10 found
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  1.  18
    Genomic Contextualism: Shifting the Rhetoric of Genetic Exceptionalism.John A. Lynch, Aaron J. Goldenberg, Kyle B. Brothers & Nanibaa' A. Garrison - 2019 - American Journal of Bioethics 19 (1):51-63.
    As genomic science has evolved, so have policy and practice debates about how to describe and evaluate the ways in which genomic information is treated for individuals, institutions, and society. The term genetic exceptionalism, describing the concept that genetic information is special or unique, and specifically different from other kinds of medical information, has been utilized widely, but often counterproductively in these debates. We offer genomic contextualism as a new term to frame the characteristics of genomic science in the debates. (...)
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  2.  36
    Introduction: Sharing Data in a Medical Information Commons.Amy L. McGuire, Mary A. Majumder, Angela G. Villanueva, Jessica Bardill, Juli M. Bollinger, Eric Boerwinkle, Tania Bubela, Patricia A. Deverka, Barbara J. Evans, Nanibaa' A. Garrison, David Glazer, Melissa M. Goldstein, Henry T. Greely, Scott D. Kahn, Bartha M. Knoppers, Barbara A. Koenig, J. Mark Lambright, John E. Mattison, Christopher O'Donnell, Arti K. Rai, Laura L. Rodriguez, Tania Simoncelli, Sharon F. Terry, Adrian M. Thorogood, Michael S. Watson, John T. Wilbanks & Robert Cook-Deegan - 2019 - Journal of Law, Medicine and Ethics 47 (1):12-20.
    Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.
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  3.  9
    Trust, Precision Medicine Research, and Equitable Participation of Underserved Populations.Maya Sabatello, Shawneequa Callier, Nanibaa' A. Garrison & Elizabeth G. Cohn - 2018 - American Journal of Bioethics 18 (4):34-36.
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  4.  14
    Agreed: The Harm Principle Cannot Replace the Best Interest Standard … but the Best Interest Standard Cannot Replace The Harm Principle Either.D. Micah Hester, Kellie R. Lang, Nanibaa' A. Garrison & Douglas S. Diekema - 2018 - American Journal of Bioethics 18 (8):38-40.
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  5.  16
    New Words and Old Stories: Indigenous Teachings in Health Care and Bioethics.Jessica Bardill & Nanibaa' A. Garrison - 2016 - American Journal of Bioethics 16 (5):50-52.
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  6.  9
    Family Ties: The Use of DNA Offender Databases to Catch Offenders' Kin.Henry T. Greely, Daniel P. Riordan, Nanibaa' A. Garrison & Joanna L. Mountain - 2006 - Journal of Law, Medicine and Ethics 34 (2):248-262.
    “The sins of the fathers are to be laid upon the children.”Just after midnight on March 21, 2003, a drunk stood on a footbridge over a motorway in a village in Surrey in southern England. After eight pints of beer, he was drunk enough to decide to drop a brick from the overpass into traffic to see if he could hit something; unfortunately, he was not so drunk that he missed. The brick crashed through the windshield on the driver's side (...)
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  7.  16
    Family Ties: The Use of DNA Offender Databases to Catch Offenders' Kin.Henry T. Greely, Daniel P. Riordan, Nanibaa' A. Garrison & Joanna L. Mountain - 2006 - Journal of Law, Medicine and Ethics 34 (2):248-262.
    The authors examine the scientific possibility and the legal and ethical implications of using DNA forensic technology, through partial matches to DNA from crime scenes, to turn into suspects the relatives of people whose DNA profiles are in forensic databases.
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  8.  2
    Naming Indigenous Concerns, Framing Considerations for Stored Biospecimens.Jessica Bardill & Nanibaa' A. Garrison - 2015 - American Journal of Bioethics 15 (9):73-75.
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  9.  6
    Considerations for Returning Research Results to Culturally Diverse Participants and Families of Decedents.Nanibaa' A. Garrison - 2015 - Journal of Law, Medicine and Ethics 43 (3):569-575.
    There has been considerable debate on which genomic research results to return to participants and when those results should be returned, but little attention to how those results should be returned, especially to minority and culturally diverse participants. This paper explores the cultural and ethical considerations around returning research results to participants and families of culturally diverse backgrounds, with a special focus on considerations when the research participant is deceased, and raises points for further discussion.
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  10. Genomic Justice for Native Americans: Impact of the Havasupai Case on Genetic Research.Nanibaa' A. Garrison - 2013 - Science, Technology, and Human Values 38 (2):201-223.
    In 2004, the Havasupai Tribe filed a lawsuit against the Arizona Board of Regents and Arizona State University researchers upon discovering their DNA samples, initially collected for genetic studies on type 2 diabetes, had been used in several other genetic studies. The lawsuit reached a settlement in April 2010 that included monetary compensation and return of DNA samples to the Havasupai but left no legal precedent for researchers. Through semistructured interviews, institutional review board chairs and human genetics researchers at US (...)
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