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Protecting groups from genetic research

Bioethics 22 (3):157–165 (2008)

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  1. Do Groups Have Moral Standing in Unregulated mHealth Research?Joon-Ho Yu & Eric Juengst - 2020 - Journal of Law, Medicine and Ethics 48 (S1):122-128.
    Biomedical research using data from participants’ mobile devices borrows heavily from the ethos of the “citizen science” movement, by delegating data collection and transmission to its volunteer subjects. This engagement gives volunteers the opportunity to feel like partners in the research and retain a reassuring sense of control over their participation. These virtues, in turn, give both grass-roots citizen science initiatives and institutionally sponsored mHealth studies appealing features to flag in recruiting participants from the public. But while grass-roots citizen science (...)
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  • Navigating Growth Attenuation in Children with Profound Disabilities.Benjamin S. Wilfond, Paul Steven Miller, Carolyn Korfiatis, Douglas S. Diekema, Denise M. Dudzinski & Sara Goering - 2010 - Hastings Center Report 40 (6):27-40.
    A twenty‐person working group convened to discuss the ethical and policy considerations of the controversial intervention called “growth attenuation,” and if possible to develop practical guidance for health professionals. A consensus proved elusive, but most of the members did reach a compromise.
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  • Navigating Growth Attenuation in Children with Profound Disabilities.Benjamin S. Wilfond, Paul Steven Miller, Carolyn Korfiatis, Douglas S. Diekema, Denise M. Dudzinski, Sara Goering & The Seattle Growth Attenuation and Ethics Working Group - 2010 - Hastings Center Report 40 (6):27-40.
    A twenty‐person working group convened to discuss the ethical and policy considerations of the controversial intervention called “growth attenuation,” and if possible to develop practical guidance for health professionals. A consensus proved elusive, but most of the members did reach a compromise.
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  • Four Faces of Fair Subject Selection.Katherine Witte Saylor & Douglas MacKay - 2020 - American Journal of Bioethics 20 (2):5-19.
    Although the principle of fair subject selection is a widely recognized requirement of ethical clinical research, it often yields conflicting imperatives, thus raising major ethical dilemmas regarding participant selection. In this paper, we diagnose the source of this problem, arguing that the principle of fair subject selection is best understood as a bundle of four distinct sub-principles, each with normative force and each yielding distinct imperatives: (1) fair inclusion; (2) fair burden sharing; (3) fair opportunity; and (4) fair distribution of (...)
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  • Genetic Research and Aboriginal and Torres Strait Islander Australians.Emma Kowal, Glenn Pearson, Chris S. Peacock, Sarra E. Jamieson & Jenefer M. Blackwell - 2012 - Journal of Bioethical Inquiry 9 (4):419-432.
    While human genetic research promises to deliver a range of health benefits to the population, genetic research that takes place in Indigenous communities has proven controversial. Indigenous peoples have raised concerns, including a lack of benefit to their communities, a diversion of attention and resources from non-genetic causes of health disparities and racism in health care, a reinforcement of “victim-blaming” approaches to health inequalities, and possible misuse of blood and tissue samples. Drawing on the international literature, this article reviews the (...)
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  • Are Changes to the Common Rule Necessary to Address Evolving Areas of Research?Diane E. Hoffmann, J. Dennis Fortenberry & Jacques Ravel - 2013 - Journal of Law, Medicine and Ethics 41 (2):454-469.
    The proposed changes to the Common Rule, described in the recent Advanced Notice of Proposed Rulemaking, come more than 20 years after the U.S. Department of Health and Human Services adopted the Rule in 1991. Since that time, human subjects research has changed in significant ways. Not only has the volume of clinical research grown dramatically, this research is now regularly conducted at multiple collaborative sites that are often outside of the United States. Research takes place not only in academic (...)
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  • Secondary uses and the governance of de-identified data: Lessons from the human genome diversity panel.Stephanie M. Fullerton & Sandra S.-J. Lee - 2011 - BMC Medical Ethics 12 (1):16.
    Background: Recent changes to regulatory guidance in the US and Europe have complicated oversight of secondary research by rendering most uses of de-identified data exempt from human subjects oversight. To identify the implications of such guidelines for harms to participants and communities, this paper explores the secondary uses of one de-identified DNA sample collection with limited oversight: the Human Genome Diversity Project (HGDP)-Centre d'Etude du Polymorphisme Humain, Fondation Jean Dausset (CEPH) Human Genome Diversity Panel. Methods: Using a combination of keyword (...)
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  • Ashley Revisited: A Response to the Critics.Douglas S. Diekema & Norman Fost - 2010 - American Journal of Bioethics 10 (1):30-44.
    The case of Ashley X involved a young girl with profound and permanent developmental disability who underwent growth attenuation using high-dose estrogen, a hysterectomy, and surgical removal of her breast buds. Many individuals and groups have been critical of the decisions made by Ashley's parents, physicians, and the hospital ethics committee that supported the decision. While some of the opposition has been grounded in distorted facts and misunderstandings, others have raised important concerns. The purpose of this paper is to provide (...)
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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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  • CQ Sources/Bibliography.Bette Anton - 1999 - Cambridge Quarterly of Healthcare Ethics 8 (4):348-350.
    These CQ Sources were compiled by Bette Anton.
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  • CQ Sources/Bibliography.Bette Anton - 2009 - Cambridge Quarterly of Healthcare Ethics 18 (2):155-158.
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