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  1. Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences.Deborah R. Gordon, Carmen Radecki Breitkopf, Marguerite Robinson, Wesley O. Petersen, Jason S. Egginton, Kari G. Chaffee, Gloria M. Petersen, Susan M. Wolf & Barbara A. Koenig - 2019 - AJOB Empirical Bioethics 10 (1):1-22.
    Background: Genomic analysis may reveal both primary and secondary findings with direct relevance to the health of probands’ biological relatives. Researchers question their obligations to return findings not only to participants but also to family members. Given the social value of privacy protection, should researchers offer a proband’s results to family members, including after the proband’s death? Methods: Preferences were elicited using interviews and a survey. Respondents included probands from two pancreatic cancer research resources, plus biological and nonbiological family members. (...)
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  • Ethical signposts for clinical geneticists in secondary variant and incidental finding disclosure discussions.Gabrielle M. Christenhusz, Koenraad Devriendt, Hilde Van Esch & Kris Dierickx - 2015 - Medicine, Health Care and Philosophy 18 (3):361-370.
    While ethical and empirical interest in so-called secondary variants and incidental findings in clinical genetics contexts is growing, critical reflection on the ethical foundations of the various recommendations proposed is thus far largely lacking. We examine and critique the ethical justifications of the three most prominent disclosure positions: briefly, the clinical geneticist decides, a joint decision, and the patient decides. Subsequently, instead of immediately developing a new disclosure option, we explore relevant foundational ethical values and norms, drawing on the normative (...)
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  • Taking a Capability Approach to Technology and Its Design: A Philosophical Exploration.E. T. Oosterlaken - unknown
    What people are realistically able to do and be in their lives, their capabilities, are of central moral importance according to the capability approach of Amartya Sen and Martha Nussbaum. Examples are the capabilities to be healthy or to be part of a community. The CA has become an influential normative framework for reflecting on justice, equality, well-being and development. In the past decades it has been successfully applied to areas such as education and health care. Only quite recently have (...)
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