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  1. Recognizing the Right Not to Know: Conceptual, Professional, and Legal Implications.Graeme Laurie - 2014 - Journal of Law, Medicine and Ethics 42 (1):53-63.
    This article argues for the importance of conceptual clarity in the debate about the so-called right not to know. This is vital both at the theoretical and the practical level. It is suggested that, unlike many formulations and attempts to give effect to this right, what is at stake is not merely an aspect of personal autonomy and therefore cannot and should not be reduced only to a question of individual choice. Rather, it is argued that the core interests that (...)
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  • Recognizing the Right Not to Know: Conceptual, Professional, and Legal Implications.Graeme Laurie - 2014 - Journal of Law, Medicine and Ethics 42 (1):53-63.
    The right not to know is a contested matter. This can be because the inversion of the normal framing of entitlement to information about one's own health is thought to be illogical and inconsistent with self-authorship and/or because the very idea of claiming a right not to know information is an inappropriate appeal to the discourse of rights that places impossible responsibilities on others. Notwithstanding, there has been a sustained increase in this kind of appeal in recent years fueled in (...)
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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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  • Biobanks and the Return of Research Results: Out with the Old and In with the New?Ma'N. H. Zawati & Amélie Rioux - 2011 - Journal of Law, Medicine and Ethics 39 (4):614-620.
    This article examines the complex and contemporary issue of the return of research results in biobanks. After suggesting the exclusion of some adjacent issues usually flanking the debate, this article reviews the current practices of biobanks on the disclosure of research results to participants. It then focuses more specifically on the debate in the literature before turning to a review of the typology of recent reforms being put forward.
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  • Biobanks and the Return of Research Results: Out with the Old and in with the New?Ma'N. H. Zawati & Amélie Rioux - 2011 - Journal of Law, Medicine and Ethics 39 (4):614-620.
    In 2009, Time magazine named “biobanks” as one of the 10 ideas changing the world. These organized collections of human biological material and associated data have been identified as “vital research tools in the drive to uncover the consequences of human health and disease.” Since their inception, however, biobanks have faced ethical and legal challenges. Whether these pertain to informed consent, access by researchers, commercialization, confidentiality, or governance, biobanks must continue to address jurisdictional matters, operational difficulties, and normative frameworks that (...)
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  • Examining the Use of Consent Forms to Promote Dissemination of Research Results to Participants.Dorothyann Curran, Mike Kekewich & Thomas Foreman - 2018 - Research Ethics 15 (1):1-28.
    It is becoming widely recognized that dissemination of research results to participants is an important action for the conclusion of a research study. Most research institutions have standardized consent documents or templates that they require their researchers to use. Consent forms are an ideal place to indicate that results of research will be provided to participants, and the practice of inserting statements to this effect is becoming more conventional. In order to determine the acceptance of this practice across Canada we (...)
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  • Improving Dissemination of Study Results: Perspectives of Individuals with Cystic Fibrosis.Emily Christofides, Karla Stroud, Diana Elizabeth Tullis & Kieran C. O’Doherty - 2019 - Research Ethics 15 (3-4):1-14.
    The practice of communicating research findings to participants has been identified as important in the research ethics literature, but little research has examined empirically how this occurs and...
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  • The Search for Clarity in Communicating Research Results to Study Participants.D. I. Shalowitz & F. G. Miller - 2008 - Journal of Medical Ethics 34 (9):e17-e17.
    Current guidelines on investigators' responsibilities to communicate research results to study participants may differ on whether investigators should proactively re-contact participants, the type of results to be offered, the need for clinical relevance before disclosure, and the stage of research at which results should be offered. Lack of consistency on these issues, however, does not undermine investigators' obligation to offer to disclose research results: an obligation rooted firmly in the principle of respect for research participants.
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  • Individual Genetic and Genomic Research Results and the Tradition of Informed Consent: Exploring US Review Board Guidance.Christian Simon, Laura A. Shinkunas, Debra Brandt & Janet K. Williams - 2012 - Journal of Medical Ethics 38 (7):417-422.
    Background Genomic research is challenging the tradition of informed consent. Genomic researchers in the USA, Canada and parts of Europe are encouraged to use informed consent to address the prospect of disclosing individual research results (IRRs) to study participants. In the USA, no national policy exists to direct this use of informed consent, and it is unclear how local institutional review boards (IRBs) may want researchers to respond. Objective and methods To explore publicly accessible IRB websites for guidance in this (...)
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  • Ethical Issues Related to Computerised Family Medical Histories in Sickle Cell Disease: Inforare.S. Franrenet, N. Duchange, F. Galacteros, C. Quantin, O. Cohen, R. Nzouakou, S. Sudraud, C. Herve & G. Moutel - 2010 - Journal of Medical Ethics 36 (10):604-607.
