and disease is something that seems to be overlooked because RCT is thought to yield progress and advancement in medicine, but nevertheless, Jain brings it up to show that progress do not come at zero cost. In this way, Jain is suggesting that RCT assumes that human nature is willing to sacrifice and is selfless, but also secretly slightly manipulative. While the sick people are willing to be subjects of an experiment, doctors seem to take advantage of their vulnerable sick state and encourage them to be part of medical advancement.||This was an ethnographic study that used literary articles about RCT and cancer as sources. Jain used these articles to look at the way cancer is talked about and lived, as well as exploring the implications of RCT on how we talk about cancer. The data was analyzed from the standpoint of an anthropologist, bringing up key points about RCT that are often overlooked. To do so, Jain grouped people into sick, or not sick; medical professionals, or patients. Sick people were implied to be more vulnerable, more selfless and more willing to give themselves up in the name of medical progress. People who are not sick are not of value to medical or pharmaceutical professionals. I think what would strengthen the text would be to incorporate some type of cost-benefit analysis in regards to the summation of lives saved via RCT for cancer research, versus the number of lives lost in the process of finding treatments using RCT.||What struck me the most in this article is this sentence: “Regardless of whether she lived or died, useful data would have been produced.” (pg. 104) This text brought up a side of RCT that I had never thought about; it is all about progress, advancement and usefulness. It discounts death and sickness and takes advantage of those who are on their deathbed. This phrase suggests that medical firms are only profit-oriented and subject-hungry, therefore whether you live or you die, their eye in on the medicine, not on the loss of a subject. I found myself incredibly frustrated that RCT and cancer trials accept death so willingly and see it as a part of a “successful” trial. At the same time, I have to acknowledge that ultimately, trial and errors of this nature can eventually lead to a cure or treatment that saves many lives in the long run. At the same time, I’m conflicted whether to accept the deaths of some to save the deaths of many because a death is still a death, and it is not something to “accept” as collateral damage.||1. Could there be a more efficient yet reliable testing strategy that does not rely on deaths as part of its success? 2. How are medical professionals influenced to convince their extremely sick patients to part take in RCT cancer trials, and how they did they feel when and if they find out that their patients died because of it?|
|5/23/2013 10:32:19||This article was written by S. Lochlann Jain, an Associate Professor of Medical and Legal Anthropology at Stanford University. It was published through the journal Public Culture, in 2010. This piece was written for other anthropologists and medical professionals interested in learning about the complex, dangerous, profit driven side of clinical trials. The introduction of the piece offers guidance into the methods and strategies (mostly bad) of clinical trials on cancer therapies in the United States. Lochlann focuses on the way trials treat subjects, the factor of mortality, and the necessity of death that is an integrated part of the system. This text uses citations as further bits of information that is not fully described in the text. Other studies are summarized in the footnotes as well as gratitude for ideals and guidance. This article would be very unpopular among companies which gain profit through the culture of cancer, such as pharmaceutical industries, some doctors, and the creators of the trials. Supporters would be among cancer activist, as the article points out the demoralizing, futility, and unaccounted for suffering faced by the vast majority of trial participants.||Empirically this article is about cancer trials in the US and the cultural construction that created and now sustains them. The study focuses on the practices in the United States, on a regional level. Using statistics and overarching assumptions about individual sufferers and specific cancers to present the greater issue of the reality of cancer trials. There is a comparison between the way clinical trials are presented to and used on patients vs. the reality of the trials and the meaning behind the data that is collected. Another comparison lies within the conceived hope offered by the trials vs. the necessary death required.||The main purpose of this article is to expose and understand the reality of clinical trials for cancer treatment. Much of the focus of the article looks at the subjectification of individuals with cancer, and the lack of acknowledgment of the suffering inflicted by the toxic drugs. Lochlann uses statistics as evidence to the frightening number of casualties that are an inherent path of the clinical trial system. She points out the manipulation of the patients, desperate for hope, that get roped into these trials. The cancer culture of the US has glorified a constructed sense of duty for those affected by advanced cancers to subject their dying bodies to these tests for the sake of the future generation. In this study health is used as a connection to humanity, able to be exploited and manipulated by outside forces. Lochlann confronts the topic of an illness enterprise, where sickness is used as a marketing tool and the patients as key pawns in the economic stability of the market. In the US cancer has been transformed from a devastating disease into a booming economic heavyweight where people have the possibility to strike it rich off the suffering of other person.||The method of data collection for this piece was primarily statistics. Lachlann used the data resulting from several cancer clinical trials to draw conclusions on the state of the system. Rather than looking at any individualistic quality such as speech or thought, the study focuses on the results of these tests and the mentality of the population of the US as this system continues to function. A cultural construction of a cancer war had been erected in the US and fuels the raging economy of clinical trials. People are grouped into two main categories, those fighting cancer within the clinical trials, and those dying due to them. Through the results of the trials Lachlann is able to make her argument as it pertains to the increased suffering caused by clinical trials; the necessity of mortality to gain results and the lack of strategy for patient comfort over knowledge. This essay it structured around the fact and value that human life is not simply a tool able to be manipulated and pushed to the limits in the name of science. Cancer should not be seen as a subjective evil requiring ‘aggression’ and usually fatalistic intervention, but an address to the person affected, to provide the most comfort for the individual suffering rather than another sacrifice to future sufferers. I believe some more textual evidence from firsthand accounts of patients undergoing clinical trials, their thoughts and feelings towards the matter, would benefit this paper.||While I found this entire article to be simultaneously fascination and abhorrent; the section on page 107 was particularly disturbing. The reality for the necessity of mortality needed for the clinical trials is a difficult thought to process. These trials, offered as the last hope in most cases, are based and conducted solely with the hope of a greater amount of death on one side than another. Lachlann brings this into perspective by defining the method as a contest, a battle to see which side will lose more victims first. The only legitimate way to see the success or failure of a particular treatment is through death. Cancer patients are transformed into subjects, many of whom are destined to die even with the treatment, and a greater number of whose deaths are hoped for. Without death there are no results. Patients are draw into this disturbing system through the created culture of what is means to have cancer. In the United States the battle over cancer has become as deeply rooted into our thoughts as the disease itself is ingrained within the body of its host. To have cancer is to fight cancer. This glorification of the disease, processes, and treatment pervades every aspect of patient cancer interactions. Patients are in an essence obligated to battle their disease, to survive and triumph or sacrifice themselves to the greater good and future sufferers.US culture has shaped cancer into a militaristic endeavor, a war within the body, and these clinical trials offer glory to an “unfashionable death”. By participating in trial drug tests patients subject themselves to great suffering in a desperate attempt to save themselves or others who will come after them. They give their bodies to science, to a system that is incapable of considering suffering, and which more often than not ends in failure.||What are the ethical ramifications and policies regarding clinical trials? How is it that some of these drugs that are set as standard cancer therapies are actual harmful to the patient?|
When did beating cancer become such a main stream phenomenon? Of all the life-threating diseases why is cancer one of the few with a cultural mandate to treat and ‘battle’ to the very end?
|5/23/2013 11:10:01||The article “the Mortality Effect: Counting the Dead in the Cancer Trial” was written in 2010 and published by Public Culture. It is written by S. Lochlann Jain, who is an associate professor in the Anthropology Department at Stanford University, where she teaches medical and legal anthropology. This article is written for researchers, anthropologists, cancer patients, and physicians, especially oncologists. The audience can be inferred from the use of quotes by the author from all these subjects. The author promises to analyze the use of RCT as a method in which people either live or die, and which helps us understand disease and mortality. This text may be supported by cancer patients who have participated in randomized controlled trials (RCT), because this article makes more people aware of what these patients experience. This article may also be supported by physicians who feel that RCTs are morally or ethically wrong. One the other hand this article may not be supported by researchers who are seeking patients to participate in their studies, as well as physicians who fully support the research from RCTs. Citations are used to quote the researchers, physicians, cancer patients and even other fellow anthropologists who may have written supporting evidence for this article.||This article is about randomized controlled trials, and how the subjects, in this case being the cancer patients, become the objects of this method of research. Due to the prognosis for most cancer patients, that they will eventually die, RCTs seem to take advantage of this vulnerability of patients to give them hope, while science can get an advantage. This article focuses on the points of view of individuals towards RCTs. The time of the study is not very clear, but the author does mention working with cancer survivors from 2005 to 2009. There is a slight comparison between those cancer patients that die while participating in a RCT and those that survive. Those patients that die just become data, while those that survive are used as evidence that a treatment works.||The author mentions that she is not arguing against research, or whether cancer itself or the treatment kills the patients, but rather analyzing how the trials of research use the hope of cancer patients to understand the disease better. In other words these trials use terminally ill cancer patients in order to understand cancer better and advance towards the possibility of a cure. The politics of this disease that arise from its harsh treatments are assuaged by the feelings of hope, charity, a good death or the possibility of a cure. The RCTs focus on these feelings to make people feel like they are heroes for contributing to the well being of others, especially if they are not so lucky themselves. As evidence to her analysis, the author uses citations from researchers, physicians and other anthropologists. She also quotes some of the responses from the work she did with cancer patients, to portray how these individuals feel. She also mentions a play by Margaret Edson to show the difference of a cancer patients experience from the perspective of the patients themselves versus that of the physician. This once again brings up this idea of the cancer patient no longer being a subject, but rather an object used by the randomized controlled trials to generate “useful data”. The physician becomes more interested in the data that will be obtained, and forgets about treating the patient holistically. For the purpose of this article, it is therefore assumed that the RCTs are a sense of hope for cancer survivors. This is the base assumption used for the author’s argument.||The methods used for this article are not very clear, but the author does mention working with cancer patients from 2005 to 2009. She also mentions that many people talk to her about cancer. Therefore I can assume that the author used evidence from her discussions with physicians, researchers and cancer patients to form her argument. At the same time she quoted the work of other anthropologists and researchers that could attest to her argument. This article not only looked at what people thought, but also at what they said. It mentions how cancer patients thought that their participation in these studies would be beneficial for the future of medicine and a charitable act. These patients would say such things regarding how they were going to die anyway. It is therefore assumed that the individuals participating in these trials believed they were doing a charitable act for society. A little more information on how the author did her research would strengthen the text.||The passage that frustrated me is the third paragraph on page 112, where the author talks about how harsh treatments for cancer are justified by future benefits to medicine and society. In my opinion, just because individuals will eventually die, does not give society a reason to put them through harsher treatments, pain and suffering. When a person only has a short time to live they should be enjoying the time they have left, relaxing and being treated with dignity and respect. I do believe that we need the volunteers to benefit the future of medicine, but the research should still uphold to the moral and ethical value of a human life. As the author mentioned, these dying patients become objects in trials, and numbers in the data generated, but instead physicians should be focusing on the physical, emotional and spiritual well being of the person, and not hoping for the death of the patient.||What value are we giving a human life, when we use terminally-ill patients in research experiments?|
Who gets to decide that the RCTs on terminally-ill patients are justified?
