Experiences and attitudes of genome investigators regarding return of individual genetic test results

Rachel B. Ramoni, Amy L. McGuire, Jill Oliver Robinson, Debra S. Morley, Sharon E. Plon, Steven Joffe

Research output: Contribution to journalArticle

Abstract

Purpose:Whether and how to return individual genetic results to study participants is among the most contentious policy issues in contemporary genomic research.Methods:We surveyed corresponding authors of genome-wide association studies, identified through the National Human Genome Research Institute's Catalog of Published Genome-Wide Association Studies, to describe the experiences and attitudes of these stakeholders.Results:Of 357 corresponding authors, 200 (56%) responded. One hundred twenty-six (63%) had been responsible for primary data and sample collection, whereas 74 (37%) had performed secondary analyses. Only 7 (4%) had returned individual results within their index genome-wide association studies. Most (69%) believed that return of results to individual participants was warranted under at least some circumstances. Most respondents identified a desire to benefit participants' health (63%) and respect for participants' desire for information (57%) as major motivations for returning results. Most also identified uncertain clinical utility (76%), the possibility that participants will misunderstand results (74%), the potential for emotional harm (61%), the need to ensure access to trained clinicians (59%), and the potential for loss of confidentiality (51%) as major barriers to return of results.Conclusion:Investigators have limited experience returning individual results from genome-scale research, yet most are motivated to do so in at least some circumstances.

Original languageEnglish (US)
Pages (from-to)882-887
Number of pages6
JournalGenetics in Medicine
Volume15
Issue number11
DOIs
StatePublished - Nov 2013

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Genome-Wide Association Study
Research Personnel
Genome
National Human Genome Research Institute (U.S.)
Confidentiality
Insurance Benefits
Research
Motivation

Keywords

  • incidental findings
  • return of results

ASJC Scopus subject areas

  • Genetics(clinical)

Cite this

Ramoni, R. B., McGuire, A. L., Robinson, J. O., Morley, D. S., Plon, S. E., & Joffe, S. (2013). Experiences and attitudes of genome investigators regarding return of individual genetic test results. Genetics in Medicine, 15(11), 882-887. https://doi.org/10.1038/gim.2013.58

Experiences and attitudes of genome investigators regarding return of individual genetic test results. / Ramoni, Rachel B.; McGuire, Amy L.; Robinson, Jill Oliver; Morley, Debra S.; Plon, Sharon E.; Joffe, Steven.

In: Genetics in Medicine, Vol. 15, No. 11, 11.2013, p. 882-887.

Research output: Contribution to journalArticle

Ramoni, RB, McGuire, AL, Robinson, JO, Morley, DS, Plon, SE & Joffe, S 2013, 'Experiences and attitudes of genome investigators regarding return of individual genetic test results', Genetics in Medicine, vol. 15, no. 11, pp. 882-887. https://doi.org/10.1038/gim.2013.58
Ramoni, Rachel B. ; McGuire, Amy L. ; Robinson, Jill Oliver ; Morley, Debra S. ; Plon, Sharon E. ; Joffe, Steven. / Experiences and attitudes of genome investigators regarding return of individual genetic test results. In: Genetics in Medicine. 2013 ; Vol. 15, No. 11. pp. 882-887.
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