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)
  • Rachel G. Liao (Creator)
  • Mary A. Majumder (Creator)



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

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