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BRCA1/2 Variant Data-Sharing Practices.


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.

SUBMITTER: Bollinger JM 

PROVIDER: S-EPMC6748872 | biostudies-literature | 2019 Mar

REPOSITORIES: biostudies-literature

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BRCA1/2 Variant Data-Sharing Practices.

Bollinger Juli M JM   Sanka Abhi A   Dolman Lena L   Liao Rachel G RG   Cook-Deegan Robert R  

The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 20190301 1


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 s  ...[more]

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