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Citizens’ preferences for next generation sequencing technologies in biomedical research and medicine: a mixed methods approach

  • Project Leaders: Dean Regier
  • Institutions: BC Cancer (Previously BC Cancer Agency (BCCA))
  • Budget: $50000
  • Program/Competition: Societal Issues Competiton
  • Genome Centre(s): Genome British Columbia
  • Fiscal Year: 2017
  • Status: Closed

Precision medicine uses information about a patient’s genomic profile to better prevent, treat, and predict disease course. New precision medicine technologies provide a large amount of genomic information with implications at the individual, family, and societal level. To deliver healthcare that is consistent with societal expectations, research on the value of precision medicine technologies is needed. The objective of this study was to estimate patient demand and value for precision medicine as described by health and non-health outcomes.

Dr. Dean Regier, a Scientist at BC Cancer, conducted two focus groups and individual interviews to examine  9 attributes considered important for the decision to undergo genomic testing. This information was used to develop a discrete choice experiment survey ? a quantitative method used in healthcare to elicit preferences from participants without directly asking them to state their preferred options.  

Over 1100 Canadians from across all provinces responded to the survey. The most important attributes identified were quality of life, expected survival gains, cost of testing, probability of benefit and medical expert agreement on treatment change. Using a clinically available expression profiling assay for breast cancer recurrence as a case study, results suggest that people valued implemented genomic assays within the Canadian healthcare system at a cost of $3775. If more comprehensive approaches to genomic analysis are available, testing was valued at $6500.

Based on this research, Regier estimates the demand for precision medicine is sensitive to price when first introduced and the evidence base is not established (1% increase in price resulted in >1% change in demand). Price becomes less sensitive as the evidence base becomes established (1% increase in price resulted in <0.1% change in demand). This research can be used to guide the value of precision medicine healthcare in Canada, particularly as it pertains to the price at which genomic testing is acceptable given expected health and non-health outcomes.