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Historical Barrier: �Why such community distrust science & technology�

Group 1�

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COVID- 19

Vaccine Resistance

https://www.healthaffairs.org/do/10.1377/forefront.20220518.275099/

West Oakland

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Ignorance?

Knowledge!

https://www.houstonpress.com/news/giving-dropouts-a-chance-11452859

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EXPERT�

Deficiency model

Model of uni-direction knowledge convey from scientists to ignorant citizens

PUBLIC�

Education

Positive attitude

Ex. Oakland case

?

This attitude of scientists can be explained through a model called a ‘deficiency model’ and this model is still widely accepted by many people even though there are some movements to have bi-directional discourse with the public as time passed. According to this model, people are divided into two groups of experts and the public. And scientific community, so-called experts, tends to think that citizens suffer from a deficit of knowledge and are incapable of grasping the complexity of science. They believe that this ignorance of science is the main reason the citizens are skeptical toward the scientific knowledge. Therefore, scientists believe that the public are in need of education and it will change them into having a positive attitude toward scientific development. After all, as I mentioned earlier, the Oakland case can also be understood as an example corresponding to this deficiency model. But are they really against vaccination because they're ignorant?

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Ignorance

Historical Injustice

Considering Socio-historical background

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Actual cases of Historical Barrier

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Tuskegee syphilis study

https://www.mcgill.ca/oss/article/history/40-years-human-experimentation-america-tuskegee-study

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Tuskegee syphilis study (1932-1973)

40Y

600

African American

Experimentation

Natural state of untreated synphilis

?

Treatment for BAD BLOOD

UNTRUE

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Tuskegee syphilis study (1932-1973)

penicillin

patients

161 deaths

1947

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Tuskegee syphilis study

Scientific racism

Extent of deception and mistreatment

Mistrust of health care

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Genetic biological differences between black & white patient?

Sexual promiscuity and ignorant of personal hygiene?

Highly racist

Very scientific!

The Tuskegee syphilis study is not the only case and there are a few similar instances that show the injustice hidden in the process of scientific development. Scientists not only performed racial experiments, but also they even published papers asserting that "there are genetic biological differences between white and black patients in the case of syphilis infections" or "the more frequent syphilis or gonorrhea in African Americans is due to their sexual promiscuity and ignorant of personal hygiene". This argument is double-blaming that sexually transmitted diseases such as syphilis are not only characteristic of African Americans but also their sexual attitudes and hygiene problems are ethnically determined, which is highly racist. Even though it is apparent that this study is remarkably discriminatory, this argument has been presented and accepted as very scientific at that time. Considering this, it is not a surprise that African Americans have hostility toward medical science.

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drapetomania

https://allthatsinteresting.com/drapetomania

defining African Americans as "patients" who want to escape from such unfair phenomena

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Skeptical attitude toward science

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prescription rate

Black patients

White patients

Opoids

Painkillers

False beliefs, Inaccurate diagnoses

Discriminatory historical events

For instance, in emergency departments, Black patients have been prescribed opioids for acute pain at a lower rate than White patients with matched major symptoms. Difference in prescriptions for chronic pain therapies have also been identified in Veterans Administration and Medicaid payer databases, and several retrospective cohort studies have shown persistent underprescribing of painkillers to Black patients. These prescriptions can lead white medical trainees, reflecting the general population, to have false beliefs about biological differences between Black and White patients, and this racial bias leads to inaccurate pain diagnoses and treatment recommendations. This everyday unfairness reinforces the effect of discriminatory historical events these days and amplifies African Americans’ distrust in medical science.

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What Knowledge truly means?

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New methods and models

Deficiency model

CBPR (community-based participatory research)

https://health.sunnybrook.ca/bone-joint-health/preventive-adaptive-strategies-healthy-hands/

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CBPR (community-based participatory research)

Inclusive research recognizing community as active and equal participants, which responds to the needs of community and its outputs are used in building strengths and resources of the community.

‘Inclusive’

respect

explore

empower

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CBPR (community-based participatory research)

Non-Hispanic black

Chicago breast cancer mortality reduce case

Non-Hispanic white

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CBPR (community-based participatory research)

Chicago breast cancer mortality reduce case

Metropolitan Chicago Breast Cancer task Force

Black women Mortality rate

For an example of community-based research, I’d like to suggest the case of a Chicago-based study that reduced the disparities of breast cancer mortality between non-Hispanic Black and non-Hispanic White women. Despite the development of medicine and a significant decrease in breast cancer mortality, the gap in breast cancer mortality between non-Hispanic black (NHB) and non-Hispanic white (NHW) women has increased paradoxically. A Chicago-based study involved town hall meetings conducted surveys and heard participants’ own experiences about the Chicago breast health system. Using the information collected, they found that inequity was significantly higher than that of New York. To cope with the growing disparity, Chicago has created the Metropolitan Chicago Breast Cancer Task Force, which aims to address inequity, not profit. They tried to resolve inequity by permeating into the community by increasing the accessibility of health care for minority women without simply approaching inequity. Through this, they finally succeed to reduce the mortality rate of black women in Chicago.