|5/23/2013 11:35:58||The author, S. Lochlann Jain, is professor of legal and medical anthropology at Stanford University. She got her Ph.D in the History of Consciousness from UC Santa Cruz (a graduate program I was planning on myself, until it was discontinued). This year, she's publishing a book: Malignant: How Cancer Becomes Us. This text, however, was published a few years ago in 2010 in the transnational journal Public Culture. It can be inferred that this text was written for an academia and theory-literature audience of students, professor, and researchers in fields related to medical anthropology. In the introduction, Jain promises to explain her concept of the mortality effect and how RCTs differ in reality from their outward representation.||The text looks at randomized cancer trials (RCTs), their quantification of human lives, and effects on the facts, roles, and actions played out throughout cancer culture. It is located in America, on the mostly national level, and examines some nuances of how the cancer culture in this country functions and affects lives. The scope focuses not so much on individuals, but more on case studies of RCT's, specific institutions like Oxford Biomedica, the norms around general roles such as cancer patient or oncologist, and on the national use of certain technologies in treatment such as chemotherapy. The text makes many comparisons: normal chemo to aggressive chemo, patients to doctors, the false hope of cancer culture versus the grim reality of RCTs, cancer as a biological disease versus a political disease, and the representation of known science versus its unknown open-ended reality. ||The main point of this text seems to be to challenge the notion that RCTs are as objective and functional as they are advertised to be. The text also explains various ways in which RCTs shape understandings of cancer types, the roles that players ought to occupy in treatment, and what treatments are encouraged and performed. Throughout the argument, the author pulls from historical case studies of cancer trials that demonstrate how facts of cancer have changed over time, how patients have been dehumanized through experimentation and/or treatment, and how the veil of science obscures the gravity of life and death in these RCTs. The text illuminates how even when RCTs are said to be conclusive and successful, the samples of participants are either too small or too variant to actually be conclusive. Sometimes, conclusions are drawn that are blatantly wrong and even harmful to patients, as evidence by the inclusion and subsequent removal of the toxic treatment drugs anthracyclines from chemotherapy treatments. A big overarching point of Jain's is that the way that the cancer industry functions at present, people are treated as the disease that they have, not as people, and this allows tragedies such as death to be treated and witnessed impersonally by medical elite. ||The author doesn't seem to have engaged in any interviews for this text. Instead, it seems to be a review paper about some of the history and implications of certain practices and technologies within the cancer industry. The text cites many papers and cancer trials, which must have been Jain's main sources of information for this text. The author also thanks audiences at UC San Francisco, the University of Michigan, and Harvard University, and from this we can infer that she gave talks on this subject in those places and received helpful feedback for this text. She also thanks a list of individual people, who she identifies as the editors and reviewers of the journal Public Culture, along with "the many people" who conversed with the author about cancer. ||(pp. 101-102)|
In these pages of the text, Jain revisits a paradox of the cancer industry – a paradox that I didn't understand until it was reworded here on page 101. She is explaining how RCTs cannot be conclusive until they end, the experimental treatment group of patients goes off the drugs, and they relapse. By relapsing back into their cancer after stopping the treatment drug, the patients reveal that the drug was the cause for their improved health. Jain is commenting on how paradoxical it is that in an industry that claims to be searching for healing patients with cancer, RCTs create this loophole in which doctors might actually root for patients to relapse and, likely, die. Furthermore, Jain highlights how these deaths are represented as some sort of heroic or noble sacrifice for the greater good, for future generations, for the progress of science.
This passage really stuck me because I immediately imagine how impossible it would be for these patients to actually feel like heroes undergoing experimental treatments. They are close to death, they are being treated with toxic substances, and in some cases they start to feel better in these trials. I can only imagine that the struggle of participating in an RCT is a rollercoaster of physical pain, strong emotions, hope, healing, relapse, depression, fear, and existential struggle. Perhaps it is only when patients are finally participating in a cancer trial that they realize how misrepresented RCTs really are. I wonder at what point they realize they might die, whether they know that their "care-takers" might be rooting for their death, and whether they feel they really are doing a service for future generations.
|How might publicly representing the shortcoming of RCTs both help and hinder cancer treatment nationally? |
Do cancer sufferers have the right to an outlet (such as RCTs) through which they can believe they are being of service, even when they're told by doctors that their condition (and, subsequently, their life) is a lost cause?
|5/23/2013 11:52:09||This article was written in 2007 and published in the University of California Press. Sarah Lochlann Jain, the author of this text, is a researcher of anthropology, in regards to injury in particular, at Stanford University. This essay is written for other anthropologists because of the cultural ties made from part of our society. In the abstract section of the paper, the reader is promised an understanding of space and embodiment of cancer as it inhabits the body and how that body inhabits society. There is no clearly defined conclusion but the reader does finish the paper seeing aspects of society and cancer that, I personally found, that I had never thought of before. A doctor that conducted malpractice on a patient, would probably read this paper and feel ashamed, thus they are the enemy. Citations are in the form of footnotes but the interjections from outside sources come from literature, scientific journals, and statistics on cancer.||This text is about cancer in the United States, the culture associated with cancer, and the impacts on people’s lives of those that have cancer. The text looks at where cancer is in the body, mind, and the place it takes up in our culture. The scale is of the nation but in particular the illness of cancer and the culture created out of this illness. The time of this study takes up to 18 months. There are many comparisons; those with cancer and those that don’t have it, those that beat it and those that don’t, life versus death…||This article aims to show that there is this vague, or mysterious, disease that has been made a material object through prognosis and what the future and past holds for the patient. Showing the culture and material attachment created because of the disease preforms the argument. The evidence for the argument comes from patients, doctors, trials, and even plays and poems. The argument is robust in my opinion because I find that it is bringing forth an idea, rather than fighting a previous one. Jain tied cancer and death in our society together in this article by showing the reader all of our conceptions that we have ever had or seen on the topic in one article. The key concepts that are used is that no one wants cancer. I feel that this is a pretty universal human nature assumption. Cancer is an illness, a disease, the most deadly, and the least understood.||I found this quote to perfectly answer this question; “This work is based on an… ethnographic study that included patient and physician observation; participation in support groups and retreats for people with cancer; and interviews with patients, physicians, attorneys, and counselor,” (Jain, 2007, p. 77). I am not sure what kind of questions were asked in the interviews. If I were to guess, I would say that the questions looked at what the thought process was behind notions of cancer and dealing with it as well as why people may have did, or not did, what they did, or didn’t do. The main assumption that shaped the inquiry was in regards to the universal unwanted-ness towards having cancer. I am not sure what would strengthen the text other than maybe the perception that a love one of someone with cancer has towards the disease and the transformation that their life went through upon discovering the cancer in their loved one.||“Caner is creepy,” (Jain, 2007, p. 80). This is so true. Cancer is this unknown thing that grows within us and only once we are really feeling ill to we go to the doctor and come to understand that caner is the reason we are feeling so bad. We live in a society where everything causes cancer. Exposure to the sun causes skin cancer but so does the sun screen that we wear. It can be genetically passed down, or caused by the environment that we live in. It can come from all these different places and is such a common cause of death in our country, yet we have no cure, just a miserable way of trying to fight it; chemotherapy. It is so creepy because we do not know that it is present in our body until it is too late. Then there are all these malpractices associated with finding the illness that just make it that much more creepier. This quote really encompassed all cancer is in our society, creepy.||1. If chemotherapy is so painful, the question of the quality of life comes in to play especially when it comes to the understanding that the likelihood of survival is slim?|
2. Why does our society place so much emphasis on cancer when there are other diseases that also lack a cure? What is it about cancer?
