Precision Medicine (PM) is gaining prominence in many healthcare sectors with its promise of tailoring disease treatment and prevention to individual factors such as genetics, lifestyle and environment. Central to the development of PM are databanks with health-related information that is stored and readily shared between researchers and authorised healthcare providers. PM’s success will depend on a large proportion of the population contributing biological samples and consenting to share de-identified health information about themselves. As it is not feasible to obtain specific consent each time these data are accessed, participants’ trust in data security and governance systems will also be critical. Understanding what oversight mechanisms might affect participation in PM programmes can assist with the design of trustworthy governance systems.
This presentation reports on preliminary findings from five focus groups conducted in Singapore between May-June 2019, which aimed to explore the ethical concerns Singaporeans may have about participating in a proposed PM programme and how policymakers might address these concerns. Discussion topics centred on (i) concerns about the risks of data sharing and re-identification, (ii) which authorities or institutions Singaporeans trust to safeguard their data and its uses, and (iii) distribution of benefits from PM. Preliminary findings suggest Singaporeans are likely to trust certain government agencies to safeguard the data and distribute benefits; more so than the private sector. However, there may be confusion about which agency to trust, and the limitations of de-identification and consent. Results of this research will inform the design of a survey and Citizen Juries.