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  1. Collective Fear, Individualized Risk: The Social and Cultural Context of Genetic Testing Forbreast Cancer.N. Press, J. R. Fishman & B. A. Koenig - 2000 - Nursing Ethics 7 (3):237-249.
    The purpose of this article is to provide a critical examination of two aspects of culture and biomedicine that have helped to shape the meaning and practice of genetic testing for breast cancer. These are: the cultural construction of fear of breast cancer, which has been fuelled in part by the predominance of a ‘risk’ paradigm in contemporary biomedicine. The increasing elaboration and delineation of risk factors and risk numbers are in part intended to help women to contend with their (...)
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  • Balancing Autonomy and Responsibility: The Ethics of Generating and Disclosing Genetic Information * Commentary * Author's Reply.N. Hallowell - 2003 - Journal of Medical Ethics 29 (2):74-79.
    Using data obtained during a retrospective interview study of 30 women who had undergone genetic testing—BRCA1/2 mutation searching—this paper describes how women, previously diagnosed with breast/ovarian cancer, perceive their role in generating genetic information about themselves and their families. It observes that when describing their motivations for undergoing DNA testing and their experiences of disclosing genetic information within the family these women provide care based ethical justifications for their actions. Finally, it argues that generating genetic information and disclosing this information (...)
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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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  • Why Not Grant Primacy to the Family?Barbara A. Koenig - 2001 - American Journal of Bioethics 1 (3):33-34.
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  • Personalized Genomic Medicine and the Rhetoric of Empowerment.Eric T. Juengst, Michael A. Flatt & Richard A. Settersten - 2012 - Hastings Center Report 42 (5):34-40.
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  • "They Just Don't Get It!" When Family Disagrees with Expert Opinion.A. Ho - 2009 - Journal of Medical Ethics 35 (8):497-501.
    The notions of “expert” and “expertise” imply that some people have more credibility than others on certain matters. While expert authority is often taken for granted, there are questions as to whether expert power in some cases can be a form of epistemic oppression. Informed by bedside disagreements between family and clinicians as well as feminist discussions of epistemic oppression, this paper argues for a commitment to epistemic humility and the adoption of a two-way collaborative approach between clinicians and families (...)
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  • Balancing Autonomy and Responsibility: The Ethics of Generating and Disclosing Genetic Information.Nina Hallowell, Claire Foster, Ros Eeles, A. Ardern-Jones, Veronica Murday & Maggie Watson - 2003 - Journal of Medical Ethics 29 (2):74-79.
    Using data obtained during a retrospective interview study of 30 women who had undergone genetic testing—BRCA1/2 mutation searching—this paper describes how women, previously diagnosed with breast/ovarian cancer, perceive their role in generating genetic information about themselves and their families. It observes that when describing their motivations for undergoing DNA testing and their experiences of disclosing genetic information within the family these women provide care based ethical justifications for their actions. Finally, it argues that generating genetic information and disclosing this information (...)
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  • ‘Is This Knowledge Mine and Nobody Else's? I Don't Feel That.’ Patient Views About Consent, Confidentiality and Information-Sharing in Genetic Medicine: Table 1.Sandi Dheensa, Angela Fenwick & Anneke Lucassen - 2016 - Journal of Medical Ethics 42 (3):174-179.
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  • Genomic Inheritances: Disclosing Individual Research Results From Whole-Exome Sequencing to Deceased Participants' Relatives.Ben Chan, Flavia M. Facio, Haley Eidem, Sara Chandros Hull, Leslie G. Biesecker & Benjamin E. Berkman - 2012 - American Journal of Bioethics 12 (10):1-8.
    Whole-genome analysis and whole-exome analysis generate many more clinically actionable findings than traditional targeted genetic analysis. These findings may be relevant to research participants themselves as well as for members of their families. Though researchers performing genomic analyses are likely to find medically significant genetic variations for nearly every research participant, what they will find for any given participant is unpredictable. The ubiquity and diversity of these findings complicate questions about disclosing individual genetic test results. We outline an approach for (...)