|5/23/2013 11:53:44||Considering this is a clinical trial I would assume that this text was written for medical personel. I can infer this because it says that its a clinical trial also because the language is very in depth and complicated so I wouldn't think that it is meant for general audiences. The introduction only serves to promise to explain and elaborate about RTC and the implications that it has on human life and on death. I thought that the conclusion did just that. It didn't push one way of thinking or the other and it didn't push me to think one way or the other. It really left the reader with a lot of information from which they can base their own opinion on.||This study is located in the United States on a nation-wide scale. There is a comparison between whether the risk of using new cancer drugs is worth the possibility of worsened symptoms or death in the trials or if we don't perform the trials whether more people would end up harmed because we won't have drugs to administer to people who already have cancer.||I'm not exactly sure whether this article is for or against RCT testing methods or against it, but I feel like its more of an empirical view of each point of view without necessarily saying one is better than the other but more of an explanation of the moral and scientific standards that each allows. With RCT we are able to find out what drugs are more likely to be successful and which are not as likely or are fatal. This however leaves humans that are already diseased and under stress from cancer to be guinea pigs to be used as experimental subjects for any number of dangerous chemicals and hormones.||Ethnographic studies and research contributed to this text. The majority of this paper looks at what people "do", but is coupled with the moral concept of why or how they can be doing this to another human being. Assumptions of moral character and weighing the lives of many versus the life of one shape the inquiry for the majority of the text without actually taking a stand point on either side of the spectrum. People were grouped with whether they thought RCT is necessary and right or not.||On page 90 it says, "Together, these effects result in a sort of ghosting of the lives that move through these trials: deaths maintain an everywhere and nowhere quality, even as they hold statistics and results of the trials in place" I thought that this was very interesting because these trials are all about the prevention of death in the mass society, however the deaths that are caused by the drugs during the trials are swept under the rug for the "greater good". I'm not sure where to take a stance in the kind of situation or circumstances because I see both sides of the spectrum and the arguments are both well rounded and arguable, but I don't know which is more right if that makes sense.||Is Jain actually taking a stance for or against RCT?|
If so what is that stance and how can she justify it when both sides of the spectrum hold such heavy burdens?
|5/23/2013 12:00:07||The text circulates in the U.S. based on the trials and culture in the U.S. The author is S. Lochlann Jain, an academic in the field of medical anthropology, where the time of her study in the early 2000's. The audience is other members in the academic field and can be inferred by the footnotes where she thanks other academics, and also by how the text is articulated in a more academically advanced fashion. The introduction offers to explore how RTC creates a "ghosting" of lives through through its misrepresentation to patients who are in a cancer culture. She tries to produce a better understanding of how cancer is "lived and reproduced in the U.S." and she does fulfill her thesis in exploring this phenomenon. She uses other ethnographies to better support her claim throughout the text.||Emperically this text is about how RCT's are using hope to gain volunteers to undergo dangerous cancer trials that has a sole purpose in gathering data on who dies faster from what, while still leaving out this information to the public through clever wording and statistics. This research is located in the U.S. throughout the nation to all people involved with the dance culture. the time of the study is through the late 1900's to the early 200's. There is a comparison between trials, and death rates as well as statistical wording to real life wording, where deaths are expressed more explicitly.||The main goal is to have more people better understand what the consequences these trials are done with, and whether to understand if it is worth the human cost. There is an expression of whether these trials want to cure people and how by the amount of times they do these trials there is somehow more capitol reproduced but with the explosive cost of dying cancer patients with minimal ability to get cured. There is a question of whether this is ethical and if it is for what greater good and what cost? The argument is that there needs to be a reform in these trials and how it should be done. This could be challenged in that there is something being done over nothing.. There is an assumption that even in the U.S. that capital is worth more than the lives of its citizens. There is also an assumption that any treatment is better than no treatment at all. It can be universal to all illnesses.||Ethnographies and statistics were used as a method of study and analysis. There were no explicit questions asked which should have been done to better support this study. There was explicit inference to the theory that trials are use to create capital through the deaths and survivals of patients which shouldn't be done. there needs to be another way to gather data. People were group by how dangerous and costly the trials were and as well by how ineffective they were. The values assumed is that people try until they die, and trying leads to dying. There needs to be more interviews.||"In this remarkable history of breast cancer treatments, James S. Olson describes the women who had access to the latest most aggressive tratments of their age as "a sisterhood of guinea pigs" suh treatments involved the removal of adrenal and petuitary glands and the cracking open of the sternum to remove the internal mammary chain...." (97). There is something that bothered me in this quote. this seems to point at the women for undergoing this treatment instead of asking why the doctor feel they have the authority to do such risky procedure. Who gave them the right? Also I was curious to know why the women went through the process was it because of the inability to have other options financially?||The biggest question is who exactly determines the cost of all these lives? Wy do people continue to go through great lengths? Are they paid, or do they do it because they have no other option or coverage? Why is there a lack of coverage for the overgrown population of cancer patients? Instead of this being about hope what about option and ability, or the notion that you have to try to "survive" ?|
|5/23/2013 12:03:59||This article was written by S. Lochlann Jain, in 2010 and published in the Public Culture academic journal. This was more than likely written for her peers, judging from the tone of the article. Jain promises an analysis on RCT's and their role as a social construction. The conclusion does fulfill the promise nicely. Jain uses citations liberally, but does not embed them, instead footnoting them after each page.||There does not seem to be any particular location of study. The scale is an institution, of both general medicine and oncology. She seems to have gathered research about this topic since the early 2000's. There does not seem to be an intense comparison of one institution to the other.||Jain's goal seems to be an "an analysis of how these cancer deaths, removed from particulars of individuals, produce paradoxical subject positions for the vast range of players involved in cancer culture." However, Jain does seem to imply that this paradox needs a larger portion of attention paid to it, as opposed to letting RCT's be the gold standard of advancements in "cancer cures." The argument is relatively explicit. Jain provides ethnography and literature from both medicine and social science to back up her points. The argument is quite robust, I would say. Some key concepts used are ideas like RCT's, "counterfactual disjuncture," etc. These concepts are both challenged and verified: RCT's are challenged, but not at the level of their meaning so much as their purpose. Illness is used in the same capacity that biomedicine uses it; however, it is the other "illnesses" caused by some cancer treatments that are not taken into account.||Jain uses ethnography and research to provide evidence for her analyses. It does seem to look at what people both say and do, as an outward portrayal of their intentions. I think the assumption that cancer is a natural disease is an assumption she had to have made. People were grouped and categorized into (usually) either doctors or patients. I think more interviews would strengthen the text.||"I am not arguing that the personal and social costs of cancer research are too high (though they are), and I am not attempting to determine how such an assessment should be made. I am not arguing that people are dying from chemotherapy and not from cancer (though many do)... (Jain 93)"|
Jain inspired me with this passage. I found it very admirable that, although she asserts that what she is doing is merely an analysis of an evident paradox in the way RCT's are used, she still is not afraid to provide the simple truth (air-quotes) about what she feels. Chemotherapy, having had multiple family members go through with it, is a terrible treatment that is always taken for granted as a "necessary evil." However, the suffering people go through to purge a cancer sometimes seems to be more than what is worth it, especially with the highly experimental phase some of these drugs (such as anthracyclines) are in.
|1. Why are cancers considered "natural," when what we see as causes of cancer do not fit the description of "natural?"|
2. Is the idea of "living longer with cancer" in itself a paradox? Especially when the quality of said life is deeply lessened?
|5/23/2013 12:22:51||S. Lochlann Jain is an associate professor in the anthropology department at Stanford University. Her areas of research primarily include medical and legal anthropology. S. Lochlann Jain is the author of The Mortality Effect: County the Dead in the Cancer Trail, an article published in Public Culture, a journal for cultural studies in 2010. The article was primarily written or other anthropologists and it discusses the problems encountered in clinical trials testing’s, she specially discusses the renal cancer clinical trials. The author first discusses how clinical trials in groups are given standard treatments. Groups of people will be divided into groups and given several drug treatments, while one group receives a placebo treatment (no drug). At the end of the study the survivor’s will be counted, side effects measured, and a decision made about whether to take the drug to the next stage of testing. However there are many problems that occur with this though. The author promises to use analyses of how these cancer deaths produces inconsistencies in logic in cancer trials. The author also discuses how patients an oncologist are incorporated into the “cancer culture.” The author’s main goal is to discuss how an organized structure like clinical trials understands its patients, “mortal subjects” so that it produces hope, progress and futurity in a way that causes ethics of drug treatments and intervention to be re-thought.||The article is written to discuss human clinical trials in the United States. The time of the study is unknown, but the author does acknowledge several people from various universities in one of the footers. There are many comparison made in the paper that include, prolonging survival vs quality of life, life vs death, placebo vs treatment groups, recurrent cancer vs curable, efficacy vs survival prolongation, ethical tests vs non ethical tests, effective vs multi-million dollar drugs, dying due to cancer vs cancer due to chemotherapy, rich drug owners vs poor patients.||The main argument the author is making is that there is a terminology, “mortality effect,” which is a term she is referring to the patients that participate in the trial. Where death is inevitable and is everywhere but maintaining statistics is most important. She first compares patients and oncologists relationship and how they both participate in marches for cures; fund-raisers for children, but most importantly carry with them a concept of “hope.” Cancer has become a protocol-driven treatment, but continues to offer hope and a future, which all come together to form the “cancer culture.” Clinical trials are also paradoxical, in a sense, because the trials hold counterfactual hope and histories yet early detection and relapse is possible. The Gold Standard is the RCT method that author refers to in which two groups are given two different treatment (placebo and drug) and are compared in efficacy of treatment, which have controls for age, race or disease characteristic. In these studies, treated patients get better and untreated patients get worse, but overall these treatment have added very little to survival rates, and if the treatment is toxic, then that is just attributed to “toxic cost of cancer.” The people in these studies are just bodies in an larger cultural cancer effort. Yet cancer therapies continue to be experimental, despite their efficacy. Patients are referred to as “like a guinea-pig.” However, the author argues against some of the methods, for instance, giving some people a drug while others receive a placebo, or letting cancers grow to see its progression, and doing this on large groups of people so that it is statistically significant. Many times clinical trials are performed on only those drugs with multi-million dollar contracts, while those that are promising but cheap are not continuously tested. In the mortality effect section of the article the author discusses the fact that RCT lies in death of patients. That is, to prove a drug works is to prove that others, not on the drug, have died. Current patients are asked to suffer for the sake of future patients, in case there is a slim chance of hope and cure. People choose to do it, for the higher goal of helping others. But when living or dying is the only thing that is measured, and then suffering is non-existent. However, cancer deaths provide financial and time support for the continuation of cancer research. Even when a cancer is successful the quality of life changes drastically, but because the chemotherapy kills everything (cancer cells and normal cells) it is a success.||The author uses ethnographic, literary, and historical research. The author discusses such topics with various friends and cancer scholars from various institutions in the United States that I imagine are either oncologist or clinicians partaking in clinical trials. The author also uses both patient and physician stories who have gone through the cancer culture. That author asks various questions throughout the paper to prove her point, however, I did not notice whether she asked her interviewees questions. The historical, ethnographical, and interview data is analyzed directly.||The paragraph that most frustrated me was found on page 99-100 and it discusses the unethical problems with cancer trials. To begin with its unethical to provide a randomized group of people with a placebo drug for a cancer that already has a current form of chemotherapy, while the other drug receives the trial drug. It is also unethical to let the cancers grow so that progression could be measured effectively. What bothered me most about these paragraphs was that many promising drugs are not tested any further because they are inexpensive, while drugs with multi-million dollar contracts/costs are continuously tested. I found these ideas very disturbing. Having worked in a research laboratory for various years I understand the need for statistical significance in science and research. Labs/clinical trials need statistically significant results to publish; more publications mean more funding, and more funding means more recognition and in effect more publications. Its an ending cycle and its is disturbing to think that money in the end controls the fate of life. Science and medicine is not political. Whose responsibility is it to decide who deserves treatment and who does not? Why are people given placebo treatment for statistical significance when the current drug should be less effective then a new drug they are trying to test? Who funds clinical trials, and if it is a private pharmaceutical corporation, then why is this not government regulated?||Whose responsibility is it to decide who deserves treatment and who does not? |
Why are people given placebo treatment for statistical significance when the current drug should be less effective then a new drug they are trying to test?
