BRCA1/2 Variant Data-Sharing Practices. Issue 1 (March 2019)

• Record Type: Journal Article
• Authors: Bollinger, Juli M.; Sanka, Abhi; Dolman, Lena; Liao, Rachel G.; Cook-Deegan, Robert
• Other Names: Cook-Deegan Robert guest-editor.; Majumder Mary A. guest-editor.; McGuire Amy L. guest-editor.
• Is Part Of: Journal of law, medicine & ethics. Volume 47:Issue 1(2019)
• Page Start: 88
• Page End: 96
• Publication Date: 2019-03
• Subjects: Medical laws and legislation -- United States -- Periodicals; Medical care -- Law and legislation -- United States -- Periodicals; Medical ethics -- Periodicals; Jurisprudence -- Periodicals; Legislation, Medical -- Periodicals; Legislation, Nursing -- Periodicals; Ethics -- Periodicals; Forensic Medicine -- Periodicals; Nursing -- Periodicals; Medicine -- Periodicals; Societies -- Periodicals; Medical care -- Law and legislation; Medical ethics; Medical laws and legislation; United States; Periodicals; 344.73041
• DOI: 10.1177/1073110519840487
• Languages: English
• ISSNs: 1073-1105

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.