Are biobank donor families worried about a confidentiality breach?
New Rochelle, NY, April 5, 2017-A new study examines how well families that donate tissue to a biobank — or decide not to donate — understand the risk and implications of a potential confidentiality breach. The technology to acquire genome sequence data from biobanked 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, as discussed in an article published in Genetic Testing and Molecular Biomarkers, a peer-reviewed journal from Mary Ann Liebert, Inc., publishers. The article is part of a special issue on biobanking that is available free on the Genetic Testing and Molecular Biomarkers website until May 5, 2017.
The article entitled "Confidentiality in Biobanking Research: A Comparison of Donor and Nondonor Families' Understanding of Risks," is coauthored by Laura Siminoff, PhD, Heather Traino, PhD, MPH, Temple University (Philadelphia, PA) and colleagues from Temple and Virginia Commonwealth University (Richmond, VA), representing the GTEx Consortium. The researchers explore the knowledge and opinions of family decision-makers regarding the risks associated with participating in biobanking research, such as the Genotype-Tissue Expression (GTEx) Project. Concern levels differed between donor families and those that refused donation. Families were often willing to trade access to research results for absolute confidentiality associated with participation.
"The knowledge dichotomy separating those who choose to participate in genetic studies versus those that do not suggests that perhaps better health and medical education of the populace would be warranted," says Genetic Testing and Molecular Biomarkers Editor-in-Chief Garth D. Ehrlich, PhD, FAAAS, Center for Genomic Sciences and Center for Advanced Microbial Processing, Institute for Molecular Medicine and Infectious Disease, Drexel College of Medicine (Philadelphia, PA).
Research reported in this publication was supported by the National Institutes of Health under Award Numbers HHSN 261200800001E. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
About the Journal
Genetic Testing and Molecular Biomarkers is an authoritative peer-reviewed journal published 12 times per year online with open access options and in print 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. Tables of content and a free sample issue may be viewed on the Genetic Testing and Molecular Biomarkers website.
About the Publisher
Mary Ann Liebert, Inc., publishers is a privately held, fully integrated media company known for establishing authoritative peer-reviewed journals in many promising areas of science and biomedical research, including Human Gene Therapy and OMICS: A Journal of Integrative Biology. Its biotechnology trade magazine, GEN (Genetic Engineering & Biotechnology News), was the first in its field and is today the industry's most widely read publication worldwide. A complete list of the firm's 80 journals, books, and newsmagazines is available on the Mary Ann Liebert, Inc., publishers website.
Mary Ann Liebert, Inc. 140 Huguenot Street, New Rochelle, NY 10801-5215 http://www.liebertpub.com Phone (914) 740-2100 (800) M-LIEBERT Fax (914) 740-2101