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

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  • Yann Joly
  • Gratien Dalpé
  • Derek So
  • Stanislav Birko

Abstract

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.

Suggested Citation

  • Yann Joly & Gratien Dalpé & Derek So & Stanislav Birko, 2015. "Fair Shares and Sharing Fairly: A Survey of Public Views on Open Science, Informed Consent and Participatory Research in Biobanking," PLOS ONE, Public Library of Science, vol. 10(7), pages 1-20, July.
  • Handle: RePEc:plo:pone00:0129893
    DOI: 10.1371/journal.pone.0129893
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    References listed on IDEAS

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    1. Krishanu Saha & J. Benjamin Hurlbut, 2011. "Treat donors as partners in biobank research," Nature, Nature, vol. 478(7369), pages 312-313, October.
    2. O'Doherty, Kieran C. & Hawkins, Alice K. & Burgess, Michael M., 2012. "Involving citizens in the ethics of biobank research: Informing institutional policy through structured public deliberation," Social Science & Medicine, Elsevier, vol. 75(9), pages 1604-1611.
    3. Petrini, Carlo, 2010. ""Broad" consent, exceptions to consent and the question of using biological samples for research purposes different from the initial collection purpose," Social Science & Medicine, Elsevier, vol. 70(2), pages 217-220, January.
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    Cited by:

    1. Melanie Goisauf & Gillian Martin & Heidi Beate Bentzen & Isabelle Budin-Ljøsne & Lars Ursin & Anna Durnová & Liis Leitsalu & Katharine Smith & Sara Casati & Marialuisa Lavitrano & Deborah Mascalzoni &, 2019. "Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research," PLOS ONE, Public Library of Science, vol. 14(9), pages 1-22, September.

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