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. 2013 Nov;15(11):882-7.
doi: 10.1038/gim.2013.58. Epub 2013 May 2.

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

Rachel B Ramoni  1 , Amy L McGuire, Jill Oliver Robinson, Debra S Morley, Sharon E Plon, Steven Joffe
Affiliations

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

Rachel B Ramoni et al. Genet Med. 2013 Nov.

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.

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Figures

Figure 1
Figure 1. Motivations for the return of individual genetic research results among GWAS investigators
Figure 2
Figure 2. Barriers to the return of individual genetic research results among GWAS investigators
See this image and copyright information in PMC

Comment in

  • Let us ask better questions.
    Clayton EW, Kelly SE. Clayton EW, et al. Genet Med. 2013 Nov;15(11):871-2. doi: 10.1038/gim.2013.68. Epub 2013 May 23. Genet Med. 2013. PMID: 23703684 No abstract available.

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