Literature DB >> 18316466

Duty to disclose what? Querying the putative obligation to return research results to participants.

F A Miller1, R Christensen, M Giacomini, J S Robert.   

Abstract

Many research ethics guidelines now oblige researchers to offer research participants the results of research in which they participated. This practice is intended to uphold respect for persons and ensure that participants are not treated as mere means to an end. Yet some scholars have begun to question a generalised duty to disclose research results, highlighting the potential harms arising from disclosure and questioning the ethical justification for a duty to disclose, especially with respect to individual results. In support of this view, we argue that current rationales for a duty of disclosure do not form an adequate basis for an ethical imperative. We review policy guidance and scholarly commentary regarding the duty to communicate the results of biomedical, epidemiological and genetic research to research participants and show that there is wide variation in opinion regarding what should be disclosed and under what circumstance. Moreover, we argue that there is fundamental confusion about the notion of "research results," specifically regarding three core concepts: the distinction between aggregate and individual results, amongst different types of research, and across different degrees of result veracity. Even where policy guidance and scholarly commentary have been most forceful in support of an ethical imperative to disclose research results, ambiguity regarding what is to be disclosed confounds ethical action.

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Year:  2008        PMID: 18316466     DOI: 10.1136/jme.2006.020289

Source DB:  PubMed          Journal:  J Med Ethics        ISSN: 0306-6800            Impact factor:   2.903


  57 in total

1.  The meaning of genetic research results: reflections from individuals with and without a known genetic disorder.

Authors:  R Jean Cadigan; Marsha Michie; Gail Henderson; Arlene M Davis; Laura M Beskow
Journal:  J Empir Res Hum Res Ethics       Date:  2011-12       Impact factor: 1.742

2.  Ethical challenges in genotype-driven research recruitment.

Authors:  Laura M Beskow; Kristen N Linney; Rodney A Radtke; Erin L Heinzen; David B Goldstein
Journal:  Genome Res       Date:  2010-04-23       Impact factor: 9.043

3.  Changing perspectives in biobank research: from individual rights to concerns about public health regarding the return of results.

Authors:  Joanna Stjernschantz Forsberg; Mats G Hansson; Stefan Eriksson
Journal:  Eur J Hum Genet       Date:  2009-05-27       Impact factor: 4.246

Review 4.  Informed consent in genomics and genetic research.

Authors:  Amy L McGuire; Laura M Beskow
Journal:  Annu Rev Genomics Hum Genet       Date:  2010       Impact factor: 8.929

5.  Utilizing Focus Groups with Potential Participants and Their Parents: An Approach to Inform Study Design in a Large Clinical Trial.

Authors:  Sandeep Kadimpati; Jennifer B McCormick; Yichen Chiu; Ashley B Parker; Aliya Z Iftikhar; Randall P Flick; David O Warner
Journal:  AJOB Empir Bioeth       Date:  2014-01-01

6.  Public perspectives on returning genetics and genomics research results.

Authors:  J O'Daniel; S B Haga
Journal:  Public Health Genomics       Date:  2011-05-07       Impact factor: 2.000

7.  Not so simple: a quasi-experimental study of how researchers adjudicate genetic research results.

Authors:  Robin Zoe Hayeems; Fiona Alice Miller; Li Li; Jessica Peace Bytautas
Journal:  Eur J Hum Genet       Date:  2011-03-16       Impact factor: 4.246

8.  Individual genetic and genomic research results and the tradition of informed consent: exploring US review board guidance.

Authors:  Christian Simon; Laura A Shinkunas; Debra Brandt; Janet K Williams
Journal:  J Med Ethics       Date:  2012-03-05       Impact factor: 2.903

9.  Communicating the results of research: how do participants of a cardiac rehabilitation RCT prefer to be informed?

Authors:  Hasnain Dalal; Jennifer Wingham; Colin Pritchard; Sharon Northey; Philip Evans; Rod S Taylor; John Campbell
Journal:  Health Expect       Date:  2009-11-10       Impact factor: 3.377

10.  Health research participants' preferences for receiving research results.

Authors:  Christopher R Long; M Kathryn Stewart; Thomas V Cunningham; T Scott Warmack; Pearl A McElfish
Journal:  Clin Trials       Date:  2016-08-24       Impact factor: 2.486

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