Fair Shares and Sharing Fairly: A Survey of Public Views on Open Science, Informed Consent and Participatory Research in Biobanking

Context Biobanks are important resources which enable large-scale genomic research with human samples and data, raising significant ethical concerns about how participants’ information is managed and shared. Three previous studies of the Canadian public’s opinion about these topics have been conducted. Building on those results, an online survey representing the first study of public perceptions about biobanking spanning all Canadian provinces was conducted. Specifically, this study examined qualitative views about biobank objectives, governance structure, control and ownership of samples and data, benefit sharing, consent practices and data sharing norms, as well as additional questions and ethical concerns expressed by the public. Results Over half the respondents preferred to give a one-time general consent for the future sharing of their samples among researchers. Most expressed willingness for their data to be shared with the international scientific community rather than used by one or more Canadian institutions. Whereas more respondents indicated a preference for one-time general consent than any other model of consent, they constituted less than half of the total responses, revealing a lack of consensus among survey respondents regarding this question. Respondents identified biobank objectives, governance structure and accountability as the most important information to provide participants. Respondents’ concerns about biobanking generally centred around the control and ownership of biological samples and data, especially with respect to potential misuse by insurers, the government and other third parties. Although almost half the respondents suggested that these should be managed by the researchers’ institutions, results indicate that the public is interested in being well-informed about these projects and suggest the importance of increased involvement from participants. In conclusion, the study discusses the viability of several proposed models for informed consent, including e-governance, independent trustees and the use of exclusion clauses, in the context of these new findings about the views of the Canadian public.


Purpose
The purpose of this study is to examine the public's opinion of "open science" in biobanking and genetic databases. These terms refer to a recent research model where human tissue samples, blood samples, DNA and/or personal information are collected, stored and shared extensively between collaborating scientists for research purposes. The legal and ethical implications of this model have not received much focus in policy or in public debate. Therefore, we are interested in your views on consent, confidentiality, and the ownership of products arising from "open science".
We hope this information will help to address concerns about the sharing of biological samples and health information and to inform the development of future studies about research governance.

Eligibility
Our goal is to survey Canadians aged 18 and over who have either provided tissue, blood and/or DNA samples for scientific research, or who would consider doing so in the future.

Risks and Benefits
Because we are collecting information about your opinions, we do not anticipate any physical, psychological or social risks to participants.
Participants will receive compensation in the form of Ipsos' iSay points, which may be redeemed for cash, gift cards or charity donations as described in the "Rewards" section of the Ipsos website.

Procedure and Withdrawal
The following questionnaire will take about 30 minutes to complete. There will be no penalty or loss of compensation if at any time or for any reason you skip one or more questions or withdraw from the study entirely. Your participation in this study is completely voluntary.

Confidentiality
Only the Principal Investigator and two research assistants will have access to survey data. Your identifying information will be kept confidential and separated from your questionnaire answers in order to protect your identity and make your answers anonymous. If you withdraw from the study after the results are anonymized, it will be impossible to remove your questionnaire answers from the others.
All questionnaire information will be destroyed five years after we collect the surveys. The information from your consent form will also be destroyed at that time unless you select on this consent form that you are interested in being recontacted, and you participate in another one of our surveys during that five years. In this case, your identifying information will be destroyed after ten years instead.
No personal information about you will be used in any report produced from this study. Results of this study may be shared in openaccess journals, at academic conferences, to the media, and/or in reports and presentations to our funders, Le Fonds de la recherche du Quebec santé (FRQS).
Research participants will also be given access to aggregated study results at http://www.genomicsandpolicy.org/.

Contact
If at any time you have questions about this study or your rights as a participant, please contact either: If you wish to retain a copy of this form, please print this page now. Thank you for your time and effort.
1. Please provide your name, mailing address, and email address. 3. By clicking "I agree", you indicate that you have read this consent form, that you are above 18 years in age, and that you consent to participate in this study. If you do not wish to participate in this study, please click "I disagree" or simply disregard this study instead.

What is your age?
5. What is your gender? A Survey of Canadians' Views on Open Science in Biobanking A Survey of Canadians' Views on Open Science in Biobanking A Survey of Canadians' Views on Open Science in Biobanking A Survey of Canadians' Views on Open Science in Biobanking 9. How important is it for you to receive clear, specific information about the governance structure of any biobank or genetic database project you participate in (i.e. who will be responsible for managing your information and what safeguards are in place to protect the research participants)?
10. How important is it for you to receive clear, specific information about who will control the samples and data, and who could profit economically from any biobank or genetic database project you participate in? 11. How important is it for you to receive clear, specific information about how your confidentiality will be protected by any biobank or genetic database project you participate in?
12. What is the most important piece of information you would like to be provided about any biobank project that you participate in?
13. What would you prefer concerning tissue samples from your body if they are left over after a medical procedure? n m l k j A Survey of Canadians' Views on Open Science in Biobanking A Survey of Canadians' Views on Open Science in Biobanking A Survey of Canadians' Views on Open Science in Biobanking A Survey of Canadians' Views on Open Science in Biobanking 14. Open sharing of genetic information between researchers and institutions has been shown to substantially facilitate health research. However, some parties are concerned that this could limit patients' rights to choose how, and by whom, their genetic information is used.
Would you be willing to participate in a project where your information and samples would be shared with the international community (without your name or personally identifying information attached), or would you prefer to participate in a project in which your data was only used by a single Canadian institution?
15. Who should benefit financially from largescale biobank research using genetic data and samples?
16. Who should control and take ethical and legal responsibility for the genetic samples and data in a largescale biobank or genetic database project?