International Data Sharing in Practice: New Technologies Meet Old Governance.

Area of Science:

• Biobanking and Cohort Studies
• Data Governance and Access
• Research Ethics

Background:

• Social structures for data/sample release balance participant privacy with societal benefit.
• Multiple cohorts and biobanks face complex, often conflicting, local, national, and supranational guidelines.
• Existing governance structures risk impeding scientific advancement within research consortia.

Purpose of the Study:

• To examine the values influencing data access decisions in multi-cohort collaborations.
• To assess the impact of current data access governance on scientific potential.
• To propose improvements for data access systems in large consortia.

Main Methods:

• Ethnographic study of data access decision-making.
• Analysis of epistemic and nonepistemic values in data sharing.
• Evaluation of an integrated co-analysis data approach pilot.

Main Results:

• Contemporary data access governance limited analytic flexibility.
• Dominant values (participant, study, researcher protection) both promoted and inhibited data sharing.
• A 'public good' argument was juxtaposed against protectionist values.

Conclusions:

• Current data access governance needs to protect participant privacy and meet their expectations.
• Review systems must be transparent and unbiased by stakeholder interests.
• Timely and efficient data access procedures are crucial for large consortia.
• New data access governance models require stakeholder input and formal evaluation.