Overcoming challenges associated with broad sharing of human genomic data

Area of Science:

• Genomics
• Bioethics
• Data Science

Background:

• The Human Genome Project established a consensus for broad genomic data sharing to maximize societal benefit.
• Current definitions of 'broad data sharing' are imprecise, leading to varied implementation in genomic studies.

Purpose of the Study:

• To identify and clarify interchangeable definitions of 'broad' in genomic data sharing.
• To offer a framework with refined concepts for genomic data sharing.
• To examine challenges and provide recommendations for effective data sharing.

Main Methods:

• Analysis of definitions of 'broad data sharing' used in landmark genomic studies.
• Review of six case studies of public data generation in genomics.
• Identification and discussion of key challenges in genomic data sharing.

Main Results:

• Identified interchangeable definitions of 'broad' with distinct implications for data sharing.
• Presented a framework for clarified concepts in genomic data sharing.
• Highlighted three major challenges: reinterpreting general research use data, governance of public data deposition, and participant disclosure of status.

Conclusions:

• Clearer, standardized definitions of 'broad data sharing' are crucial for equitable and effective implementation.
• Addressing governance, data use limits, and participant consent is essential for advancing genomic data sharing.
• Recommendations are provided to navigate the complexities of genomic data sharing and its ethical considerations.