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  • Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including After Participant Death: Empirical Results From a Cancer Biobank.Carmen Radecki Breitkopf, Gloria M. Petersen, Susan M. Wolf, Kari G. Chaffee, Marguerite E. Robinson, Deborah R. Gordon, Noralane M. Lindor & Barbara A. Koenig - 2015 - Journal of Law, Medicine and Ethics 43 (3):464-475.
    Data are lacking with regard to participants' perspectives on return of genetic research results to relatives, including after the participant's death. This paper reports descriptive results from 3,630 survey respondents: 464 participants in a pancreatic cancer biobank, 1,439 family registry participants, and 1,727 healthy individuals. Our findings indicate that most participants would feel obligated to share their results with blood relatives while alive and would want results to be shared with relatives after their death.
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  • Disclosing Individual Genetic Research Results to Deceased Participants' Relatives by Means of a Qualified Disclosure Policy.Annelien L. Bredenoord & Johannes Jm van Delden - 2012 - American Journal of Bioethics 12 (10):10-12.
    The American Journal of Bioethics, Volume 12, Issue 10, Page 10-12, October 2012.
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  • Informed Decision Making About Predictive DNA Tests: Arguments for More Public Visibility of Personal Deliberations About the Good Life.Marianne Boenink & Simone Burg - 2010 - Medicine, Health Care and Philosophy 13 (2):127-138.
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  • Informed Decision Making About Predictive DNA Tests: Arguments for More Public Visibility of Personal Deliberations About the Good Life. [REVIEW]Marianne Boenink & Simone van der Burg - 2010 - Medicine, Health Care and Philosophy 13 (2):127-138.
    Since its advent, predictive DNA testing has been perceived as a technology that may have considerable impact on the quality of people’s life. The decision whether or not to use this technology is up to the individual client. However, to enable well considered decision making both the negative as well as the positive freedom of the individual should be supported. In this paper, we argue that current professional and public discourse on predictive DNA-testing is lacking when it comes to supporting (...)
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  • Patients' Choices for Return of Exome Sequencing Results to Relatives in the Event of Their Death.Laura M. Amendola, Martha Horike-Pyne, Susan B. Trinidad, Stephanie M. Fullerton, Barbara J. Evans, Wylie Burke & Gail P. Jarvik - 2015 - Journal of Law, Medicine and Ethics 43 (3):476-485.
    The informed consent process for genetic testing does not commonly address preferences regarding disclosure of results in the event of the patient's death. Adults being tested for familial colorectal cancer were asked whether they want their exome sequencing results disclosed to another person in the event of their death prior to receiving the results. Of 78 participants, 92% designated an individual and 8% declined to. Further research will help refine practices for informed consent.
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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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  • Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations.Susan M. Wolf, Frances P. Lawrenz, Charles A. Nelson, Jeffrey P. Kahn, Mildred K. Cho, Ellen Wright Clayton, Joel G. Fletcher, Michael K. Georgieff, Dale Hammerschmidt, Kathy Hudson, Judy Illes, Vivek Kapur, Moira A. Keane, Barbara A. Koenig, Bonnie S. LeRoy, Elizabeth G. McFarland, Jordan Paradise, Lisa S. Parker, Sharon F. Terry, Brian Van Ness & Benjamin S. Wilfond - 2008 - Journal of Law, Medicine and Ethics 36 (2):219-248.
    No consensus yet exists on how to handle incidental fnd-ings in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers (...)
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  • INTRODUCTION: Return of Research Results: What About the Family?Susan M. Wolf - 2015 - Journal of Law, Medicine and Ethics 43 (3):437-439.
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  • Privacy and Disclosure in Medical Genetics Examined in an Ethics of Care.Dorothy C. Wertz & John C. Fletcher - 1991 - Bioethics 5 (3):212–232.
  • The Double Helix: Applying an Ethic of Care to the Duty to Warn Genetic Relatives of Genetic Information.Meaghann Weaver - 2016 - Bioethics 30 (3):181-187.
    Genetic testing reveals information about a patient's health status and predictions about the patient's future wellness, while also potentially disclosing health information relevant to other family members. With the increasing availability and affordability of genetic testing and the integration of genetics into mainstream medicine, the importance of clarifying the scope of confidentiality and the rules regarding disclosure of genetic findings to genetic relatives is prime. The United Nations International Declaration on Human Genetic Data urges an appreciation for principles of equality, (...)
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