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CBPR

Unintended discrimination prevented

Building conversation with community

Finding solutions together

Understand & Compromise

As we’ve seen from the case, community-based participatory research respects the value and personality of the research subject, explores local knowledge, and empowers people to consider themselves as a principal who can investigate their own situations. We believe that CBPR can contribute to solve minorities’ mistrust on science caused by historical/sociological discrimination in two ways. First of all, by CBPR in research of science, unintended discrimination against minorities could be prevented. In this way, we can stop minorities from being distrustful of science due to discrimination in the process of scientific research. By listening to the stories behind their mistrust, building a community for conversation, and trying to find solutions together, minorities and scientists could understand each other’s points and become closer to compromise.

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Extractive research of minorities

CBPR?

https://www.google.com/amp/s/www.bbc.com/news/world-us-canada-58903934.amp

Henrietta Lacks case

Whose cells used for uncountable research around the world without consent

However, community-based research itself is not yet a complete solution, due to the long history of extractive research. Throughout its long history, scientific research has been conducted in the form of exploiting the subjects of experiments, especially the underrepresented people who had been the main subjects of experiments. For instance, Henrietta Lacks, a black woman and also an owner of the renowned HeLa cells, visited Johns Hopkins Hospital only for cancer treatment but her tissue cells were used in studies around the world. Without any notice, over 20 tons of her cells were used in research globally. Her family did not know that her cells were being used for research around the world, and only recently did they know that. Moreover, although they were given money recently, they received far less than the amount used. As shown by the case, scientific research has been exploitative and violent to African-Americans. This history has led black people to think that it is best to refuse to participate in research.

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CBPR?

Structural Discrimination & Exploitation remained

No- Rapport Research

Ex. 20 minutes brief explanation

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Refusals

https://m.driving-tests.org/road-signs/do-not-enter-sign/

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CBPR= just Bandage

Ex. Johns Hopkins cancer research

https://www.google.com/amp/s/nypost.com/2020/06/11/band-aid-launching-racially-diverse-bandages/amp/

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CBPR Evolution

Purpose

Form

Make sense of the historical context of the injustice

Build a rapport

Ensure them to trust scientists

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ART?

https://www.google.com/amp/s/www.nytimes.com/2015/12/20/magazine/a-training-ground-for-untrained-artists.amp.html

place minorities gather to share experiences in paintings

Creative Growth Art Center

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ART?

Share suppressed emotions

Lower psychological barriers

+ SHOULD truly benefit them, SHOULD minimize violence

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Difficulty?

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Difficulties

How to build Rapport?

Can fundraisers wait till then?

How can we encourage researchers?

Consensus needed

The biggest problem is how to build a rapport with African-Americans. While we suggested art as one possible way to build trust with them, it takes a lot of time to overcome historical distrust. In today’s capitalist society where fundraisers of research require research to be done in limited amount of time, it is questionable whether it would be possible to communicate and build relationships with people in the community for a long time for a single study. Thus, the question of how we can encourage researchers to do research in the way we propose in a capitalist society arises. In order to promote it, it is necessary to form a social consensus that research methods should be different from other research because they have complicated historical backgrounds, and how to reach a consensus remains unsolved.

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Breaking the injustice

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Thank you

Hyunsoo Kim

Sumin Kim

Soochang Song

Dahye Jung

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Reference

① Hoffman, K. M., Trawalter, S., Axt, J. R., Oliver, M. N. (2016). Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. Proceedings of the National Academy of Sciences, 113(16), 4296-4301.

② Holkup, P. A., Tripp-Reimer, T., Salois, E. M., Weinert, C. (2004). Community-based Participatory Research. Advances in Nursing Science, 27(3), 162-175.

③ Jackson, F. M. (2002). Considerations for Community-Based Research With African American Women. American Journal of Public Health, 92(4), 561-564.

④ Myers, B. E. (2014). "Drapetomania": Rebellion, Defiance and Free Black Insanity in the Antebellum United States. UCLA Electronic Theses and Dissertations.

⑤ Pouliot, C. (2009). Using the Deficit Model, Public Debate Model and Co-production of Knowledge Models to Interpret Points of View of Students Concerning Citizens' Participation in Socioscientific Issues. International Journal of Environmental and Science Education, 4(1), 49-73.

⑥ Pouliot, C., Godbout, J. (2014). Thinking outside the ‘knowledge deficit’ box. EMBO reports, 15(8), 833-835.

⑦ Scharff, D. P., Mathews, K. J., Jackson, P., Hoffsuemmer, J., Martin, E., Edwards, D. (2010). More than Tuskegee: Understanding Mistrust about Research Participation. Journal of Health Care for the Poor and Underserved, 21(3), 879-897.

⑧ Sighoko, D., Murphy, A. M., Irizarry, B., Rauscher, G., Ferrans, C., Ansell, D. (2017). Changes in the racial disparity in breast cancer mortality in the ten US cities with the largest African American populations from 1999 to 2013: The reduction in breast cancer mortality disparity in Chicago. Cancer Causes & Control, 28(6), 563-568.

⑨ Strand, N. H., Mariano, E. R., Goree, J. H., Narouze, S., Doshi, T. L., Freeman, J. A., Pearson, A. C. S. (2021). Racism in Pain Medicine: We Can and Should Do More. Mayo Clinic Proceedings, 96(6), 1394-1400.