John M. Conley, Robert Mitchell, R. Jean Cadigan, Arlene M. Davis, Allison W. Dobson & Ryan Q. Gladden
Journal of Law, Medicine and Ethics 40 (3):612-629 (2012)
Abstract |
The current ethical norms of genomic biobanking creating and maintaining large repositories of human DNA and/or associated data for biomedical research have generated criticism from every angle, at both the practical and theoretical levels. The traditional research model has involved investigators seeking biospecimens for specific purposes that they can describe and disclose to prospective subjects, from whom they can then seek informed consent. In the case of many biobanks, however, the institution that collects and maintains the biospecimens may not itself be directly involved in research, instead banking the biospecimens and associated data for other researchers. Moreover, the future uses of biospecimens may be unknown, if not unknowable, at the time of collection. Biobanking may thus stretch the meanings of inform and consent to their breaking point: if you cannot inform subjects about what their biospecimens will be used for, what can they consent to? Given that informed consent by individual subjects is the ethical gold standard, the seeming dilution of the concept in the context of biobanking is a profound problem.
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DOI | 10.1111/j.1748-720x.2012.00694.x |
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References found in this work BETA
DNA Databanks and Consent: A Suggested Policy Option Involving an Authorization Model. [REVIEW]Timothy Caulfield, Ross Upshur & Abdallah Daar - 2003 - BMC Medical Ethics 4 (1):1-4.
Expanding the Ethical Analysis of Biobanks.Mark A. Rothstein - 2005 - Journal of Law, Medicine and Ethics 33 (1):89-101.
Expanding the Ethical Analysis of Biobanks.Mark A. Rothstein - 2005 - Journal of Law, Medicine and Ethics 33 (1):89-101.
The Consent Problem Within DNA Biobanks.Darren Shickle - 2006 - Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 37 (3):503-519.
View all 9 references / Add more references
Citations of this work BETA
Qualitative Study on Custodianship of Human Biological Material and Data Stored in Biobanks.Michiel Verlinden, Herman Nys, Nadine Ectors & Isabelle Huys - 2016 - BMC Medical Ethics 17 (1):1-10.
Biobank Economics and the “Commercialization Problem”.Andrew Turner, Clara Dallaire-Fortier & Madeleine J. Murtagh - 2013 - Spontaneous Generations 7 (1):69-80.
Access, Entanglement, and Prosociality.Robert Mitchell - 2013 - American Journal of Bioethics 13 (6):49-51.
Legitimacy, Trust and Stakeholder Engagement: Biobanking in South Africa.Keymanthri Moodley - 2017 - Asian Bioethics Review 9 (4):325-334.
Automatic Placement of Genomic Research Results in Medical Records: Do Researchers Have a Duty? Should Participants Have a Choice?Anya E. R. Prince, John M. Conley, Arlene M. Davis, Gabriel Lázaro-Muñoz & R. Jean Cadigan - 2015 - Journal of Law, Medicine and Ethics 43 (4):827-842.
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