BRCA1/2 Variant Data-Sharing Practices

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

Research output: Contribution to journalArticle

1 Citation (Scopus)

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

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Information Dissemination
Risk Management
Motivation
Databases
Interviews

ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health Policy

Cite this

BRCA1/2 Variant Data-Sharing Practices. / Bollinger, Juli M.; Sanka, Abhi; Dolman, Lena; Liao, Rachel G.; Cook-Deegan, Robert.

In: The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, Vol. 47, No. 1, 01.03.2019, p. 88-96.

Research output: Contribution to journalArticle

Bollinger, Juli M. ; Sanka, Abhi ; Dolman, Lena ; Liao, Rachel G. ; Cook-Deegan, Robert. / BRCA1/2 Variant Data-Sharing Practices. In: The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics. 2019 ; Vol. 47, No. 1. pp. 88-96.
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