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Public perspectives on informed consent for biobanking

Author

Listed:
  • Murphy, J.
  • Scott, J.
  • Kaufman, D.
  • Geller, G.
  • LeRoy, L.
  • Hudson, K.

Abstract

The National Institutes of Health and other federal health agencies are considering establishing a national biobank to study the roles of genes and environment in health. We assessed the public's attitudes toward the proposed biobank, including preferences for providing informed consent. Sixteen focus groups were conducted, and themes arising from the focus groups were tested in a large, representative survey (n=4659) of the general population. Our research demonstrates that when considering participating in a genomic biobank, individuals want ongoing choices and control over access to their samples and information.

Suggested Citation

  • 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.
    • Handle: RePEc:aph:ajpbhl:10.2105/ajph.2008.157099_6
    DOI: 10.2105/AJPH.2008.157099
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    Cited by:

    1. Jonas Lander & Tobias Hainz & Irene Hirschberg & Daniel Strech, 2014. "Current Practice of Public Involvement Activities in Biomedical Research and Innovation: A Systematic Qualitative Review," PLOS ONE, Public Library of Science, vol. 9(12), pages 1-17, December.
    2. 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.
    3. Rothwell, Erin & Anderson, Rebecca & Goldenberg, Aaron & Lewis, Michelle H. & Stark, Louisa & Burbank, Matthew & Wong, Bob & Botkin, Jeffrey R., 2012. "Assessing public attitudes on the retention and use of residual newborn screening blood samples: A focus group study," Social Science & Medicine, Elsevier, vol. 74(8), pages 1305-1309.
    4. Sandra Millon Underwood & Aaron G. Buseh & Sheryl T. Kelber & Patricia E. Stevens & Leolia Townsend, 2013. "Enhancing the Participation of African Americans in Health-Related Genetic Research: Findings of a Collaborative Academic and Community-Based Research Study," Nursing Research and Practice, Hindawi, vol. 2013, pages 1-9, December.
    5. 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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