    The Inforare project aims to set up a system for the sharing of clinical and familial data, in order to study how genes are related to the severity of sickle cell disease. While the computerisation of clinical records represents a valuable research goal, an ethical framework is necessary to guarantee patients' protection and their rights in this developing field. Issues relating to patient information during the Inforare study were analysed by the steering committee. Several major concerns were discussed by the (...)
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  • Researchers' Preferences and Attitudes on Ethical Aspects of Genomics Research: A Comparative Study Between the USA and Spain.M. Ruiz-Canela, J. I. Valle-Mansilla & D. P. Sulmasy - 2009 - Journal of Medical Ethics 35 (4):251-257.
    Introduction: The use of human samples in genomic research has increased ethical debate about informed consent (IC) requirements and the information that subjects should receive regarding the results of the research. However, there are no quantitative data regarding researchers’ attitudes about these issues. Methods: We present the results of a survey of 104 US and 100 Spanish researchers who had published genomic epidemiology studies in 61 journals during 2006. Results: Researchers preferred a broader IC than the IC they had actually (...)
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  • 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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  • First Do No Harm: Ethical Concerns of Health Researchers That Discourage the Sharing of Results With Research Participants.Rachel S. Purvis, Christopher R. Long, Leah R. Eisenberg, D. Micah Hester, Thomas V. Cunningham, Angel Holland, Harish E. Chatrathi & Pearl A. McElfish - 2020 - Ajob Empirical Bioethics 11 (2):104-113.
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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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  • Qualitative Study of Participants' Perceptions and Preferences Regarding Research Dissemination.Rachel S. Purvis, Traci H. Abraham, Christopher R. Long, M. Kathryn Stewart, T. Scott Warmack & Pearl Anna McElfish - 2017 - Ajob Empirical Bioethics 8 (2):69-74.
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  • Genomic Contextualism: Shifting the Rhetoric of Genetic Exceptionalism.John A. Lynch, Aaron J. Goldenberg, Kyle B. Brothers & Nanibaa' A. Garrison - 2019 - American Journal of Bioethics 19 (1):51-63.
    As genomic science has evolved, so have policy and practice debates about how to describe and evaluate the ways in which genomic information is treated for individuals, institutions, and society. The term genetic exceptionalism, describing the concept that genetic information is special or unique, and specifically different from other kinds of medical information, has been utilized widely, but often counterproductively in these debates. We offer genomic contextualism as a new term to frame the characteristics of genomic science in the debates. (...)
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  • ‚Mirroring‘ the Ethics of Biobanking: What Analysis of Consent Documents Can Tell Us?Serepkaite Jurate, Valuckiene Zivile & Gefenas Eugenijus - 2014 - Science and Engineering Ethics 20 (4):1-15.
    Biobanks have been recognized as a key research infrastructure and how to approach ethical questions has been a topic of discussion for at least a decade by now. This article explores the characteristics of donors’ participation in European biobanks as reflected in the consent documents of a selection of different biobanks from various European countries. The primary aim of this study is to understand how donors are informed about their participation in biobanking. Also the paper discusses what the most important (...)
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  • Health Research Participants' Preferences for Receiving Research Results.C. R. Long, M. K. Stewart, T. V. Cunningham, T. S. Warmack & P. A. McElfish - 2016 - Clinical Trials 13:1-10.
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  • Utilizing Focus Groups with Potential Participants and Their Parents: An Approach to Inform Study Design in a Large Clinical Trial.Sandeep Kadimpati, Jennifer B. McCormick, Yichen Chiu, Ashley B. Parker, Aliya Z. Iftikhar, Randall P. Flick & David O. Warner - 2014 - Ajob Empirical Bioethics 5 (3):31-38.
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  • Do Researchers Have an Obligation to Actively Look for Genetic Incidental Findings?Catherine Gliwa & Benjamin E. Berkman - 2013 - American Journal of Bioethics 13 (2):32-42.
    The rapid growth of next-generation genetic sequencing has prompted debate about the responsibilities of researchers toward genetic incidental findings. Assuming there is a duty to disclose significant incidental findings, might there be an obligation for researchers to actively look for these findings? We present an ethical framework for analyzing whether there is a positive duty to look for genetic incidental findings. Using the ancillary care framework as a guide, we identify three main criteria that must be present to give rise (...)
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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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  • 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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  • Children's Perspectives on the Benefits and Burdens of Research Participation.Claudia Barned, Jennifer Dobson, Alain Stintzi, David Mack & Kieran C. O'Doherty - 2018 - Ajob Empirical Bioethics 9 (1):19-28.
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