Consent to a Postmortem Tissue Procurement Study: Distinguishing Family Decision Makers' Knowledge of the Genotype-Tissue Expression Project.

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.

journal_name

Biopreserv Biobank

authors

Siminoff LA,Wilson-Genderson M,Gardiner HM,Mosavel M,Barker KL

doi

10.1089/bio.2017.0115

subject

Has Abstract

pub_date

2018-06-01 00:00:00

pages

200-206

issue

3

eissn

1947-5535

issn

1947-5543

journal_volume

16

pub_type

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