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  1. Becoming partners, retaining autonomy: ethical considerations on the development of precision medicine.Alessandro Blasimme & Effy Vayena - 2016 - BMC Medical Ethics 17 (1):67.
    Precision medicine promises to develop diagnoses and treatments that take individual variability into account. According to most specialists, turning this promise into reality will require adapting the established framework of clinical research ethics, and paying more attention to participants’ attitudes towards sharing genotypic, phenotypic, lifestyle data and health records, and ultimately to their desire to be engaged as active partners in medical research.Notions such as participation, engagement and partnership have been introduced in bioethics debates concerning genetics and large-scale biobanking to (...)
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  • Managing Incidental Findings: Lessons From Neuroimaging.Emily Borgelt, James A. Anderson & Judy Illes - 2013 - American Journal of Bioethics 13 (2):46-47.
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  • (2 other versions)Incidental findings of uncertain significance: To know or not to know - that is not the question.Bjørn Hofmann - 2016 - BMC Medical Ethics 17 (1):1-9.
    BackgroundAlthough the “right not to know” is well established in international regulations, it has been heavily debated. Ubiquitous results from extended exome and genome analysis have challenged the right not to know. American College of Medical Genetics and Genomics Recommendations urge to inform about incidental findings that pretend to be accurate and actionable. However, ample clinical cases raise the question whether these criteria are met. Many incidental findings are of uncertain significance. The eager to feedback information appears to enter the (...)
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  • Response to Open Peer Commentaries on “Do Researchers Have an Obligation to Actively Look for Genetic Incidental Findings?”.Catherine Gliwa & Benjamin E. Berkman - 2013 - American Journal of Bioethics 13 (5):W10-W11.
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  • The Nirvana Fallacy and the Return of Results.Leslie G. Biesecker - 2013 - American Journal of Bioethics 13 (2):43-44.
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  • A Perspective From Clinical Providers and Patients: Researchers’ Duty to Actively Look for Genetic Incidental Findings.Kathryn M. Ross & Marian Reiff - 2013 - American Journal of Bioethics 13 (2):56-58.
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  • The Duty to Rescue in Genomic Research.Michael Ulrich - 2013 - American Journal of Bioethics 13 (2):50-51.
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  • Incomplete Knowledge of the Clinical Context as a Barrier to Interpreting Incidental Genetic Research Findings.Gregory Costain & Anne S. Bassett - 2013 - American Journal of Bioethics 13 (2):58-60.
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  • Harms of Deception in FMR1 Premutation Genotype-Driven Recruitment.Sam Doernberg & Sara Chandros Hull - 2017 - American Journal of Bioethics 17 (4):62-63.
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  • The Right to Know: A Revised Standard for Reporting Incidental Findings.G. Owen Schaefer & Julian Savulescu - 2018 - Hastings Center Report 48 (2):22-32.
    The “best-medical-interests” standard for reporting findings does not go far enough. Research subjects have a right to know about any comprehensible piece of information about them that is generated by research in which they are participating. An even broader standard may sometimes be appropriate: if subjects agree to accept information that they may not understand, then all information may be disclosed.
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  • Incorporating Research Burden and Utility Considerations as Limiting Factors in a Framework for Returning IRR.Chloe Connor & Benjamin E. Berkman - 2024 - American Journal of Bioethics 24 (2):96-98.
    The authors of the Target article, Shen and colleagues (2024) argue that there is a need for an ethical framework to help analyze when it is appropriate to return individualized research results (I...
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  • Lay attitudes toward trust, uncertainty, and the return of pediatric research results in biobanking.John Lynch, Janelle Hines, Sarah Theodore & Monica Mitchell - 2016 - AJOB Empirical Bioethics 7 (3):160-166.
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  • Reframing the Ethical Debate Regarding Incidental Findings in Genetic Research.Jeremy R. Garrett - 2013 - American Journal of Bioethics 13 (2):44-46.
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  • Why genomics researchers are sometimes morally required to hunt for secondary findings.Julian J. Koplin, Julian Savulescu & Danya F. Vears - 2020 - BMC Medical Ethics 21 (1):1-11.
    Genomic research can reveal ‘unsolicited’ or ‘incidental’ findings that are of potential health or reproductive significance to participants. It is widely thought that researchers have a moral obligation, grounded in the duty of easy rescue, to return certain kinds of unsolicited findings to research participants. It is less widely thought that researchers have a moral obligation to actively look for health-related findings. This paper examines whether there is a moral obligation, grounded in the duty of easy rescue, to actively hunt (...)
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  • Understanding variations in secondary findings reporting practices across U.S. genome sequencing laboratories.Sara L. Ackerman & Barbara A. Koenig - 2018 - AJOB Empirical Bioethics 9 (1):48-57.
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  • Models of Consent to Return of Incidental Findings in Genomic Research.Paul S. Appelbaum, Erik Parens, Cameron R. Waldman, Robert Klitzman, Abby Fyer, Josue Martinez, W. Nicholson Price & Wendy K. Chung - 2014 - Hastings Center Report 44 (4):22-32.
    Genomic research—including whole genome sequencing and whole exome sequencing—has a growing presence in contemporary biomedical investigation. The capacity of sequencing techniques to generate results that go beyond the primary aims of the research—historically referred to as “incidental findings”—has generated considerable discussion as to how this information should be handled—that is, whether incidental results should be returned, and if so, which ones.Federal regulations governing most human subjects research in the United States require the disclosure of “the procedures to be followed” in (...)
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  • Legal Implications of an Ethical Duty to Search for Genetic Incidental Findings.W. Nicholson Price - 2013 - American Journal of Bioethics 13 (2):48-49.
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  • Ancillary Care, Genomics, and the Need and Opportunity for Community-Based Participatory Research.Kaija Zusevics - 2013 - American Journal of Bioethics 13 (2):54-56.
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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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  • Incidental Findings in the Era of Whole Genome Sequencing?Erik Parens, Paul Appelbaum & Wendy Chung - 2013 - Hastings Center Report 43 (4):16-19.
    The rise of technologies that can inexpensively sequence entire genomes means that researchers and clinicians have access to ever vaster stores of genomic data, some of which could be of great use to research participants or patients, and most of which, at least for today, will be of little, uncertain, or no use. Those facts are essential features of a new ethical territory we are now entering with genetics research. As we explore that territory, we should try to be as (...)
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  • Genomic Incidental Findings: Reducing the Burden to Be Fair.Velizara Anastasova, Alessandro Blasimme, Sophie Julia & Anne Cambon-Thomsen - 2013 - American Journal of Bioethics 13 (2):52-54.
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