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Genes, cells, and biobanks: Yes, there’s still a consent problem

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  • Timothy Caulfield
  • Blake Murdoch

Abstract

From a research perspective, the interest in biobanking continues to intensify. Governments and industry have invested heavily in biobanks, as exemplified by initiatives like the United Kingdom Biobank and United States' Precision Medicine Initiative. But despite this enthusiasm, many profound legal and ethical challenges remain unresolved. Indeed, there continues to be disagreements about how best to obtain consent and the degree and nature of control that research participants retain over donated samples and health information. Emerging social trends—including concerns about commercialization and perceived rights of continuing control (“biorights”)—seem likely to intensify these issues.

Suggested Citation

  • Timothy Caulfield & Blake Murdoch, 2017. "Genes, cells, and biobanks: Yes, there’s still a consent problem," PLOS Biology, Public Library of Science, vol. 15(7), pages 1-9, July.
    • Handle: RePEc:plo:pbio00:2002654
    DOI: 10.1371/journal.pbio.2002654
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    References listed on IDEAS

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    1. Murphy, J. & Scott, J. & Kaufman, D. & Geller, G. & LeRoy, L. & Hudson, K., 2009. "Public perspectives on informed consent for biobanking," American Journal of Public Health, American Public Health Association, vol. 99(12), pages 2128-2134.
    2. Sara Reardon, 2017. "Controversial patient-consent proposal left out of research-ethics reforms," Nature, Nature, vol. 541(7638), pages 449-449, January.
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    Cited by:

    1. Nadine R. Caron & Wilf Adam & Kate Anderson & Brooke T. Boswell & Meck Chongo & Viktor Deineko & Alexanne Dick & Shannon E. Hall & Jessica T. Hatcher & Patricia Howard & Megan Hunt & Kevin Linn & Ashl, 2023. "Partnering with First Nations in Northern British Columbia Canada to Reduce Inequity in Access to Genomic Research," IJERPH, MDPI, vol. 20(10), pages 1-31, May.
    2. 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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