Who funds clinical trials, and if it is a private pharmaceutical corporation, then why is this not government regulated?
|5/23/2013 12:32:29||S. Lochlann Jain wrote this essay in 2010. She is an associate professor at Stanford University where she primarily studies the concept of injury, stories involving injuries and the causes of injury. The essay is written for an educated reader, as she tends to use complex words. Her audience is also anyone involved in caner research, random clinical trials (RCT) and also other anthropologist. This can be inferred by her statements where she tells her audience that she is not defending nor admonishing Random clinical trials, she is simply just showing how the practice of RCT is interesting and fueled by ideologies of hope for a better future. I saw these statements as her trying to avoid enemies. She is light on citations and mainly uses footnotes however she does draw on other anthropologists, philosphers, and uses statements for people associated with cancer research in order to highlight her points. Her essay focuses on elucidating the practices that make the justification of using chemotherapy on patients an acceptable practice and I felt she achieved her goal.||The essay is about Randomized clinical trials and how they function within the realm of cancer research. The essay looks at cancer research mainly in the US where biotechnology is very prevalent however she does include evidence from research that was performed in Italy. The scale of her essay is the institution of cancer research and all players involved, from pharmaceutical companies to oncologists and the patients themselves. No comparison is taken her point is just to show the inner workings of the cancer research process.||The goal of Jain’s essay is to show the reader how RCT’s create this cancer culture that nullifies the individual and brings meaning more numbers and the population level success of a treatment. She highlights how cancer research fosters hope in the individual that they will be helping to find the future cure for a cancer, which they may have no hope of surviving themselves, and how this ideology of hope gets people to do drastic things to themselves for the “greater good.” She shows how the perception of cancer research being a “benevolent practice” has pushed cancer suffers into a position where they are questioned for not going through with drug treatment, where they are almost expected to do whatever it takes to “fight cancer” even if it means personal injury or death. Jain is interested in understanding how this mentality is created through RCT’s and how it has affected cancer culture. She proves her point by looking into the history of cancer research and trying to understand how it has come to be that people are expected to take such strong medications when such low survivorships are reality. Her particular look at anthracyclines showed how RCT research works. The results from studies found that anthracyclines raised the survivorship by 4% and this number was enough to indoctrinate it into all forms of breast cancer treatment. Disregard to other variables that may affect the actual survivorship rate such as type of cancer or demographic were ignored until thirty years later when a researcher stated the survivorship advantage was only applicable to certain people. RCT allows researcher to completely ignore human difference and focus instead on group affect.||The author states that her research included ethnographic, historical and literary research in order to understand how cancer culture has evolved. She mentions that some interviews had been conducted and her focus of this research was mainly the language people used to talk about RCT’s and cancer research. She focused for instance on the language Dowsett uses when talking about cancer research and how word choice solidifies the mentality of cancer research. She makes the assumption that researchers believe in their research and patients want to get better and looking at how those two thoughts create the cancer research dynamic.||I found the analysis of Mitchell Dowsett’s quote to be very interesting. When I originally read the statement nothing unusual about it occurred to me, most likely because I am engrained to take comments made by scientists’ as factual and not unusual. However the analysis of how his words made me see how these statements solidify the de-individualization of the patient. The concept of RCT’s taking away individual differences reminded me of the argument Mol and Law were making about diabetes treatments not actually serving people but rather an unattainable average. I found the idea that researchers think the only important data they attain from cancer research is the survival data that can only be attained through death or reoccurrence statistics. This frustrates me because then the motive behind the research completely ignores the person as shown in the text. This made me think of the whole idea of averaging medicine dosages and how they may not be good for people due to the side effects. Unfortunately with something such as chemotherapy patients aren’t allowed to play with the doses they are given because it is controlled by the doctor and not taken in the comfort of your our home where surveillance is not present. This makes me wonder about motives of Dr.s and why they are not interested in tailoring cancer treatment to the person.||I am confused as to how “cancer marches, fundraisers for children’s camps and clinical interactions between doctor and patient parry the concept of hope”? How do these events “ward off hope”?|
There has been talk about research focusing on genetic tailoring of treatments for patients. How would this affect the RCT?
|5/23/2013 12:35:39||The text was written by S. Lochlann Jain, a professor of anthropology at UC Santa Cruz. The piece we read, “Mortality Effect” is part of a book, “Malignant: How Cancer Becomes Us. The most likely intended audience is one that is interested in cancer research. Or, an audience that is interested in RCT. The introduction promises to address cancer research methods, particularly how it is questionable ethically. By the end of the text, Jain address this issue practically condemning the practice.||The object being studied in this piece is the way RCT is done. It studies how people are questioned and get involved into RCT. Then it analyzes the ethics of RCT, and how it is working with human lives. By the end of the research there are indirect comparisons of the ethics of the RCT process, and how it is involving human lives.||The main argument of the piece is to challenge the current way of doing RCT. Thruoghout the text, the author describes how RCT is conducted. It even begins with how cancer patients get involved. By the end of the paper, Jain clearly states her argument. She states that RCT should genuinely be taken a deep look at to see if what we are doing to human beings is ethical.||Jain clearly states toward the beginning of the article the methods of which data was collected. Jain states it is ethnographic, historic, and literary research that allows the formulation of data and to make up the argument. She mostly uses observations to fuel the argument.||“The history of using cancer patients as guinea pigs for experimental treatments with radiation and chemical poisons sometimes with their consent and sometimes not, sometimes leading to efficacious treatments but usually not, often producing enormous wealth for someone else raises critical questions about the use of dying humans as experimental subject” (Jain 28).|
This quote is an interesting one that I wanted to analyze. Here, we really see Jain’s subjective view on the topic, which I like, because it helps the reader understand the argument better. Moreover, I believe the statement Jain makes is an extremely powerful one, that really makes people think about the ways RCT is done. Personally, I completely agree with this statement by Jain. We do need to re-asses how we conduct RCT, and how patients are treated. The questions raised that Jain mentions are important topics to discuss.
The way I feel on the topic is that this type of medical research is completely un-ethical. The use of dying cancer patients as human guinea pigs for experimental treatments is not okay. This type of treatment of human beings is completely un-ethical, and needs to be taken more seriously in the medical world, as well as the everyday world around us. Lastly, as it was briefly mentioned after this quote, RCT should also help us ask questions about the moties of the pharmaceutical companies. Are they out to help us? Or are they out for themselves?
|What could the author have done in order to make the text more clear to read?|
Is RCT an ethical way of doing trials with cancer patients? Why or why not?
