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  1. Attitudes of Physicians and Patients Towards Disclosure of Genetic Information to Spouse and First-Degree Relatives: A Case Study From Turkey.Aslihan Akpinar & Nermin Ersoy - 2014 - BMC Medical Ethics 15 (1):39.
    When considering the principle of medical confidentiality, disclosure of genetic information constitutes a special case because of the impact that this information can have on the health and the lives of relatives. The aim of this study is to explore the attitudes of Turkish physicians and patients about sharing information obtained from genetic tests.
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  • Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.Susan M. Wolf, Rebecca Branum, Barbara A. Koenig, Gloria M. Petersen, Susan A. Berry, Laura M. Beskow, Mary B. Daly, Conrad V. Fernandez, Robert C. Green, Bonnie S. LeRoy, Noralane M. Lindor, P. Pearl O'Rourke, Carmen Radecki Breitkopf, Mark A. Rothstein, Brian Van Ness & Benjamin S. Wilfond - 2015 - Journal of Law, Medicine and Ethics 43 (3):440-463.
    Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death.
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  • International Policies on Sharing Genomic Research Results with Relatives: Approaches to Balancing Privacy with Access.Rebecca Branum & Susan M. Wolf - 2015 - Journal of Law, Medicine and Ethics 43 (3):576-593.
    Returning genetic research results to relatives raises complex issues. In order to inform the U.S. debate, this paper analyzes international law and policies governing the sharing of genetic research results with relatives and identifies key themes and lessons. The laws and policies from other countries demonstrate a range of approaches to balancing individual privacy and autonomy with family access for health benefit, offering important lessons for further development of approaches in the United States.
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  • Return of Results in Participant-Driven Research: Learning From Transformative Research Models.Susan M. Wolf - 2020 - Journal of Law, Medicine and Ethics 48 (S1):159-166.
    Participant-driven research is a burgeoning domain of research innovation, often facilitated by mobile technologies. Return of results and data are common hallmarks, grounded in transparency and data democracy. PDR has much to teach traditional research about these practices and successful engagement. Recommendations calling for new state laws governing research with mHealth modalities common in PDR and federal creation of review mechanisms, threaten to stifle valuable participant-driven innovation, including in return of results.
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  • Comments Confirm That Student Health Surveillance Needs Ethics Guidelines to Act on Risk-Cluster Findings.Arnold H. Levinson, M. Franci Crepeau-Hobson, Jacqueline Glover, Marilyn E. Coors, Daniel S. Goldberg & Matthew K. Wynia - 2020 - American Journal of Bioethics 20 (10):W4-W7.
    Volume 20, Issue 10, October 2020, Page W4-W7.
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  • Duties When an Anonymous Student Health Survey Finds a Hot Spot of Suicidality.Arnold H. Levinson, M. Franci Crepeau-Hobson, Marilyn E. Coors, Jacqueline J. Glover, Daniel S. Goldberg & Matthew K. Wynia - 2020 - American Journal of Bioethics 20 (10):50-60.
    Public health agencies regularly survey randomly selected anonymous students to track drug use, sexual activities, and other risk behaviors. Students are unidentifiable, but a recent project that i...
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  • The Emergence of Clinical Research Ethics Consultation: Insights From a National Collaborative.Kathryn M. Porter, Marion Danis, Holly A. Taylor, Mildred K. Cho & Benjamin S. Wilfond - 2018 - American Journal of Bioethics 18 (1):39-45.
    The increasing complexity of human subjects research and its oversight has prompted researchers, as well as institutional review boards, to have a forum in which to discuss challenging or novel ethical issues not fully addressed by regulations. Research ethics consultation services provide such a forum. In this article, we rely on the experiences of a national Research Ethics Consultation Collaborative that collected more than 350 research ethics consultations in a repository and published 18 challenging cases with accompanying ethical commentaries to (...)
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  • Assessing Duty to Warn in Donated Embryos.Megan Allyse & Laura Rust - 2018 - American Journal of Bioethics 18 (7):75-76.
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  • Research Recruitment of Adult Survivors of Neonatal Infections: Is There a Role for Parental Consent?Ann J. Melvin, Kathleen M. Mohan, Anna Wald, Kathryn Porter & Benjamin S. Wilfond - 2015 - American Journal of Bioethics 15 (10):58-59.
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