BRCA1/2 Variant Data-Sharing Practices

Juli M Bollinger; Abhi Sanka; Lena Dolman; Rachel G Liao; Robert Cook-Deegan

doi:10.1177/1073110519840487

BRCA1/2 Variant Data-Sharing Practices

J Law Med Ethics. 2019 Mar;47(1):88-96. doi: 10.1177/1073110519840487.

Authors

Juli M Bollinger¹, Abhi Sanka¹, Lena Dolman¹, Rachel G Liao¹, Robert Cook-Deegan¹

Affiliation

¹ Juli M. Bollinger, M.S., is a Research Associate in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine and a Research Associate and Associate Faculty at the Berman Institute of Bioethics at Johns Hopkins University. Abhi Sanka is a Science Policy Fellow at the Science and Technology Policy Institute. He was formerly a Research Associate at the School for the Future of Innovation in Society at Arizona State University. Lena Dolman, M.S., is currently a medical student at McMaster University, Hamilton, Ontario, Canada. She was formerly a manager of Strategy and Outreach, as well as manager of the Clinical & Phenotypic Data Capture Work Stream, for the Global Alliance for Genomics and Health. Rachel G. Liao, Ph.D., is a Scientific Advisor to the Director at the Broad Institute of MIT and Harvard. She was formerly a manager for the Global Alliance for Genomics and Health, where she led the successful launch and growth of the BRCA Challenge project and its foundational product, the BRCA Exchange. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. He is a physician and molecular biologist who turned to policy and then entered academe through Georgetown, Stanford, and Duke Universities before joining ASU.

Abstract

Accessing BRCA1/2 data facilitates the detection of disease-associated variants, which is critical to informing clinical management of risks. BRCA1/2 data sharing is complex and many practices exist. We describe current BRCA1/2 data-sharing practices, in the United States and globally, and discuss obstacles and incentives to sharing, based on 28 interviews with personnel at U.S. and non-U.S. clinical laboratories and databases. Our examination of the BRCA1/2 data-sharing landscape demonstrates strong support for and robust sharing of BRCA1/2 data around the world, increasing global accesses to diverse data sets.

Publication types

Research Support, N.I.H., Extramural

MeSH terms

BRCA1 Protein / genetics*
BRCA2 Protein / genetics*
Databases, Genetic*
Genetic Testing
Humans
Information Dissemination / methods*
Internationality
Laboratories
United States

Substances

BRCA1 Protein
BRCA1 protein, human
BRCA2 Protein
BRCA2 protein, human

Grants and funding

R01 HG008918/HG/NHGRI NIH HHS/United States