|5/23/2013 12:43:27||The Mortality Effect: Counting the Dead in the Caner Trial was published in the Public Culture journal in 2009. S. Lochlann Jain, the author of the text is an Associate Professor in the Anthropology Department at Stanford University. She teaches medical and legal anthropology. She conducted her PhD in the History of Consciousness at University of California, Santa Cruz. Her research is devoted to understanding how the inevitable injuries of mass productions and consumption are distributed and justified in the United States. She has received the Cultural Horizons Prize from the Society for Cultural Anthropology. This article was written for anthropologists studying health cultures specifically cancer and related topics. From the vocabulary and language of the text it can also be inferred this text was written for those knowledgeable in cancer trials, cancer patient can also find this text useful if they were trying to decide whether to join a trial or not. The introduction alludes to the article been an examination randomized control trials and the infinite time line and life-or-death binary of mortality effect it structures. She also promises to look at the logics and paradoxes in the culture of these trials. Yes the conclusion fulfilled what the author set to accomplish. There were no symbol of friends in the text, however, the drug companies, principle investigators, and doctors involved in the research and recommendation of cancer treatments are viewed as enemies. Jain includes citations from other authors. Many times she used it to provide examples of her points or to clarify some statements.||The article examined cancer trials during various phases in the United States. The randomized control trial (RCT) is analyzed as a representational form in which people live and die in. People also gain an understanding about the disease, medicine, and mortality. Using RCT the author shows how cancer patients are constitute as material and conceptual objects and subjects. In RCT one group of patients receive the new treatment and the other group receives the standard treatment or the placebo. Individuals in both groups are not aware of which groups they are in until the end of the study. This is expanded by looking at the language and how sentences are phrased when recruiting patients for these trials. Also, she examines how some patients are feel the cancer is their faults at times. Also she examines how doctors provide or suggest certain treatments for varies cancers to patients at different stages of their illness. For many treatments, subjects usually hired overseas for testing, however for cancer, the subjects are Americans. These experiments not only include Phase I, II and III studies, but also are done on late-stage cancer treatments. The research was conducted in the early 2000s. The author compares how patients in the two different groups may view the study they participated in after it has completed.||RCT plays a role in giving false facade of progress for patients while drug companies and doctors use these cancer patients as testing materials or like “guinea pigs.” Patients are often encouraged to participate in RCT mostly by their doctors as sort of a last chance and only option. Also information on pamphlets paints a fantastic view of the studies and potential benefits from it. However patients are not truly told the truth about the experiments. The researchers seem to make the studies appear as a miracle cure, that the drugs will eventually help each patient but really many times the studies are stopped because of high mortality rates during the studies or the drug is shown to have no positive effects on the patients. Through RCT hope and future orientation are produced. The author argues that some of the cancer patients do not survive long enough to see the drugs available in market. Also majority of the cancer drug experiments do not prolong survival, somehow, patients are provided with this information as if it was a guarantee. Many people still have various views on trials, to participate in it or not to. There is an uncertainty paradox in cancer culture. The possibility and impossibility of early detection, they mystery of relapse, its inevitability, and predictability all plays a role in the difficult stance many have to take. The pamphlet for instance as in the case with TroVax, does not offer information on how hard it is to get into a trial, or details of chemotherapy options they would have to choose, or the survival statistics shown by physicians asking patients to choose one. The practice of RCT is so embedded that often a patient’s statement of “I need a cure” is instead replaced with “I need a trial.” Even though physicians’ note that RCT has led to improved patient care, historians have shown it is difficult to justify this claim.||Jain conducted ethnographic, literary, and historical research. In the first footnote in article, the author thanks the many people who have discussed cancer with her. Later she stated some information she had gathered from many people about actually truths of cancer experiments not specified in pamphlets. From this section, she most likely asked patients question such as what did their doctor said when they brought in a trial study for the physician to see if the study or drug could help them. Patients are classified differently in studies. They can grouped based on the disease stage and pre- or postmenopausal. Some of the cancer patient inverted their illness to themselves and felt they may have brought on the illness. Also many patients wanted to participate in aggressive studies. This shows the kinds of language that has become common toe point that patients are asking for aggressive treatment despite the harmful side effect they could experience from these treatments. The value of health and illness is important. The people volunteering themselves to these studies sometimes feel it is their last choice or hope for getting better.||On page 102, the author states that “The RCT asks cancer patients to undergo hardship for future patients for a slim hope of a cure, or to do one’s bit for science and humanity. One person described to me how her mother participated in a trial for years, collecting and freezing her waste, explicitly as a noble endeavor done in the interest of future generation. This model relies on the promise of future progress and depends on an alliance between patients and future patients… RCT offers the opportunity to have one’s disease and death stand in the service of a higher goal.”|
It is disheartening and unfortunate that cancer patients have to be subjected to RCT and similar studies. In a way they are been used as guinea pigs because a lot is still to be learned and discovered about curing and treating cancer. The passage I quoted above is what I thought as I was reading the article. Even though these patients are been subjected to many variables, known and unknown side effects from chemotherapy, and other negative effects from the studies, in a way these motions cannot be prevent. Studies are done on animals but after a while the drug in question has to be tested in humans. In a way patients participating in these studies are trailblazers. They are sacrificing their lives and bodies for a cause that will ultimately help others whether drug companies are money hungry or not. There really is no compensation for a life and good health, monetary or not. However, since patients are available to potentially teach doctors and researchers on treating cancer they almost have no choice but to carry out these trials because the public also looks up to them for guidance and proof that something is been done to combat this illness in some way. Although I do believe no patient should be forced to participate in any trials. Patients will mostly likely have different ways of dealing with their illness and not everyone would want to subject themselves to these experiments. I also hope physician and researchers treat these patients with utmost respect and dignity during these studies. They should also be upfront with patients about details of the study so they know what they are getting themselves into.
|Beside promise of providing drugs to patients are there other incentives provided for patients? |
Though these studies can be very aggressive, however isn’t it inevitable to not test the drugs on humans before making it available for the general population?
|5/23/2013 13:01:30||Mortality Effect was written by S. Lochlann Jain a professor of anthropology in Stanford University. The article was published in Public Culture academic journal of cultural studies in 2010. The author in the introduction discusses an example of a randomized clinical trial for metastatic renal cancer, where patients are asked what would they like to do if they were given the placebo and then later the actual drug was proven to be effective. The author describes how the survival rate of metastatic renal cancer is so low that these patients would not even have the time to try the drug if it were successful. This example sets the authors argument of how randomized control clinical trials in particular those aimed for individuals with metastatic cancers takes advantage of these individuals and their families’ fragile state. The author wishes to discuss not only this fact but also to talk about the cancer culture in general and how different key players are involved: drug companies, physicians, patients, charity foundations, etc. Throughout the article the author does give examples of these key players’ roles in cancer culture. The main topic however, remains the ethnics of clinical trials.||The object of the study is randomized clinical studies aimed for individuals with metastatic cancers. The scale of the study is in general clinical trials in the United States. The article discusses cancer culture in general, and how different people involved with it are affected by it and how they each experience the effects of clinical trials. The author compares different clinical trials and different drugs used in each. There is an example of anthracycline and how although there was not much evidence of its success it was still marketed until one physician did a study which showed that it was not as effective as they thought and was very toxic for the body. Another comparison the author makes is the value of life vs. chemotherapy. Chemotherapy has so many different side effects and does not directly attack the cancer cells but all rapidly diving cells, the author briefly compares the risks of it vs. what is gained—possible prolonging life.||The main argument the author is discussing is the use of humans as guinea pigs for experimental treatments. The author goes on to discuss how the patients used for these invasive and dangerous studies are not only in a physical fragile state but many times also emotionally fragile. By being emotionally fragile the scientist are taking advantage of them by giving them false hope, when there is a very high chance that they will not survive the treatment. The article discusses how the scientists may seem it is ok to use these individuals because their chances of survival are already so low, however, a point the author makes is putting these individuals so such a short amount of time through such harsh treatment is cruel specially when they are not receiving anything for it and will most likely die from it. The article explains who truly receive profit from these trials are the pharmaceutical companies not the patients, and the role of science and medicine is lost, because its goal is no longer to help patients but to capitalize on their disease by using their bodies.||The article is organized through data the author collected on randomized clinical trials, and her opinions on the findings. There are examples of different types of trials but not really any interviews. It was a bit confusing how the author used footnotes in the article, most of her supportive evidence was further explained through the footnotes but it would have been helpful to add it to the actual article. I think it would have also been helpful if the author interviewed other individuals in the field to see what their opinions were. She explains for example how physicians do not see anything wrong in using humans for clinical trials because they saw it as giving them a chance, maybe if she would have interviewed different oncologist and used experts of the interview that argument could have been stronger. The article feels very much of an opinion article or a review where she is summarizing various findings. Some statistics are measured but these are used to show how low the percentage of success for both clinical trials and patients with metastatic cancer is, the low percentage helps the authors argument to show that in reality the cancer research industry is taking advantage of these individuals and making them possibly suffer more at the end of the days, just in order to collect data for their trials.||Response – Page 11 – paragraph 1|
This paragraph discusses antracyclines use for cancer treatment and how it was approved by the FDA without further studies because there was a slight increase in survival rate ~ 4%. This toxic drug was then widely used by oncologist regardless of what the patient cancer stage or type was. The whole clinical trial protocol is very hard to do in a “fair” way because there is always a group that is going to be taken advantage –be the object of the study but at the same time without having a person as an object for scientist to study it would be hard to discover new alternative drug treatments. Animal trials could only prove successful to a certain degree and then to that point it would have to rely on human testing. At the same time I think testing individuals that are metastatic is too controversial because in a way their will power is reduce because they are at the verge of death and anything that might seem to bring them hope they will probably try. Maybe studies should not target this population there are certain populations that in general cannot be targeted for studies such as inmates and the handicap because their will power is compromised.
|Are oncologists crossing the line in offering their terminal patients to enter in clinical trials, shouldn’t the providers goal be to keep their patient at ease as oppose to have them undergo possible treatment that may not prove successful?|
Are metastatic cancer patients as vulnerable and have less of a will power as inmates and the mentally ill, should then be excluded from clinical trails.
