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  1. Amnestic MCI Patients’ Perspectives toward Disclosure of Amyloid PET Results in a Research Context.Gwendolien Vanderschaeghe, Jolien Schaeverbeke, Rik Vandenberghe & Kris Dierickx - 2017 - Neuroethics 10 (2):281-297.
    BackgroundResearchers currently are not obligated to share individual research results with participants. This non-disclosure policy has been challenged on the basis of participants’ rights to be aware and in control of their personal medical information. Here, we determined how patients view disclosure of research PET results of brain amyloid and why they believe it is advantageous or disadvantageous to disclose.MethodAs a part of a larger diagnostic trial, we conducted semi-structured interviews with patients with amnestic Mild Cognitive Impairment. Participants had the (...)
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  • Return of Results: Towards a Lexicon?Bartha Maria Knoppers & Amy Dam - 2011 - Journal of Law, Medicine and Ethics 39 (4):577-582.
    Currently, the return of results in the domain of biobanking constitutes an ethical and legal quagmire, whether it involves population or specific clinical research studies. In light of the fact that population biobanks are often not seen as distinct from those biobanks created for disease research, as well as the uncertainty as to what “return of results” means concretely, this lexicon attempts to demystify the terminology. The terms — results, return, clinical significance, and utility — are discussed. Through an analysis (...)
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  • A Framework for Analyzing the Ethics of Disclosing Genetic Research Findings.Lisa Eckstein, Jeremy R. Garrett & Benjamin E. Berkman - 2014 - Journal of Law, Medicine and Ethics 42 (2):190-207.
    Over the past decade, there has been an extensive debate about whether researchers have an obligation to disclose genetic research findings, including primary and secondary findings. There appears to be an emerging (but disputed) view that researchers have some obligation to disclose some genetic findings to some research participants. The contours of this obligation, however, remain unclear. -/- As this paper will explore, much of this confusion is definitional or conceptual in nature. The extent of a researcher’s obligation to return (...)
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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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  • Risks to Relatives in Genomic Research: A Duty to Warn?Yvonne Bombard, Kenneth Offit & Mark E. Robson - 2012 - American Journal of Bioethics 12 (10):12-14.
    The American Journal of Bioethics, Volume 12, Issue 10, Page 12-14, October 2012.
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