Consumer Familiarity, Perspectives and Expected Value of Personalized Medicine With a Focus on Applications in Oncology

Susan Garfield; Michael P Douglas; Karen V MacDonald; Deborah A Marshall; Kathryn A Phillips


Personalized Medicine. 2015;12(1):13-22. 

In This Article

Abstract and Introduction


Aims Knowledge of consumer perspectives of personalized medicine (PM) is limited. Our study assessed consumer perspectives of PM, with a focus on oncology care, to inform industry, clinician and payer stakeholders' programs and policy.

Materials & Methods A nationally representative survey of 602 US consumers' ≥30 years old explored familiarity, perspectives and expected value of PM.

Results Most (73%) respondents have not heard of 'personalized medicine,' though after understanding the term most (95%) expect PM to have a positive benefit. Consumer's willingness to pay is associated with products' impact on survival, rather than predicting disease risk. If testing indicates consumers are not candidates for oncology therapies, most (84%) would seek a second opinion or want therapy anyway.

Conclusions Understanding heterogeneity in consumer perspectives of PM can inform program and policy development.


While much has been written about the benefits of personalized medicine to determine response to particular pharmacogenomics treatments, limited work has been done to consider the clinical, psychosocial and cost implications to consumers of genetic testing and personalized medicine approaches.[1] Care providers do not yet know how patient care pathways will evolve to include new personalized diagnostic and treatment options. This leads to questions about consumer/patient reactions to being identified as responders versus nonresponders of targeted therapies, information about their risk and future looking prognostics. As with any sea change in clinical practice comes several potential opportunities and challenges for consumers. Today, not enough is known about consumer perspectives and preferences for personalized medicine approaches.[2]

Our study objective was to assess US consumer perspectives of personalized medicine, with a specific focus on oncology care, to inform industry, clinician and payer stakeholders' engagement activities and policy development. More representative and generalizable consumer centric information is needed to help manufacturers, clinicians, policy makers and payers understand consumer awareness of personalized medicine and the implications of their familiarity, attitudes and expected behaviors to the roll-out of new care paradigms. Consumer perspectives have key implications for stakeholders attempting to advance the incorporation of personalized medicine into routine practice. Specifically, understanding consumer receptivity to personalized medicine in detail informs how key stakeholders alter and evolve existing programs to meet consumers' actual needs. Examples of this could include: Industry use of patient perspectives to inform value messaging, Clinicians use of patient perspectives to inform patient education, and Payers use of patient perspectives to understand willingness to pay and behavioral outcomes associated with genetic testing. Each application of consumer perspectives on personalized medicine is relevant to the rapidly changing oncology care landscape today.