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Citizens' perspectives on personalized medicine: a qualitative public deliberation study
Yvonne Bombard1, Julia Abelson, Dorina Simeonov
1Yale University, School of Public Health & Memorial Sloan-Kettering Cancer Center, Center for Health Policy and Outcomes and Clinical Genetics Service, New York, NY, USA.
European Journal of Human Genetics : EJHG
|January 24, 2013
Summary
Citizens expect personalized medicine to improve care but worry about costs and access. They emphasize preparing the healthcare system for integration and equitable treatment availability.
Area of Science:
- Genomics and Health Policy
- Public Deliberation Studies
- Health Technology Assessment
Background:
- Personalized medicine is a novel genomics policy issue with evolving public expectations.
- Understanding citizen values is crucial for effective and equitable implementation.
Purpose of the Study:
- To explore citizens' informed values and expectations regarding personalized medicine.
- To assess public understanding of personalized medicine's policy implications.
Main Methods:
- Qualitative public deliberation study using a citizens' reference panel in Ontario, Canada.
- Panel comprised diverse participants (14 individuals, aged 18-71) from various health regions.
Main Results:
- Shared expectations for personalized medicine to enhance care quality, contingent on clinical validity and effectiveness.
- Concerns raised regarding cost-effectiveness and potential for stratified access to treatment.
- Public questioned the technological imperative, advocating for healthcare system readiness and equitable access irrespective of test results.
Conclusions:
- This study offers early insights into public values concerning personalized medicine.
- Demonstrates the public's capacity for reasoned judgment on complex health policy issues.
- Highlights the need for public deliberation to guide equitable and effective translation of personalized medicine.
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