RESEARCH

Publications


Challenges to Building a Gene Variant Commons to Assess Hereditary Cancer Risk: Results of a Modified Policy Delphi Panel Deliberation
July 6, 2021

This paper describes policy issues and options generated by Delphi participants in five domains critical to the development of an effective cancer gene variant commons: incentives, financial sustainability, privacy and security, equity, and data quality.

https://www.mdpi.com/2075-4426/11/7/646
Payer reimbursement practices and incentives for improving interpretation of germline genetic testing
July 9, 2023

Data sharing by laboratories is critical to addressing the VUS problem. However, barriers to sharing and an absence of incentives have limited laboratory contributions to the ClinVar database. Payers can play a crucial role in the expansion of knowledge and effectiveness of genetic testing.

https://academic.oup.com/jlb/article/10/2/lsad020/7218896
Policy options to facilitate cancer genomic variant data sharing: outcomes of a modified policy Delphi
July 14, 2023

Sharing cancer gene variant and relevant clinical data could accelerate progress in cancer genomics. However, data sharing is currently impeded by issues related to financial sustainability, equity, incentives, privacy and security, and data quality.

https://academic.oup.com/jlb/article/10/2/lsad022/7222293