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A framework for analyzing the ethics of disclosing genetic research findings


Eckstein, L and Garret, JR and Berkman, BE, A framework for analyzing the ethics of disclosing genetic research findings, Journal of Law, Medicine and Ethics, 42, (2) pp. 190-207. ISSN 1748-720X (2014) [Refereed Article]

Copyright Statement

Copyright 2014 American Society of Law, Medicine & Ethics, Inc.

DOI: doi:10.1111/jlme.12135


Whether researchers have an obligation to disclose secondary genetic research findings, and, if so, in what circumstances, remains a matter of heated debate. This paper suggests that much of this confusion is definitional or conceptual in nature. That is, there is significant variability in the way that threshold terms and concepts such as "incidental," "analytic validity," "clinical validity," "clinical relevance," "clinical utility," "clinical significance," and "actionability," are used in the literature, which is impeding efforts to clarify the scope of an obligation to return findings. This paper analyzes the definitional muddle underlying the debate about returning genetic research findings, first, to explain the range of definitions being used in this debate. We go on to propose that, underlying all the seeming confusion and disagreement, three central and widely agreed upon concepts are at work in this debate - validity, value, and volition. Refocusing attention on these core concepts, and their appropriate conceptualizations, can produce a more productive debate regarding the return of genetic research findings.

Item Details

Item Type:Refereed Article
Research Division:Law and Legal Studies
Research Group:Public law
Research Field:Public law not elsewhere classified
Objective Division:Law, Politics and Community Services
Objective Group:Justice and the law
Objective Field:Justice and the law not elsewhere classified
UTAS Author:Eckstein, L (Dr Lisa Eckstein)
ID Code:91103
Year Published:2014
Web of Science® Times Cited:31
Deposited By:Faculty of Law
Deposited On:2014-05-07
Last Modified:2018-02-13
Downloads:5 View Download Statistics

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