BRCA1/2 Variant Data-Sharing Practices

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

Research output: Contribution to journalComment/debatepeer-review

6 Scopus citations


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
JournalJournal of Law, Medicine and Ethics
Issue number1
StatePublished - Mar 1 2019

ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health Policy


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