BRCA1/2 Variant Data-Sharing Practices

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

Research output: Contribution to journalArticle

2 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)88-96
Number of pages9
JournalThe Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics
Volume47
Issue number1
DOIs
StatePublished - Mar 1 2019

ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health Policy

Fingerprint Dive into the research topics of 'BRCA1/2 Variant Data-Sharing Practices'. Together they form a unique fingerprint.

  • Cite this