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BRCA1/2 Variant Data-Sharing Practices

  • Juli M. Bollinger (Creator)
  • Abhi Sanka (Contributor)
  • Lena Dolman (Creator)
  • Rachel G. Liao (Creator)
  • Robert (Bob or BCD) Cook-Deegan (Creator)
  • Mary A. Majumder (Creator)

Dataset

Description

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.
Date made available2019
Publisherfigshare SAGE Publications
  • BRCA1/2 Variant Data-Sharing Practices

    Bollinger, J. M., Sanka, A., Dolman, L., Liao, R. G. & Cook-Deegan, R., Mar 1 2019, In: Journal of Law, Medicine and Ethics. 47, 1, p. 88-96 9 p.

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

    Open Access

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