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Robert Cook-Deegan [14]Robert M. Cook-Deegan [2]Robert Mullan Cook-Deegan [1]
  1.  41
    Broad Consent for Research With Biological Samples: Workshop Conclusions.Christine Grady, Lisa Eckstein, Ben Berkman, Dan Brock, Robert Cook-Deegan, Stephanie M. Fullerton, Hank Greely, Mats G. Hansson, Sara Hull, Scott Kim, Bernie Lo, Rebecca Pentz, Laura Rodriguez, Carol Weil, Benjamin S. Wilfond & David Wendler - 2015 - American Journal of Bioethics 15 (9):34-42.
    Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the (...)
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  2.  19
    What is a Medical Information Commons?Juli M. Bollinger, Peter D. Zuk, Mary A. Majumder, Erika Versalovic, Angela G. Villanueva, Rebecca L. Hsu, Amy L. McGuire & Robert Cook-Deegan - 2019 - Journal of Law, Medicine and Ethics 47 (1):41-50.
    A 2011 National Academies of Sciences report called for an “Information Commons” and a “Knowledge Network” to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.
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  3.  6
    Characterizing the Biomedical Data-Sharing Landscape.Angela G. Villanueva, Robert Cook-Deegan, Barbara A. Koenig, Patricia A. Deverka, Erika Versalovic, Amy L. McGuire & Mary A. Majumder - 2019 - Journal of Law, Medicine and Ethics 47 (1):21-30.
    Advances in technologies and biomedical informatics have expanded capacity to generate and share biomedical data. With a lens on genomic data, we present a typology characterizing the data-sharing landscape in biomedical research to advance understanding of the key stakeholders and existing data-sharing practices. The typology highlights the diversity of data-sharing efforts and facilitators and reveals how novel data-sharing efforts are challenging existing norms regarding the role of individuals whom the data describe.
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  4.  6
    Genomic Data-Sharing Practices.Angela G. Villanueva, Robert Cook-Deegan, Jill O. Robinson, Amy L. McGuire & Mary A. Majumder - 2019 - Journal of Law, Medicine and Ethics 47 (1):31-40.
    Making data broadly accessible is essential to creating a medical information commons. Transparency about data-sharing practices can cultivate trust among prospective and existing MIC participants. We present an analysis of 34 initiatives sharing DNA-derived data based on public information. We describe data-sharing practices captured, including practices related to consent, privacy and security, data access, oversight, and participant engagement. Our results reveal that data-sharing initiatives have some distance to go in achieving transparency.
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  5.  27
    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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  6.  22
    Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons.Patricia A. Deverka, Dierdre Gilmore, Jennifer Richmond, Zachary Smith, Rikki Mangrum, Barbara A. Koenig, Robert Cook-Deegan, Angela G. Villanueva, Mary A. Majumder & Amy L. McGuire - 2019 - Journal of Law, Medicine and Ethics 47 (1):70-87.
    A medical information commons is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust.
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  7.  2
    BRCA1/2 Variant Data-Sharing Practices.Juli M. Bollinger, Abhi Sanka, Lena Dolman, Rachel G. Liao & Robert Cook-Deegan - 2019 - Journal of Law, Medicine and Ethics 47 (1):88-96.
    Accessing BRCA1/2 data facilitates the detection of disease-associated variants, which is critical to informing clinical management of risks. BRCA1/2 data sharing is complex and many practices exist. We describe current BRCA1/2 data-sharing practices, in the United States and globally, and discuss obstacles and incentives to sharing, based on 28 interviews with personnel at U.S. and non-U.S. clinical laboratories and databases. Our examination of the BRCA1/2 data-sharing landscape demonstrates strong support for and robust sharing of BRCA1/2 data around the world, increasing (...)
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  8.  15
    CRISPR Patents: Aspiring to Coherent Patent Policy.Robert Cook-Deegan - 2018 - American Journal of Bioethics 18 (12):51-54.
