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Comparative Study
. 2016 Jan;18(1):82-8.
doi: 10.1038/gim.2015.38. Epub 2015 Apr 9.

Family decision maker perspectives on the return of genetic results in biobanking research

Laura A Siminoff  1 , Heather M Traino  1 , Maghboeba Mosavel  2 , Laura Barker  2 , Glencora Gudger  2 , Anita Undale  3
Affiliations
Comparative Study

Family decision maker perspectives on the return of genetic results in biobanking research

Laura A Siminoff et al. Genet Med. 2016 Jan.

Abstract

Purpose: There are many ethical considerations regarding the return of genetic results to biobanking participants, especially when biobanks collect samples from deceased organ and tissue donors that require the authorization of a family decision maker (FDM). This article explores FDM knowledge and opinions regarding return of genetic results in the context of the Genotype-Tissue Expression (GTEx) Project, which does not return results to participants.

Methods: Data collection included a survey completed by Organ Procurement Organization requesters (n = 22) and semistructured telephone interviews with FDM (n = 55).

Results: Nearly every FDM wanted some form of genetic results returned. Information regarding treatable diseases (94.3%) and diseases that could affect their children (84.9%) were more desirable than that regarding untreatable diseases (71.7%). Sixty percent of FDMs understood that GTEx would not return genetic results. FDMs were four times more likely to have correct knowledge of the GTEx policy when their GTEx requester reported discussing the topic with them.

Conclusion: FDMs from the GTEx project were interested in receiving genetic test results. Marked changes in the infrastructure of the GTEx would be required to alter the policy. Regardless, care must be taken to ensure that the return policy is clearly communicated with FDMs to dispel misconceptions.Genet Med 18 1, 82-88.

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References

    1. Parens E, Appelbaum P, Chung W. Incidental findings in the era of whole genome sequencing? Hastings Center Report. 2013;43(4):16–19. - PMC - PubMed
    1. Zawati MH, Knoppers BM. International normative perspectives on the return of individual research results and incidental findings in genomic biobanks. Genetics in Medicine. 2012;14(4):484–489. - PubMed
    1. Wolf SM. Return of Individual Research Results and Incidental Findings: Facing the Challenges of Translational Science. Annual review of genomics and human genetics. 2013;14:557–577. - PMC - PubMed
    1. Knoppers BM, Deschênes M, Zawati MnH, Tassé AM. Population studies: return of research results and incidental findings Policy Statement. European Journal of Human Genetics. 2013;21(3):245–247. - PMC - PubMed
    1. Beskow LM, Burke W. Offering individual genetic research results: context matters. Science translational medicine. 2010;2(38) - PMC - PubMed

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