|5/23/2013 13:21:19||This piece was written by S. Lochlann Jain, an associate professor of Anthropology at Stanford University, and published in 2010. The piece seems to have been written for those who operate within the medical community, especially those who work with cancer research and patients. It would be a good read for anyone who is considering participating in cancer research as either a patient or a doctor. The introduction promised an analysis that took an alternative look at cancer research and the piece certainly provided that. The texts enemies would certainly be those who advocate for RCT as the most effective cancer treatment.||The piece examines how we approach cancer treatment and what patients look at before they decide to participate in it. This piece is specific to the way that we do things in the United States, and compares us to the rest of the world. The scale is national, but also examines the medical institution as well as personal choices. Though not explicitly stated, I assume the time of the study was the nineties.||The main point of the paper was to force us to examine RCT for cancer treatments, the risks of the treatment compared to the risks of cancer, the fact that cancer treatment has not changed dramatically in the last 50 years, the way that doctors are forced to see patients (like impersonal products that they can make money off of), and the desperation that cancer perpetuates. The argument is explicit and the author does not shy away from making her point known. The argument could easily be challenged by a cancer patient who is critical of how harsh the author is on the medical system.||The author clearly examined studies done by others as well as talking to medical professionals and patients. Her interviews were not cited explicitly. The data was analyzed through cross checking it with those who had undergone cancer treatments. Assumptions that shaped the inquiry included the fact that most people assume that cancer treatments are good and beneficial.||I was very interested in the passage on page 107 that states, “Thus doctors hold the awkward and horrible position of making their living through, that is, in needing, the deaths of their subjects.” Though this is discussed in more detail earlier in the paper, it still comes off as unfairly harsh. Even later in the paper, the author makes it seem as though doctors are only in it for the money and glory. I have to assume that some doctors have good intentions, and wish to help people. I would think that oncology doctors especially would have a special interest in the care of their patients||1) The argument comes off as very one-sided. Why doesn’t the author present possible alternatives to her view?|
2) What alternative methods of studies are available beside RCT?
|5/23/2013 13:25:41||The paper “The Mortality Effect: Counting the Dead in the Cancer Trial” was written by S. Lochlann Jain in 2010 for the peer-reviewed academic journal of cultural studies, Public Culture. The paper was written for those with interest in anthropology and for those with an upper-level education background. S. Lochlann Jain is an associate professor in the Anthropology Department at Stanford University and teaches medical and legal anthropology. Her research focuses on understanding how inevitable injuries of mass productions and consumption are distributed and justified in the United States. The introduction promises to talk about drug testing trials for cancer patients and the morality behind it.||Medical trials for drugs catered towards cancer patients is the study for this paper. The paper focuses on Western population and specifically the United States. The paper does not specify where data was gathered or where the research was being conducted or the time frame of it. But judging by the author's area of focus, it is very likely that she is making a general assumption about cancer medicine trials conducted in the United States. The author mentioned cancer treatments that got famous or popular at certain period of time. The range for the time seems to be since the beginning of cancer drug trials to the present. No comparisons on drug trials in other countries were conducted.||The goal of the paper is to point out that drug trials can be very unethical. The author writes on the point of view of both the patients and the doctors who would administer the trails. The patients who are terminally ill, at a late stage of cancer, would take up the trials to feel like they did everything they could to stay alive till the end, or to feel heroic in giving up their life for the sake of science, in hopes that their sacrifice could produce a cure. The doctors however, see the patients as a commodity to help produce more data on how long a patient can last without any treatment, or the effects of long term exposure to a certain drug, etc. The patients can see itself as a hero, whereas the doctor would see them as nothing more than just a name and check box on the outcomes of a trial.||The data used in the paper were gathered from data used in other research papers. The data were used to support the author's view on treatments of the patients in drug trials. I feel like the data would be better if the author had quoted patients and or conducted research. The use of secondary source versus the use of primary source can make a huge difference. I understand that it is cost inefficient if the author had gone to every state in the United States to interview cancer patients but it would help give weight to the information.||A paragraph on page 98 that really stood out to me was where the author mentioned patients feeling down about the trials: |
The constant reporting of trial results in the news media suggests that they centrally shape Americans’ understandings of risk and causation, even to the extent that people carry the most excruciating self-blame and talk in the most crushed way about being blamed for their cancer, as if it were a result of having drunk too much milk or let their stress go uncontrolled: as if the cancer were their own fault. As one twenty-seven-year-old three-time cancer survivor said to me, “I hate it when people talk like that, it makes me feel bad, and it’s too late for me.”
This section sounds a lot like victim-blaming, where the victim is being blamed for something unfortunate that has happened to them. A clinical trial should not have their patients feeling low. Their mood could affect the data that is being collected. The patients giving up their last hours of their lives for a clinical study should be treated with better care, considering that they could enjoy the rest of their lives on a beach instead of getting tested everyday.
|How will the patient's mood affect the test results on a clinical drug trial?|
Are there rules to regulate drug trials to make sure they are ethical?
|5/23/2013 13:43:56||Mortality Effect was published in 2010 under Public Culture, an interdisciplinary journal on cultural studies put out by Duke University Press. S. Lochlann Jain is a professor of Anthropology at Stanford, and she writes about how medicine interacts with society. The introduction involves the exploration of the “mortality effect” and the paradoxes that intimately accompany cancer treatments.||The paper centers on the randomized control trial as it is used in the treatment of cancer. The scope is at least national, Jain mentions various conferences she attended around the country. Her timeline stretched back all the way to the initial implementation and development of chemotherapeutic drugs, but the body of the paper discusses the last several decades of cancer medicine.||Jain's main argument is that the RCT makes people and patients in a certain way, using ideas of hope and progress, which in turn inform the way we talk about cancer, think about cancer, treat cancer. She cites many other scholars to talk about the development of 'doing' cancer, but her argument is more theoretical and less based on statistics. It still seems well defended, as it goes into detail on how trials shape the way we blame ourselves for cancer, the way we think of it as a war, as the only agent driving success or failure, while it literally relies on the deaths of a great number of subjects. The survival isn't something any one person will experience, it is a collective endeavor that we have become conditioned to accept. Health, for late-stage cancer patients, is a state of being that they have little hope of experiencing, but they help the “collective living-on” effort despite the violence it entails.||The data, as I mentioned before, is less numerical fact and more theoretical and historical analysis. Jain mentions that she quotes from interviews with numerous cancer patients, although her argument draws more on general trends from their interviews. The paper looks at what people say and do, predominantly what they do through the act of research, the RCT. It calls into question the loose practices of RCTs, which frequently group cancer patients under one homogenizing banner, ignoring the fact that there are differentiable cases that might be affected and respond differently to treatment.||I was wondering about Jain's implications when she asks “what is the ethical difference between treatment injury and cancer injury?...What is to be made of the fact that treatments at least as promising as anthracyclines never make it to the Phase III trials that cost so many millions of dollars to run?” (115). I'm very curious as to why things are the way they are, in that Jain doesn't delve very deeply into the logistics of the RCTs. Who funds these trials, who oversees them? Jain might be more interested in the trials' theoretical impacts, but she makes very clear her displeasure with the status quo. The political aspect of this 'guinea-pig' testing seems to me to be one that would draw considerable public outcry if it were reframed.||1. Why do we think of illness as something we are battling against?|
2. How should we redefine violence in light of these kinds of questionable practices?
|5/23/2013 13:44:52||The article "The Mortality Effect: Counting the Dead in the Cancer Trial" by S. Lochlann Jain circulated in the scholarly journal Public Culture in 2010. Medical anthropologists and other educated professionals and scholars interested in a medical anthropological perspective on cancer are the targeted audience of this article.||The article is about cancer culture, particularly about the role of cancer patients in cancer treatment trials, and the "ghosting" that occurs to these patients as they are dehumanized as objects of scientific research. This "ghosting" is what Jain refers to as the "mortality effect" (90).||Jain analyzes the interplay of hope and progress in cancer culture and how this influences cancer patient's roles in clinical trials, whether participation is voluntary or involuntary. There is much manipulation of presentation in trial recruitment pamphlets which use patient's desire to live as an impetus for consent. At the same time, patients are seen as statistics and not as people with lives; as people, they are ghosted. Essentially, the cancer patients become guinea pigs, justified by the sacrifice of service for the greater good in hopes that better ways to treat cancer will be discovered and perfected.||Jain used analysis of trial recruitment pamphlets, interviews, and a gathering of information from other researchers to present this view of cancer culture.||A passage which sums up questions of focus for this article is the following: “The history of using cancer patients as guinea pigs for experimental treatments with radiation and chemical poisons—sometimes with their consent and sometimes not, sometimes leading to efficacious treatments but usually not, often producing enormous wealth for someone else—raises critical questions about the use of dying humans as experimental subjects, as natural resources, and as capitalist health care consumers. These questions cannot be asked if injuries and profits are explained away as side effects of failed but valiant attempts to find a cure" (116-117). |
This passage touches upon the political and economic issues that are a part of cancer culture. Patients are dehumanized in order to further political and economic goals of corporations. It is also difficult to pin-point this manipulation and the health dangers because the adverse (and often fatal) effects of cancer treatment trials are dismissed as "side effects".
|The article mentions a disconnect between doctor and patient accounts of the cancer treatment (103). The doctor is often (usually) privy to information that the patient is not, in regards to cancer treatment trials. This is just another evidence of the "mortality effect" in which the patient is seen as a statistic and not as a human life. What steps can be taken in overcoming this purposeful manipulation/deception of patients, and creating a more transparent cancer culture? How can patients be more informed of what they are undergoing with trials? |
"...Genentech’s representatives cajoled members of the audience not to let their diseases go uncounted, wasted as missed opportunities that could be donated to the higher cause of Genentech’s shareholders" (102). This is evidence of the economic and political interest which sway cancer culture. There is money involved which I think further encourages this "mortality effect", where people are seen as objects of potential profit, and their health is not the primary concern. Yet, patients are encouraged to participate in trials so that results can supposedly be more accurate as the number of participants increases, all under the banner of "service to the future." Is it possible to sidestep these corporate giants who have a big stake in economic gains through cancer treatment? How can the focus be shifted to the welfare of patients as opposed to corporate gains?
