A small survey of tissue biobank family donors suggests the need for discussion of risk of confidentiality breach during consent, according to a new study.
Biobanks in the United States are estimated to store more than 500 million human biospecimens. Theoretically, a breach to the public of this confidential genetic information linked with the donor’s identity could lead to discrimination by insurance or employers, familial strain, or psychological harm, according to the researchers.
Furthermore, dataset protection is being outpaced by the rate of genomic analysis technologies making a confidentiality breach more plausible.
Laura A. Siminoff, PhD, of the College of Public Health at Temple University in Philadelphia, and colleagues sought to better understand the opinions and knowledge of family decision makers in regards to the risks associated with biobank research participation.
Data was collected via survey by the organ procurement requesters (N = 37) and telephoned interviews of family decision makers (N = 85) involved in the Genotype-Tissue Expression (GTEx) Project. The GTEx project is funded by the National Institutes of Health (NIH) and is examining the relationships between gene expression and genetic variation.
The investigators found that donor families were likely to understand that there was some risk that a breach of confidentiality could lead to patient identification (P <.05). Further, donor families also seemed to understand that researchers did not have access to the patient’s exact identity (P <.05).
Those who refused biobank donation had more concerns about the risks of donation. However, some were willing to trade absolute confidentiality for participation in research and return of results.
“Given the potential to improve the health and welfare of probands and their genetically related family members, the return of results could be an incentive and ameliorate concerns about risks and potential exploitation. Our data indicate that the majority of participants would welcome the opportunity to receive at least some results as a tangible benefit of participation, particularly if the results were validated and clinically actionable,” the researchers write.
1. Siminoff LA, Wilson-Genderson M, Mosavel M, Barker L, Trgina J, Traino HM. Confidentiality in biobanking research: a comparison of donor and nondonor families’ understanding of risks. Genet Test Mol Biomarkers. 2017;21(3):171-177.