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

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 paper explores FDM knowledge and opinions regarding return of genetic results in the context the Genotype-Tissue Expression (GTEx) Project, which does not return results to participants. METHODS: Data collection included a survey completed by organ procurement organization (OPO) requesters (n=22) and semi-structured telephone interviews with FDMs (n= 55). RESULTS: Nearly every FDM wanted some form of genetic results returned. Information on treatable diseases (94.3%) and diseases that could affect their children (84.9%) were more desirable than untreatable diseases (71.7%). Sixty percent of FDMs understood that GTEx would not return genetic results. FDMs were 4 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 GTEx would be required to alter the policy. Regardless, care must be taken to ensure that the return policy is clearly communicated with FDMs in order to dispel misconceptions.