Individuals' preferences for future biological sample and genomic data sharing in the Australian Reproductive Genetic...

Area of Science:

• Genomics
• Bioethics
• Population Health

Background:

• Genomic research data is valuable for secondary research.
• Participant comfort with broad consent for data sharing is largely unknown.
• Population reproductive carrier screening is feasible and acceptable.

Purpose of the Study:

• Investigate feasibility and acceptability of population reproductive carrier screening.
• Determine participant preferences for future genomic data sharing.
• Assess comfort levels with broad consent versus specific consent scenarios.

Main Methods:

• Digital enrollment and consent via online Portal or REDCap.
• Included optional questions on future research use preferences.
• Collected demographic data and consent preferences from participants.

Main Results:

• 23.5% provided specific consent preferences; 76.5% gave broad consent.
• Participants favored sharing with non-profits (78.0%) and universities (78.2%).
• Lower consent for government (59.2%) and commercial (33.7%) use; 60% want data sharing notifications.

Conclusions:

• Research programs need flexible, dynamic consent models.
• Participant-led choices reduce ambiguity in data sharing permissions.
• Scalable models for managing genomic data consent are demonstrated.