Challenges to Building a Gene Variant Commons to Assess Hereditary Cancer Risk: Results of a Modified Policy Delphi...

Area of Science:

• Genetics
• Bioinformatics
• Public Health Policy

Background:

• Clinical interpretation of hereditary cancer risk variants necessitates pooled genetic data resources.
• Existing initiatives face challenges due to unresolved policy issues in data sharing.

Purpose of the Study:

• To identify and analyze critical policy issues impacting the development of a cancer gene variant commons.
• To explore policy options across five key domains: incentives, financial sustainability, privacy, equity, and data quality.

Main Methods:

• A modified policy Delphi process involving diverse stakeholder experts.
• Analysis of policy issues and options generated by Delphi participants.

Main Results:

• Identified policy challenges in five critical domains for establishing a cancer gene variant commons.
• Generated actionable policy options to facilitate data sharing and resource development.

Conclusions:

• Addressing policy domains like incentives, privacy, and equity is vital for an effective cancer gene variant commons.
• This work provides a foundation for further policy evaluation to improve hereditary cancer research and patient care.