Survey of 23andMe customers

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Are you or have you been a customer of 23andMe? We would love to hear what you got out of their test, and what you think about how they use your data. We would be grateful if you would be willing to answer a few questions - this would take about 5-10 minutes and your answers will only be used anonymously for academic research. The research team will not be able to know who you are.

We are a group of university researchers with no connection to 23andMe and are interested in your views purely for research purposes. By participating, you will help us understand how 23andMe customers react to the company’s business strategies.

By filling in the survey you consent to these terms. If you have any questions about our research, please contact either of the research team leaders: Prof. Aviad Raz (Department of Sociology and Anthropology, Ben Gurion University, Beersheva, Israel. email: aviadraz@bgu.ac.il); and Prof. Barbara Prainsack (Department of Global Health & Social Medicine, King's College London, London WC2R 2LS, UK. email: barbara.prainsack@kcl.ac.uk).

Collaborators: Professor Sigrid Sterckx, Department of Philosophy and Moral Sciences, Faculty of Arts and Philosophy, Ghent University, Belgium; Dr Julian Cockbain, Bioethics Institute Ghent, Belgium; Dr Heidi C. Howard, Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden.

1. Please choose the two most important reasons for you to take the 23andMe test (at the time when you decided to take it): *

To learn more about my genetic ancestry

To learn about my risk of disease

To learn about the disease risk of my children or other close relatives

To improve my health

Curiosity

Fun

To help science

To help others

Prefer not to say

Other:

Required

2. What are the most important things that you learned from taking the test? Please choose the two answers that were most important to you *

Information about my ancestry that I did not expect

Information about my ancestry that I did expect

Information about disease risks that I did not expect

Information about disease risks that I did expect

Information related to drug sensitivity that I did not expect

Information related to drug sensitivity that I did expect

General information about the relationship between DNA and disease or traits

Prefer not to say

Other:

Required

3. Was there something particularly positive about your test results that you had not expected?

4. Was there something particularly negative about your test results that you had not expected?

5. When you decided to take the 23andMe test, did you hope that your DNA- and other data would also do something good for society? *

Yes, but it was not an important consideration in deciding to take the test

Yes, and it was an important consideration in deciding to take the test

Prefer not to say

Other:

6. When you took the test, were you aware that 23andMe would keep your DNA (and other personal health/background) data and could use it without asking you? *

Yes, I was aware

I am aware of it now. But when I took the test I was not aware that I agreed to this

No, I was not aware

Yes I was aware, and I opted out

Prefer not to say

Other:

7. 23andMe uses DNA and other data from customers to apply for patents, and to develop drugs and diagnostic tests alone or in partnership with pharmaceutical companies. 23andMe may share your DNA and other data with these and other companies. Were you aware of this when you decided to take the test? *

Yes, I was aware

I am aware of it now. But when I took the test I was not aware that I agreed to this

No, I was not aware

Yes, and I opted out

Prefer not to say

Other:

8. If you had been aware that 23andMe could use DNA- and other data in this way, would you have taken the test?

Yes

Maybe

Prefer not to say

Other:

Clear selection

9. How do you feel about 23andMe using DNA- and other data from customers to apply for patents and develop drugs and diagnostic tests? *

I think it is great (it may advance science and/or lead to new treatments)

I have mixed feelings about it (please expand on this under "other" below)

I do not care

I do not agree to this

Prefer not to say

Other:

Required

10. In which country were you when you ordered the test?

11. Year in which you took the test :

12. Type of enrollment: *

'general' customer

customer enrolled to participate in the company's research initiatives

Other:

13. In terms of its cost, my test was:

Free kit provided by the company

Gift

Reasonably priced

Expensive

Don't remember

Prefer not to say

Other:

Clear selection

14. If 23andMe is going to use your DNA and other data to apply for patents and to develop drugs, do you think they should ask your consent for that: *

Yes, they should ask every time my data is to be used, and give me a detailed description of what it is being used for and why my data is shared with pharmaceutical companies

Just once in the beginning

No, it doesn’t matter to me how many times or for what reasons they use my DNA for research with pharmaceutical companies

Prefer not to say

Other:

15. 23andMe informs their customers that, at any time, they may withdraw consent from having their data used in research. Are you: *

Satisfied with this

Not satisfied with this

Prefer not to say

Other:

16. If, to the last question, you said you are ‘not satisfied with this’, what should be changed?

Participation should be automatic with no opt out available

The option to opt out should be made more clear

The option to opt out should be offered whenever a new research project with the DNA- and/or other data is to be started or whenever a new company joins the project

Customers should be asked to give their consent before their data is used a first time

Customers should be asked to give their consent before their data is used every time

Customers’ data should not be used for research at all

Prefer not to say

Other:

Clear selection

17. Have you personally opted into participating in 23andMe research? *

Yes, and I have never opted out

Yes, but I opted out later

Yes, but I am considering opting out (please explain why under "other" below)

I do not remember

Prefer not to say

Other:

Required

18. Please choose the option that best reflects what you thought you signed up for at the time you became a customer of 23andMe: *

a. To learn more about my genetic ancestry

b. To learn about the relationship between my DNA and my health (in terms of diseases, diet, lifestyle and so on).

c. The above, in addition to granting 23andMe the use of my DNA for research in the future.

d. The above, in addition to being able to consent in the future that research is conducted on my DNA by 23andMe alone or in partnership with pharmaceutical companies.

e. The above, in addition to allowing 23andMe to use my DNA for various R&D purposes even if I did not opt in for DNA research or after I opted out of it.

Other:

My gender: *

Female

Male

Other

Prefer not to say

My age: *

0-17

18-30

30-39

40-49

50-59

60-69

older

prefer not to say

My number of years in formal education: *

0-6

6-12

12-15

15-

Prefer not to say

Thank you!

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