11 found
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  1.  64
    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.  19
    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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  3.  49
    Wrestling with Social and Behavioral Genomics: Risks, Potential Benefits, and Ethical Responsibility.Michelle N. Meyer, Paul S. Appelbaum, Daniel J. Benjamin, Shawneequa L. Callier, Nathaniel Comfort, Dalton Conley, Jeremy Freese, Nanibaa' A. Garrison, Evelynn M. Hammonds, K. Paige Harden, Sandra Soo-Jin Lee, Alicia R. Martin, Daphne Oluwaseun Martschenko, Benjamin M. Neale, Rohan H. C. Palmer, James Tabery, Eric Turkheimer, Patrick Turley & Erik Parens - 2023 - Hastings Center Report 53 (S1):2-49.
    In this consensus report by a diverse group of academics who conduct and/or are concerned about social and behavioral genomics (SBG) research, the authors recount the often‐ugly history of scientific attempts to understand the genetic contributions to human behaviors and social outcomes. They then describe what the current science—including genomewide association studies and polygenic indexes—can and cannot tell us, as well as its risks and potential benefits. They conclude with a discussion of responsible behavior in the context of SBG research. (...)
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  4.  74
    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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  5.  26
    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.
    Through the use of culturally appropriate videos on precision medicine research (PMR) that were developed and tailored to five racial and ethnic groups of patients, and subsequent focus-group discu...
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  6.  35
    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.
    In Bester’s article (2018) challenging the use of the harm principle and advocating sole reliance on the use of a best interest standard (BIS) in pediatric decision-making, we believe that the auth...
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  7.  90
    An Ethical Framework for Research Using Genetic Ancestry.Anna C. F. Lewis, Santiago J. Molina, Paul S. Appelbaum, Bege Dauda, Agustin Fuentes, Stephanie M. Fullerton, Nanibaa' A. Garrison, Nayanika Ghosh, Robert C. Green, Evelynn M. Hammonds, Janina M. Jeff, David S. Jones, Eimear E. Kenny, Peter Kraft, Madelyn Mauro, Anil P. S. Ori, Aaron Panofsky, Mashaal Sohail, Benjamin M. Neale & Danielle S. Allen - 2023 - Perspectives in Biology and Medicine 66 (2):225-248.
    ABSTRACT:A wide range of research uses patterns of genetic variation to infer genetic similarity between individuals, typically referred to as genetic ancestry. This research includes inference of human demographic history, understanding the genetic architecture of traits, and predicting disease risk. Researchers are not just structuring an intellectual inquiry when using genetic ancestry, they are also creating analytical frameworks with broader societal ramifications. This essay presents an ethics framework in the spirit of virtue ethics for these researchers: rather than focus on (...)
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  8.  34
    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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  9.  34
    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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  10.  16
    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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  11.  16
    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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