Public Interest in Precision Medicine

A number of regulatory frameworks governing access to health data for research require it to be in the public interest (or similar concepts). Committees who apply these frameworks have the challenging task to define the concept of ‘public interest’ in practice. This, without existing evidence of what the public believes to be in their interest though aligning with their view, is crucial to maintain national trust in large-scale health data sharing. 

We applied a mixed-method approach consisting of in-depth focus group interviews, followed by quantitative surveying, to study public perspectives in Singapore on what research is in the public interest.

Findings show that ‘Potential benefits for Singapore’ was considered an important - but not a necessary - condition for research being in the public interest. Most doubts about public interest revolved around research of private insurance companies that might lead to stigmatisation or involving sensitive data of minors.