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  1. Exploring Understanding of “Understanding”: The Paradigm Case of Biobank Consent Comprehension.Laura M. Beskow & Kevin P. Weinfurt - 2019 - American Journal of Bioethics 19 (5):6-18.
    Data documenting poor understanding among research participants and real-time efforts to assess comprehension in large-scale studies are focusing new attention on informed consent comprehension. Within the context of biobanking consent, we previously convened a multidisciplinary panel to reach consensus about what information must be understood for a prospective participant’s consent to be considered valid. Subsequently, we presented them with data from another study showing that many U.S. adults would fail to comprehend the information the panel had deemed essential. When asked (...)
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  • Broadening consent--and diluting ethics?B. Hofmann - 2009 - Journal of Medical Ethics 35 (2):125-129.
    Biobank research is potentially fruitful. It is argued that broad consent is acceptable for future research on biological material because a) the benefit is high, b) it pays respect to people’s autonomy, c) it is consistent with current practices and d) because the risk is low. Furthermore, broad consent should be allowed if information is handled safely, people can withdraw and expanded research should be approved by an ethics review board. However, these arguments are flawed and the criteria for broad (...)
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  • Misunderstanding in Clinical Research: Distinguishing Therapeutic Misconception, Therapeutic Misestimation, & Therapeutic Optimism.Sam Horng & Christine Grady - 2003 - IRB: Ethics & Human Research 25 (1):11.
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  • Public expectations for return of results from large-cohort genetic research.Juli Murphy, Joan Scott, David Kaufman, Gail Geller, Lisa LeRoy & Kathy Hudson - 2008 - American Journal of Bioethics 8 (11):36 – 43.
    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 human health. A preliminary public engagement study was conducted to assess public attitudes and concerns about the proposed biobank, including the expectations for return of individual research results. A total of 141 adults of different ages, incomes, genders, ethnicities, and races participated in 16 focus groups in six locations across the country. Focus group participants voiced (...)
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  • Moving From Understanding of Consent Conditions to Heuristics of Trust.Michael M. Burgess & Kieran C. O’Doherty - 2019 - American Journal of Bioethics 19 (5):24-26.
    Volume 19, Issue 5, May 2019, Page 24-26.
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  • Return of Results: Towards a Lexicon?Bartha Maria Knoppers & Amy Dam - 2011 - Journal of Law, Medicine and Ethics 39 (4):577-582.
    The last few years have witnessed the growth of large-scale, population genomics biobanks, which serve as longitudinal, gene-environment databases for future yet unspecified research. An international consortium, the Public Population Project in Genomics, builds harmonization tools for such biobanks and has catalogued numerous studies — at least 139 with over 10,000 banked participants and 34 with over 100,000. As their potential use for translational, clinical research draws near, it is opportune to clarify the duties of such biobanks to communicate results (...)
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  • Being Polite: Why Biobank Consent Comprehension Is Neither a Requirement nor an Aspiration.Berge Solberg & Lars Ursin - 2019 - American Journal of Bioethics 19 (5):31-33.
    Volume 19, Issue 5, May 2019, Page 31-33.
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  • Reciprocity and the Quest for Meaningful Disclosure.Ma’N. H. Zawati & Bartha Maria Knoppers - 2019 - American Journal of Bioethics 19 (5):36-38.
    Volume 19, Issue 5, May 2019, Page 36-38.
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  • Measuring Understanding and Respecting Trust in Biobank Consent.T. J. Kasperbauer & Peter H. Schwartz - 2019 - American Journal of Bioethics 19 (5):29-31.
    Beskow and Weinfurt (2019) present an excellent and timely discussion of how to respond to evidence that individuals do not fully understand a biobank consent form. We faced similar challenges afte...
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