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  1. Response to Open Peer Commentaries on “Disclosing Individual Genetic Results to Research Participants”: Defining Clinical Utility And Revisiting the Role of Relationships.Vardit Ravitsky & Benjamin S. Wilfond - 2006 - American Journal of Bioethics 6 (6):W10-W12.
    Investigators and institutional review boards should integrate plans about the appropriate disclosure of individual genetic results when designing research studies. The ethical principles of beneficence, respect, reciprocity, and justice provide justification for routinely offering certain results to research participants. We propose a result-evaluation approach that assesses the expected information and the context of the study in order to decide whether results should be offered. According to this approach, the analytic validity and the clinical utility of a specific result determine whether (...)
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  • Letting the Gene out of the bottle: A comment on returning individual research results to participants.Pilar N. Ossorio - 2006 - American Journal of Bioethics 6 (6):24 – 25.
  • 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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  • What does 'respect for persons' require? Attitudes and reported practices of genetics researchers in informing research participants about research.F. A. Miller, R. Z. Hayeems, L. Li & J. P. Bytautas - 2012 - Journal of Medical Ethics 38 (1):48-52.
    Background It has been suggested that researchers are obliged to offer summary findings to research participants to demonstrate respect for persons, and that this may increase public trust in, and awareness of, the research enterprise. Yet little research explores researchers' attitudes and practices regarding the range of initiatives that might serve these ends. Methods Results of an international survey of 785 eligible authors of genetics research studies in autism or cystic fibrosis are reported. Results Of 343 researchers who completed the (...)
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  • Seeking Context for the Duty to Rescue: Contractualism and Trust in Research Institutions.Karen M. Meagher - 2015 - American Journal of Bioethics 15 (2):18-20.
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  • Disclosure of individual research results in clinico-genomic trials: challenges, classification and criteria for decision-making.Regine Kollek & Imme Petersen - 2011 - Journal of Medical Ethics 37 (5):271-275.
    While an ethical obligation to report findings of clinical research to trial participants is increasingly recognised, the academic debate is often vague about what kinds of data should be fed back and how such a process should be organised. In this article, we present a classification of different actors, processes and data involved in the feedback of research results pertaining to an individual. In a second step, we reflect on circumstances requiring further ethical consideration. In regard to a concrete research (...)
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  • Relationships with test-tubes: Where's the reciprocity?Kelly Fryer-Edwards & Stephanie M. Fullerton - 2006 - American Journal of Bioethics 6 (6):36 – 38.
  • When research seems like clinical care: a qualitative study of the communication of individual cancer genetic research results.Fiona A. Miller, Mita Giacomini, Catherine Ahern, Jason S. Robert & Sonya de Laat - 2008 - BMC Medical Ethics 9 (1):4.
    Research ethicists have recently declared a new ethical imperative: that researchers should communicate the results of research to participants. For some analysts, the obligation is restricted to the communication of the general findings or conclusions of the study. However, other analysts extend the obligation to the disclosure of individual research results, especially where these results are perceived to have clinical relevance. Several scholars have advanced cogent critiques of the putative obligation to disclose individual research results. They question whether ethical goals (...)
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  • Duty to disclose what? Querying the putative obligation to return research results to participants.F. A. Miller, R. Christensen, M. Giacomini & J. S. Robert - 2008 - Journal of Medical Ethics 34 (3):210-213.
    Many research ethics guidelines now oblige researchers to offer research participants the results of research in which they participated. This practice is intended to uphold respect for persons and ensure that participants are not treated as mere means to an end. Yet some scholars have begun to question a generalised duty to disclose research results, highlighting the potential harms arising from disclosure and questioning the ethical justification for a duty to disclose, especially with respect to individual results. In support of (...)
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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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  • Considering the nature of individual research results.Laura M. Beskow - 2006 - American Journal of Bioethics 6 (6):38 – 40.