|5/23/2013 13:48:37||Jain S. Lochlann is an associate professor at Stanford University. She received her Ph.D in the History of Consciousness at the University of California, Santa Cruz. In her professional career Jain has focused on cancer, and how we come to understand it as something inherent to our daily lives, as well as how things come to be understood as dangerous. In exploring these two themes of her book, Jain published this article, The Mortality Effect, in 2010. This article is written for anthropologists as she does not define every term she refers to in the beginning, she expects us to approach the article with some anthropological knowledge. In this article Jain promises to explore how we have come to normalize death in clinical trials. Ultimately, in the conclusion Jain states that RCT will continue to perpetuate the paradox of cancer and life.||This text is about the paradox's of cancer culture. Jain looks specifically into the presence of random clinical trials as an entity in and of themselves that shape the lives of patients; these trials make life, and let die just as they predict and they prohibit prediction. The process of random clinical trials asks patients to submit their own mortality in the name of preserving life for all, yet it hides this objective in the slim potential that this treatment will work. The focus of these studies is how cancer affects the population of the United States, specifically. This article was written in 2010 and published by Duke University Press so the information is fairly new and relevant. I think the comparison in this article is between the way researchers look at clinical trials and the way patients look at clinical trials. Researchers looks only to collecting data while patients are expecting a life-saving treatment (or hoping for one at the least) and are looking to gain a sense of altruism in helping future generations with their illness. Researchers on the other hand are presented as caring only about the potential this drug has on their career and financial gain. ||The argument in this text is that cancer patients and their caretakers do not dully realize the effects, nor the logic, inherent (and arguably obscured) in random clinical trials. Jain argues that these trials are brutal: it is a war between two sides and people are not event told how to win, it is completely up to chance. I think Jain wants us as readers to question whether this type of treatment is worth the emotional, intellectual, and physical strain that it puts on the patients and caretakers. Should the people involved be more aware of the injustices that they are facing? Should they be made to feel upset that they might not live? That they might get worse or have terrible side affects? Should people be upset that they do not know whether or not they will even be given the chance to live? Jain asks us if hope is enough to conquer these. To the patients and their caretakers, it is hope that allows them to refuse to recognize these injustices and fears.||This text was based on statistics as no interviews were done. Jain researches the history of random clinical trials in medical textbooks, investigative publications, historical analysis and even other forms of communication like the significance of RCT as acted out in the play Wit. Jain's research looks at what people, specifically researchers, do. It looks at the way random clinical trials treat people and how this treatment isn't recognized by patients. It looks into how researchers think about this treatment very differently from how patients look at it. While doctors and researchers are looking only for data, the patients are looking for hope, or a sense of altruism and Jain compares these differences.||"Hope for the individual and progress for science usually justify the intensely dangerous and painful cancer treatments" (96)|
This phrase shocked me because I had never thought about cancer treatments in that way before. It assumes that toxic treatments should be the treatment for a toxic disease (96). While Jain does not directly challenge this treatment as much as she explores it, I believe that I challenge it in my daily life. Growing up with people who suffered from chronic illnesses and cancer I have watched people struggle with medicine that I found ineffective. My family members got worse, suffered serious side effects, were rejected by doctors who thought they should be feeling better than were, and worst of all I witnessed long recovery times for things that I thought should have been faster. In turn I have researched alternative treatments and I believe them to hold great credibility, such as eating better, yoga, acupuncture, picturing positive outcomes etc. For me, this hinges on preventative medicine as well. While cancer is a toxic disease why have we not realized that it is the result of toxins as well? If we instead focus on prohibiting these toxins from entering our bodies, would we not inhibit the toxic disease? Not enough funding has been given to these studies as the largest amounts of money are given to surgeons who focus on the other end of the toxic scale: fighting toxins with more toxins and aggressive surgery. If this is not going to be a priority for professionals in the health care field, I think it is up to individuals to secure this prepare this health, and to adopt the mindset of "no toxins in, no toxins developed, no toxic treatment" and to take their health into their own hands.
|"How can cancer sufferers approach the paradox of clinical trials? Should they purposefully ignore the reality or it a necessity of drug companies to hide the reality of their likely death from them?"|
"Is it possible to promote alternative treatments such as holistic health treatment that engages the mind and the soul of the patients? Even better, what is necessary for a national shift into funding preventative medicine rather than remediation medicine?"
|5/23/2013 13:58:43||This article was written in 2010.by S.Lochlann Jain. It doesn't specifically state where the article was written, but it can be assumed either at Duke University, as the publisher is Duke University Press, or also at various locations like the University of California, San Francisco; the University of Michigan and Harvard University, because the author states these locations in their acknowledgement. The author specifically states that this article is dedicated to the Oxidate Working Group, but it can also be inferred that other intended audiences are college/university students because of the publisher, Duke University Press.||The object of study is patients who have late-stage and meta-static renal cancer, and how they would feel if they participated in a trial where they were given a placebo and the possibility of being treated with TroVax, but also acknowledging that the effect of TroVax in curing cancer is at present very ineffective. There doesn't appear to be a specific location grounded to the study, but more of a general overview of the patients (though there is one mention of a play documenting the death of an English professor from ovarian cancer, that was not an actual case study). There is a comparison made about how the patients are put into two groups: One receiving the standard treatment and the other receiving the new treatment.||The main argument appears to be the decision the cancer patients make on whether or not to proceed with the new trail, even with the likelihood of survival very slim. There is also the argument about how the patients organized into a standard randomized control trail (RCT) are effected by the experimental method, and all the stories patients tell about the difficulty of getting into the trials.||The primary methods used were statistics and patient interviews through the method of the TroVax pamphlet. The article looks at what people say, for example one patient who says "I hate it when people talk like that, it makes me feel bad, and it's too late for me" (Jain, 98). I suppose one core value that could be assumed is that some patients will do anything they can to try and eradicate the cancer, to use any method or treatment necessary to try and become cured, even in the treatment itself (like Chemotherapy) also causes harmful effects to the body such as loss of hair and a weakened, diminished immune system.||One passage that interested me was on page 96 where the article states how hope for the individual and progress for science usually justify the intensely dangerous or painful cancer treatments. I was interested because I wondered how often does the hope of an individual for getting better perhaps conflict with scientific progress? For example if someone is dying from a rare brain disease, while curing the person is hopeful, if the patient died, an autopsy could also provide valuable insight into discovering more about the brain disease.||1) Has the survival rate for metastatic renal cancer increased from less then 5 percent since the publication of this article?|
2) Has there been a growing awareness and/or demand for alternative health treatments that could possibly treat cancer?
|5/23/2013 15:03:30||It was written in 2010 for the Duke University Press. The author is S. Lochlann Jain. It is written for an audience with a high academic background as it is written for a university press as well as audiences from major medical universities like UCSF. The introduction promises to talk about "mortality effects", a sort of ghosting, in cancer culture and the paradoxes that it contains, especially in RCTs. The conclusion he comes up with is that there will be deaths due to politics and the way the science is designed.||It is located all over the country, nationwide. The framework of the study is on randomized control trials from the past.||The main argument is how the use of RCTs, especially on cancer patients, is unethical because of the way the test is designed, having a control group that will most likely all die and having politics have a huge part on how the study goes. Evidence from studies like TroVax are used. It could be challenged through the use of other studies that do the same thing but more humanely. The key concepts used is inefficiencies in the way things are done. They talk about the difference between treatment injury and cancer injury.||This article uses all three. Questions about how RCTs work and the opinions on the direction of these tests were asked in the interviews. It only looks at what the interviewees say and think. Data is inferred, there is no actual physical test done. The assumptions that these tests are all ran about the same way and that death in these RCTs are mainly because of the inefficient way the RCT is held is assumed.||On page 115, Jain discusses the discrepancy in the RCTs due to the infrastructure that holds these RCTs. I think it's really bad that policies require that you have to a control group, but there is no way to prove a drug or a treatment works without doing so. It's a really fine line that they have to deal with.||Why do you think this discussion is being brought up now?|
In what ways can we prevent the deaths in this study without compromising the study objective?
|5/23/2013 16:18:59||This article was published in 2010, so it was probably written in the mid-late 2000’s. The author is S. Lochlann Jain, a professor at Stanford University, so the article was probably written in California. Since the article was published by Duke University, it can be inferred that the intended audience is other scholars and academics of medical anthropology. The introduction promises to explore the “trial format of the experience and culture of cancer.” The conclusion fulfills that promise, as the article details various accounts of cancer experiences. Citations are used as numbered footnotes, and the author’s name is also usually mentioned within sentences.||As mentioned above, this article is about the trial format of the experience and culture of cancer. The location of the study is never explicitly mentioned, however Jain does mentioned her study is drawn from sources in the United States. The scale of the study seems to be national and personal. The time of the study seems to be the mid-late 2000s, as that is the timeframe of most of the sources that Jain cites. There is a comparison of different cancer experiences regarding clinical trials.||The main goal of the writing is to describe the common experiences of people in cancer trials, and perhaps change the way that things are done to improve healthcare. The argument is explicit, as the article is quite detailed with various accounts. The argument is robust, but it could be challenged with additional accounts of various experiences or statistical data. Concepts were not really challenged or invented in this article. The term “health” was usually used in the context of healthcare, and the term “disease” was usually used in the context of certain conditions and how to treat those conditions. A notion of human nature that is brought up is the “self-blame” that Americans carry after receiving their trial results.||Jain used methods of ethnographic, literary, and historical research. She did look at what people did, said, and thought of their cancer trial experiences. People were grouped by their common experiences, as detailed in the sections “Gold Standard”, “Mortality Effect”, and “Treatment Injury.” Values of health and illness were conveyed in a “too” economic/statistical/computerized way that’s impeding the potential effectiveness of healthcare. Perhaps additional accounts of cancer trial experiences would strengthen the text.||p. 108|
I thought the section about “treatment injury” was interesting because it drew the parallels of brutality of both cancer and its treatment, chemotherapy. The theory of “maximum tolerable toxicity” also interested me because I never really made the connection that many chemotherapy drugs come with lifetime maximum doses. The trade-off is that it will also kill healthy cells as part of the “maximum” treatment; it will kill a few, it will injure many, but it will save others.
