David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Ezio Di Nucci
Jonathan Jenkins Ichikawa
Jack Alan Reynolds
Learn more about PhilPapers
The bioethics and legal commmunity are divided over whether investigators who conduct biomedical research are ethically and/or legally obligated to disclose incidental genetic findings to research participants. This paper argues that the justification for disclosure rests on the mistaken view that principles of beneficence, respect, reciprocity, and/or justice require researchers to offer participants individual genetic results. Whereas these principles and others obligate physicians to share individually relevant results with patients with whom they share a fiduciary relationship in the clinical care setting, they do not similarly obligate investigators to share such information with participants in the research setting. Furthermore, proposals to disclose incidenal findings that are non-life threatening conflate the aims of clinical research with those of clinical care. Consequently, participants may suffer from a therapeutic or diagnostic misconception, researchers may be inclined to overstate the benefits of enrollment, and institutional review boards (IRBs) may face unforeseen difficulties in assessing trial risks and benefits.
|Keywords||No keywords specified (fix it)|
|Categories||categorize this paper)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library||
References found in this work BETA
No references found.
Citations of this work BETA
No citations found.
Similar books and articles
Helen M. Sharp & Robert D. Orr (2004). When "Minimal Risk" Research Yields Clinically-Significant Data, Maybe the Risks Aren't So Minimal. American Journal of Bioethics 4 (2):32-36.
Emmanuelle Lévesque, Yann Joly & Jacques Simard (2011). Return of Research Results: General Principles and International Perspectives. Journal of Law, Medicine & Ethics 39 (4):583-592.
David Wendler & Christine Grady (2008). What Should Research Participants Understand to Understand They Are Participants in Research? Bioethics 22 (4):203–208.
Vardit Ravitsky & Benjamin Wilfond (2006). Response to Open Peer Commentaries on “Disclosing Individual Genetic Results to Research Participants”: Defining Clinical Utility And Revisiting the Role of Relationships. American Journal of Bioethics 6 (6):W10-W12.
Teri A. Manolio (2006). Taking Our Obligations to Research Participants Seriously: Disclosing Individual Results of Genetic Research. American Journal of Bioethics 6 (6):32 – 34.
John Appiah-Poku, Sam Newton & Nancy Kass (2011). Participants' Perceptions of Research Benefits in an African Genetic Epidemiology Study. Developing World Bioethics 11 (3):128-135.
Conrad Vincent Fernandez, Shaureen Taweel, Eric D. Kodish & Charles Weijer, Disclosure of Research Result to Research Participants: Needs and Attitudes of Adolescents and Parents.
Lee Black & Kelly A. McClellan (2011). Familial Communication of Research Results: A Need to Know? Journal of Law, Medicine & Ethics 39 (4):605-613.
Leslie A. Meltzer (2006). Undesirable Implications of Disclosing Individual Genetic Results to Research Participants. American Journal of Bioethics 6 (6):28 – 30.
Vardit Ravitsky & Benjamin S. Wilfond (2006). Disclosing Individual Genetic Results to Research Participants. American Journal of Bioethics 6 (6):8 – 17.
Added to index2009-07-02
Total downloads2 ( #731,105 of 1,902,713 )
Recent downloads (6 months)1 ( #446,006 of 1,902,713 )
How can I increase my downloads?