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Siminoff LA , Wilson-Genderson M , Gardiner HM , Mosavel M , Barker KL
Consent to a Postmortem Tissue Procurement Study: Distinguishing Family Decision Makers' Knowledge of the Genotype-Tissue Expression Project
Biopreserv Biobank. 2018 May 10
PMID: 29746160    PMCID: PMC5995262    URL: https://www.ncbi.nlm.nih.gov/pubmed/29746160
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Abstract
Tissues from postmortem transplantation donors are a viable and productive option for genomic research. This entails obtaining authorization from the family decision makers (FDMs) of deceased donors. This study examined best practices for making such requests within the context of the Genotype-Tissue Expression (GTEx) project, a large national effort to collect reference tissues to establish a genomic biobank and database. Our study interviewed 413 FDMs about their donation experiences. We assessed FDM understanding of important consent concepts varied such as ability to withdraw tissues, the risks of donation, and return of results. Using latent class analysis applied to a subgroup of 188 FDMs who had agreed to participate in GTEx, three groups emerged, representing distinct patterns of comprehension of the GTEx project. Tissue requester gender and use of a GTEx brochure were associated with group membership. Results indicate that more research is needed to improve consent processes with FDMs to facilitate informed decision-making.
Notes
1947-5543 Siminoff, Laura A Wilson-Genderson, Maureen Gardiner, Heather M Mosavel, Maghboeba Barker, Kathryn Laura Journal Article United States Biopreserv Biobank. 2018 May 10. doi: 10.1089/bio.2017.0115.