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  9.  17
    LeRoy Walters’s Legacy of Bioethics in Genetics and Biotechnology Policy.Robert Cook-Deegan & Stephen J. McCormack - 2019 - Kennedy Institute of Ethics Journal 29 (1):51-66.
    LeRoy Walters was a central figure in debates about federal policy regarding genetics and biotechnology—a neutral, publicly engaged philosopher and religious studies academic who put his skills to work in national service. His career spanned the emergence of biotechnology as a field in the 1970s until his retirement. His interests reached from moral philosophical theory to Holocaust studies to practical concerns about public policy in genetics. We focus here on the role of bioethics in policy related to the advent of (...)
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  10.  8
    Patents and Genome-Wide DNA Sequence Analysis: Is It Safe to Go Into the Human Genome?Robert Cook-Deegan & Subhashini Chandrasekharan - 2014 - Journal of Law, Medicine and Ethics 42 (s1):42-50.
  11.  10
    The Bermuda Triangle: The Pragmatics, Policies, and Principles for Data Sharing in the History of the Human Genome Project.Robert Cook-Deegan, Rachel Ankeny & Kathryn Maxson Jones - 2018 - Journal of the History of Biology 51 (4):693-805.
    The Bermuda Principles for DNA sequence data sharing are an enduring legacy of the Human Genome Project. They were adopted by the HGP at a strategy meeting in Bermuda in February of 1996 and implemented in formal policies by early 1998, mandating daily release of HGP-funded DNA sequences into the public domain. The idea of daily sharing, we argue, emanated directly from strategies for large, goal-directed molecular biology projects first tested within the “community” of C. elegans researchers, and were introduced (...)
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  12.  10
    What's the Use? Disparate Purposes of U.S. Federal Bioethics Commissions.Jenny Dyck Brian & Robert Cook-Deegan - 2017 - Hastings Center Report 47 (S1):S14-S16.
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  13.  24
    Alzheimer Testing at Silver Years.A. Mathew Thomas, Gene Cohen, Robert M. Cook-Deegan, Joan O'sullivan, Stephen G. Post, Allen D. Roses, Kenneth F. Schaffner & Ronald M. Green - 1998 - Cambridge Quarterly of Healthcare Ethics 7 (3):294-307.
    Early last year, the GenEthics Consortium (GEC) of the Washington Metropolitan Area convened at George Washington University to consider a complex case about genetic testing for Alzheimer disease (AD). The GEC consists of scientists, bioethicists, lawyers, genetic counselors, and consumers from a variety of institutions and affiliations. Four of the 8 co-authors of this paper delivered presentations on the case. Supplemented by additional ethical and legal observations, these presentations form the basis for the following discussion.
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  14.  4
    The Bermuda Triangle: The Pragmatics, Policies, and Principles for Data Sharing in the History of the Human Genome Project.Kathryn Maxson Jones, Rachel A. Ankeny & Robert Cook-Deegan - 2018 - Journal of the History of Biology 51 (4):693-805.
    The Bermuda Principles for DNA sequence data sharing are an enduring legacy of the Human Genome Project. They were adopted by the HGP at a strategy meeting in Bermuda in February of 1996 and implemented in formal policies by early 1998, mandating daily release of HGP-funded DNA sequences into the public domain. The idea of daily sharing, we argue, emanated directly from strategies for large, goal-directed molecular biology projects first tested within the “community” of C. elegans researchers, and were introduced (...)
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  15.  25
    Commentary on “Distinguishing Genetic From Nongenetic Medical Tests: Some Implications for Antidiscrimination Legislation” (J. S. Alper and J. Beckwith). [REVIEW]Robert Mullan Cook-Deegan - 1998 - Science and Engineering Ethics 4 (2):151-154.
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  16.  5
    Conflicts Between Commercial and Scientific Roles in Academic Health Research.Neetika Prabhakar Cox, Christopher Heaney & Robert M. Cook-Deegan - 2010 - In Thomas H. Murray & Josephine Johnston (eds.), Trust and Integrity in Biomedical Research: The Case of Financial Conflicts of Interest. Johns Hopkins University Press.
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