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

Genomic information collected in research settings is a valuable resource that can be shared for future (secondary) research with the consent of the individual. Whether individuals participating in genomic research are comfortable with broad consent and all research sharing scenarios is largely unknown. The Australian Reproductive Genetic Carrier Screening Project (Mackenzie's Mission) investigated the feasibility and acceptability of population reproductive carrier screening for severe recessive genetic conditions occurring in childhood. Enrolment and consent for participation was completed digitally using an online Portal or REDCap. Consent included an option to complete ten specific questions about preferences for future research use of samples and data. Preferences for future research were completed by 23.5% (4288) of individuals. The remaining 76.5% gave broad consent to data sharing. Those who chose to complete the questions shared similar demographics to the rest of the cohort. Individuals were most permissive of sharing with not-for-profit (78.0%) and university (78.2%) research organisations, for general (79.8%) and health / medical / biomedical research (82.2%). People were less likely to consent for use by governments (59.2%) and commercial organisations (33.7%). Nearly 60% of people want to be notified every time their data is shared. Updates to consent preferences were made 1785 times, by 282 people. This study supports the need for research programmes to facilitate flexible models of consent, including specific and dynamic consent. It also demonstrates a scalable model in which participant-led choices contribute to reduced ambiguity about data sharing permissions.