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  1. Return of Results in Population Studies: How Do Participants Perceive Them?Hélène Nobile, Pascal Borry, Jennifer Moldenhauer & Manuela M. Bergmann - 2021 - Public Health Ethics 14 (1):12-22.
    As a cornerstone of public health, epidemiology has lately undergone substantial changes enabled by, among other factors, the use of biobank infrastructures. In biobank-related research, the return of results to participants constitutes an important and complex ethical question. In this study, we qualitatively investigated how individuals perceive the results returned following their participation in cohort studies with biobanks. In our semi-structured interviews with 31 participants of two such German studies, we observed that some participants overestimate the nature of the personal (...)
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  • Defining categories of actionability for secondary findings in next-generation sequencing.Celine Moret, Alex Mauron, Siv Fokstuen, Periklis Makrythanasis & Samia A. Hurst - 2017 - Journal of Medical Ethics 43 (5):346-349.
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  • Return of Research Results: General Principles and International Perspectives.Emmanuelle Lévesque, Yann Joly & Jacques Simard - 2011 - Journal of Law, Medicine and Ethics 39 (4):583-592.
    Five years ago, an article co-written by two of us (Joly and Simard) presented an emerging trend to disclose certain individual genetic results to research participants. Since then, both technologies and research practices have evolved significantly. Given this rapid evolution, our goal is to provide updated and thorough guidance on this issue. Our paper begins by identifying the ethical principles that support the return of results: justice, beneficence, and respect for persons. Then, it presents the results of an analysis of (...)
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  • Return of Research Results: General Principles and International Perspectives.Emmanuelle Lévesque, Yann Joly & Jacques Simard - 2011 - Journal of Law, Medicine and Ethics 39 (4):583-592.
    Five years ago, an article co-written by some of us presented an emerging trend to disclose some individual genetic results to research participants within the international research community. At the time, ethical norms and scholarly publications on the return of results often did not distinguish between the return of research results in general and the return of unexpected results. Both technologies and research practices have evolved significantly. Today whole genome and exome sequencing are increasingly affordable and frequently used in genetic (...)
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  • An Egalitarian Perspective on Information Sharing: The Example of Health Care Priorities.Jenny Lindberg, Linus Broström & Mats Johansson - forthcoming - Health Care Analysis:1-15.
    In health care, the provision of pertinent information to patients is not just a moral imperative but also a legal obligation, often articulated through the lens of obtaining informed consent. Codes of medical ethics and many national laws mandate the disclosure of basic information about diagnosis, prognosis, and treatment alternatives. However, within publicly funded health care systems, other kinds of information might also be important to patients, such as insights into the health care priorities that underlie treatment offers made. While (...)
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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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  • Clinically Significant? Depends on Whom You Ask.Liza-Marie Johnson, Christopher L. Church, Michael F. Walsh & Justin N. Baker - 2012 - American Journal of Bioethics 12 (10):18-20.
    The American Journal of Bioethics, Volume 12, Issue 10, Page 18-20, October 2012.
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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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  • 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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  • Disclosing Results to Genomic Research Participants: Differences That Matter.Alessandro Blasimme, Alexandra Soulier, Sophie Julia, Samantha Leonard & Anne Cambon-Thomsen - 2012 - American Journal of Bioethics 12 (10):20-22.
    The American Journal of Bioethics, Volume 12, Issue 10, Page 20-22, October 2012.
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