|What “lessons” from Jain’ study can be taken to improve healthcare?|
Doesn’t there need to be some level of objectivity between chemicals and the treatment of those chemicals on humans?
|5/26/2013 16:23:36||This article is published through Duke University Press in 2010. This is a scholarly publication intended for students within Anthropology and Science and Technology studies. Perhaps even medical students who would directly benefit from this work as they may practice the research trails S. Lochlann Jain is commenting on. The author, S. Lochlann Jain is a professor of Anthropology at Stanford University, who holds interests in study of medicine, law, product design, medical error, and histories of engineering, regulation, corporations, and advertising. The introduction promises to explore the practice and influence of RCTs on medicine and the patient within American healthcare. These promises are satisfied by the conclusion as these intentions are explained through Jain's interpretation of data presented. Citations are used minimally throughout the text.||This article is heavy in interpretation little data is measured for the over all understanding of the actions made within the research chemical trails. The data discovered is less important for the article then the theory gained in its interpretation of meaning. The work is located within American healthcare and the scale can be measured through national practices of RCTs to the individuals making choices affecting their treatment within the system. Institutions are recognized such as healthcare, hospitals, and the media. The time of study is recent and can be applied to today as functions addressed in the article are still taking place currently.||The main argument is presented through the practice of ethics within the healthcare system. The use of RCTs as providing benign evidence, yet being in question of ethics. The article's goal is to have the reader question the practice of RCTs and the use of science in terms of expert knowledge. The hegemony of modern medicine spread through privatization as well as influence over individual action, The argument is robust, yet does not present an alternative. I believe this article would be far stronger if she had explored an alternative. Otherwise the reader is left with an understanding that the current practice of RCTs is not just in regards to ethics, yet has no more else is within the current system. Concepts of economies of hope and progress are explored, along with the centrally of the counter, or the perception of the immortality of said counter in relation to the mortality of the subject is recurrent in the article.||Methods employed are mainly theoretical in interpretation and little interview citations are used. Much of the data is collected through findings medical in origin, such as RCTs results and statistics of how they are practiced. What people say or do is addressed little in this article and what think people is taken into consideration far more. Jains interpretation is constant with few moments of outsiders interpertation. People are grouped as individual patients making choices effecting their treatment to institutions applying their hegemony to what is considered best for all, including private medical firms and their RCTs for new chemicals.||"Anthropologists have further examined the cultural specificity of the trails and then of outsourcing trails in the search for treatment-naive populations. Other focus on the ethnics of the trails and the treatment of subjects, and a burgeoning literature addresses the on-the-ground efficacy of trails in terms of the slippages between theory and practice." - page 95|
This brief passage is striking to me as the role of Anthropologists within any context is to finding meaning and effectually humanizes any situation. Here Jain seems to defend this notion, yet again she shys away from including the opportunity of advocacy for an Anthropologist, as they can become a voice for alternative through their role of cultural explanation.
|What are alternatives to RCTs?|
How can we gain the most scientific knowledge with the least negative impact upon the human condition?
|6/6/2013 6:11:40||The article, “The Mortality Effect: Counting the Dead in the Cancer Trial” was published in 2009 in Public Culture, copyrighted by Duke University Press. This location of circulation identifies the target audience as an academic one, more specifically those interested in culture – and because of the title, obviously – health as related to Cancer. The author of the article, S. Lochlann Jain, is an Associate Professor of Anthropology at Stanford University and obtained her formal training in the History of Consciousness at UC Santa Cruz. She promises in her intro to do an analysis and critique of the randomized control trial (RCT) as related to cancer, and she problematizes the ‘culture of cancer’ that RCTs promote. Her citations are predominantly done in the form of footnotes.||Her object of study for this article is the RCT, and the mentality – hopes, fears, etc – that RCTs promote and/or exploit to achieve their ends in cancer research and experimentation. She locates her study predominantly here in the United States and western medicine, but works through a variety of temporal frameworks as she examines the history of cancer research and the employment of the RCT in order to accomplish it throughout time from its creation as a tool of agriculture to nearly the modern day in the mid 2010s.||The main argument of Jain’s article is to focus in on how cancer treatment and testing through RCTs is packaged and sold to people who are in a vulnerable place, and how this can create and promote a very problematic culture of cancer for both patients who are desperate for a cure, and for the researchers who would turn those patients into subjects for research. She argues that the RCT set-up is analogous to a war or to a sport, but that this is terrible because it isn’t really a place where winning can be had. It merely encourages patients to undergo more and more aggressive treatments, banking on a future which is possible but uncertain due to the fact that treatments are often failures, and in which they aren’t even sure they are actually receiving a treatment or not. She points out that it is disturbing how numbers are generated by doctors simply waiting on patients to die in order to count them, and notes how oftentimes patients seem to be the exploited guineapigs of a science that preys on their hope for health and actively casts them as a natural resource doomed to die of their illness (or even treatment-injury) for the good of future science.||Her data was collected through research of many RCTs, medical journals and texts, some interviews of oncologists and cancer patients as well as therapists who work specifically with cancer patients. She analyzes what people say – from interviews, though this is not always presented as quotes directly in the main text but is often mentioned through footnotes – as well as observing and analyzing the behaviour of patients which speaks for itself (such as selecting more aggressive treatments). People were grouped for her article especially into categories of cancer patient (further broken into placebo group and treatment groups and families) and oncologists. Her core values definitely side with the patient as a human being suffering with dignity and the researchers who use RCTs as possibly ethically questionable but mostly the RCT itself as problematic for both patient and doctor.||One passage I found especially though provoking was when on page 114 Jain discussed treatment-injury and stated, “Because the patients are understood as being in a battle for their lives, in a state of emergency, in some sense already dying – the treatments are always already warranted.” I hadn’t thought of this quite this way before she framed it in the context of redescribing it as a part of treatment-injury and medical violence to a patient. It is true we often think of people who have cancer as ‘dying of cancer’ when in fact they are suffering but still very much alive, and it is definitely true that this mentality probably plays a large role in getting families to convince patients to undergo more aggressive treatments as well as that want coming from patients themselves – the sense of loss and of being afraid to lose someone is a powerful motivator. That RCTs are dangled as bait is terrifying.||Two questions for the class:|
1) Is it possible to shift perspectives around the RCT to allow for clinical testing without casting them in the light of the hopeful panacea for the future that might not even exist?
2) How could we reconfigure the ways RCTs are done in such a way as to enforce more standardization to make them comparable and useful to one another and to the patient so that problems of comparison and dropping of data doesn’t happen?
|6/9/2013 15:58:51||S. Lochlann Jain’s text, The Mortality Effect: Counting the Dead in the Cancer Trial, examines the “morality effect” which she believes to be the way that cancer culture regulates, calculates and understands the effects of cancer. Often when a patient is diagnosed with cancer, they are given a number - a statistic. These statistics, predicting life or death, are based on the lives of other who have died before, due to a similar type of cancer. These “ghosts” or already dead or surviving patients are ignored as past figments of cancer culture, yet they dictate the way that future patients view their own health “statistic.”||Jain’s examination of the “hope concept” was extremely interesting to me. Rather than paint a vivid or truthful portrayal of cancer, mass media attention, which stems from optimistic ignorance, perpetuates a mantra of hope. This mantra doesn’t truly serve to make the patient experience better, but does “pinkify” a movement which has now been actively promoting itself as a “search for the cure.” Homologous and patient experiences and making “cancer events” fun is a strange way for society to deal with what is seen as a “common problem.” Jain writes, “patients and oncologists are invited to live in a space organized through both hope and progress as virtually inescapable, ubiquitous tropes. Venues as distinct as marches for a cure, fund-raisers for children’s camps, and clinical interactions between doctor and patient parry the concept of hope.”||S. Lochlann Jain writes with a personal, almost poetic tone, yet her thesis is not designed to reveal the lives of previously forgotten cancer patients, but rather to examine the framework on which the culture of a cancer exists, how it was constructed and what forces perpetuate future construction. Prognosis’ aren’t solid, aren’t perfect, and instead are based on real people who have individual life experiences. A person can’t truly have a 80% life likelihood, because no one can live a 80% life, they either live of they die. Only absolutes matter in this form of statistic giving, quality of life or death is ignored by numerical value placing. ||On her website a mini blurb about Jain summarizes her current position, as “an Associate Professor in the Anthropology Department at Stanford University, where she teaches medical and legal anthropology,” Jain’s job puts her in contact with peoples, either students becoming influential in the medical or legal field, who may eventually go on to construct their gaze with Jain’s tint. ||Speaking about hope as a trope really pushes the concept that hope isn’t the only way that one can see cancer, as a disease with an inevitable outcome. Cancer is seen as something you have and die from, or something you don’t have and survive, rather than something that everyone has, but some people struggle with more. Or a normal life-state. There are so many ways that cancer can be looked at, but the United States opts to look at cancer as a structure that exists within medicine, community, individuals, and even our yogurt cups contribute to the concept of a “cure.”|
What is your reaction to hearing about someone’s cancer, do you wonder about their eventual health or death?
What do you tell someone who has been newly diagnosed? Do you offer hope?
Have you ever wondered where cancer statistics come from?