David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
Learn more about PhilPapers
American Journal of Bioethics 6 (6):8 – 17 (2006)
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 it should be offered routinely. Different results may therefore require different decisions even within the same study. We argue that the threshold of clinical utility for disclosing a result in a research study should be lower than the threshold used for clinical use of the same result. The personal meaning of a result provides additional criteria for evaluation. Finally, the context of the study allows for a more nuanced analysis by addressing the investigators' capabilities for appropriate disclosure, participants' alternative access to the result, and their relationship with the investigators. This analysis shows that the same result may require different decisions in different contexts.
|Keywords||No keywords specified (fix it)|
|Categories||categorize this paper)|
|Through your library||Configure|
Similar books and articles
Conrad V. Fernandez, Eric Kodish, Susan Shurin & Charles Weijer, Offering to Return Results to Research Participants: Attitudes and Needs of Principal Investigators in the Children's Oncology Group.
Anne Marie Tassé (2011). The Return of Results of Deceased Research Participants. Journal of Law, Medicine and Ethics 39 (4):621-630.
Emmanuelle Lévesque, Yann Joly & Jacques Simard (2011). Return of Research Results: General Principles and International Perspectives. Journal of Law, Medicine and Ethics 39 (4):583-592.
Leslie A. Meltzer (2006). Undesirable Implications of Disclosing Individual Genetic Results to Research Participants. American Journal of Bioethics 6 (6):28 – 30.
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.
David Wendler & Christine Grady (2008). What Should Research Participants Understand to Understand They Are Participants in Research? Bioethics 22 (4):203–208.
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 and Ethics 39 (4):605-613.
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.
Added to index2009-01-28
Total downloads15 ( #88,836 of 1,008,729 )
Recent downloads (6 months)1 ( #64,702 of 1,008,729 )
How can I increase my downloads?