Theme 1: Social values and personalized medicine

Theme 1: Characterizing and measuring Canadian social values on personalized medicine (PM) technologies and developing a value framework to support regulatory and reimbursement policy and decision-making.

Theme Leader One: Dr. Devidas Menon, School of Public Health, University of Alberta

Dr. Menon’s research group aims to characterize and measure the values that patients and the public believe should guide regulatory (at the federal level) and reimbursement (at the provincial level) processes for PM technologies. The research examines the perceptions and values of various ‘publics’ regarding PM technologies, the rapid adoption of innovative technologies, and risk and uncertainty regarding the safety, effectiveness, and impact on population health of PM technologies. Uncertainty arises from the different types of evidence available. The relative importance placed on each type of evidence and the willingness to accept uncertainty in that evidence are, in part, a reflection of what society values. The values that are relevant to decisions in the regulatory and reimbursement policy areas are likely to differ. However, finite resources mean that decisions in one area of public policy have implications for other areas, and establishing coherence in the value attached to different outcomes across the public policy arena for PM technologies is a desirable objective. Clinician perceptions are also addressed, given their importance in health system adoption of PM. The methods include surveys, systematic reviews and critical appraisal, citizens’ juries, and semi-structured interviews.

Interested and Engaged Stakeholders: regulatory agency and healthcare system decision-makers.

Theme Leader Two: Timothy Caulfield, Faculty of Law, University of Alberta

Prof Caulfield’s team explores public representations and perceptions of PM, specifically, how genetic risk information and PM are represented in popular culture and in the marketing of genetic tests. His team uses content analysis of a wide range of popular culture sources (e.g., print and online media as well as new media, such a blogs and social networking sites) to examine claims about efficacy and cost effectiveness.

The team will also survey Canadian public perceptions of the utility of genetic risk information, including, awareness of public and private testing services, perceived value of genetic risk information as compared to other forms of health risk, and a willingness to pay for such information. In addition, the team is interviewing healthcare providers about their perceptions of genetic risk information, their knowledge of public and private genetic testing services in Canada, as well as the relevance of medical school training relevant for the adoption of PM.

Combined, these research initiatives will provide important data on (1) how the public may react to and utilize genetic risk information and (2) the potential resource burden genetic testing could impose on the healthcare system because healthcare providers may be ill-equipped to respond to questions about genetics and genetic test results.

Interested and Engaged Stakeholders: academia, educators, healthcare system decision-makers, the public.