BRCA1/2 Variant Data-Sharing Practices

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

doi:10.1177/1073110519840487

BRCA1/2 Variant Data-Sharing Practices

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

Future of Innovation in Society, School for the (SFIS)

Research output: Contribution to journal › Comment/debate › peer-review

6 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 language	English (US)
Pages (from-to)	88-96
Number of pages	9
Journal	Journal of Law, Medicine and Ethics
Volume	47
Issue number	1
DOIs	https://doi.org/10.1177/1073110519840487
State	Published - Mar 1 2019

ASJC Scopus subject areas

Issues, ethics and legal aspects
Health Policy

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title = "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.",

author = "Bollinger, {Juli M.} and Abhi Sanka and Lena Dolman and Liao, {Rachel G.} and Robert Cook-Deegan",

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AU - Bollinger, Juli M.

AU - Sanka, Abhi

AU - Dolman, Lena

AU - Liao, Rachel G.

AU - Cook-Deegan, Robert

PY - 2019/3/1

Y1 - 2019/3/1

N2 - 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.

AB - 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.

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BRCA1/2 Variant Data-Sharing Practices

Abstract

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