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Biobanking Study: Donor Families Would Trade Access for Confidentiality

The technology to acquire genome sequence data from biobanked tissue samples has outpaced the ability to protect large databases from security breaches, raising the issue of whether loss of confidentiality risk should be discussed with donor families during the consent process.

A new study coauthored by College of Public Health Dean Laura A. Siminoff and Associate Professor Heather Traino examines how well families who donate tissue to a biobank—or decide not to donate—understand the risks and implications of a potential confidentiality breach.

Their article, “Confidentiality in Biobanking Research: A Comparison of Donor and Nondonor Families' Understanding of Risks,” is part of a special issue on biobanking that is available free on Genetic Testing and Molecular Biomarkers until Friday, May 5.

Siminoff, Traino, and colleagues from Temple University and Virginia Commonwealth University looked into what families who made decisions about donating a deceased’s tissues to a biobank for use in genetic research knew about associated risks including privacy and confidentiality. They learned that families who agreed to donate were more likely to know that there was a risk that a patient's identity could be revealed through a breach of confidentiality; but they were less concerned about it than families who did not donate. The donor families were also more likely to understand that researchers would not have access to the patient's exact identity. Family decision-makers who refused donation were more concerned about risks than donors and reported lower levels of support for medical research in general. The project was part of the Genotype-Tissue Expression Project (GTEx), an NIH-funded study. 

“Tissue donation for research is taking on increasing importance in understanding the role that genes and their interaction with the environment play in the development of disease. However, for most of the public, this is still terra incognito,” Siminoff said.

“The knowledge dichotomy separating those who choose to participate in genetic studies versus those who do not suggests that perhaps better health and medical education of the populace would be warranted,” Genetic Testing and Molecular Biomarkers Editor-in-Chief Garth D. Ehrlich said in a statement.

Genetic Testing and Molecular Biomarkers is a peer-reviewed journal published 12 times per year that reports on all aspects of genetic testing, including molecular and biochemical-based tests and varied clinical situations; ethical, legal, social, and economic aspects of genetic testing; and issues concerning effective genetic counseling. 

Read more research from the Department of Social and Behavioral Sciences.

Posted:  April 13, 2017