Genetic testing for breast and ovarian cancer susceptibility: evaluating direct-to-consumer marketing—Atlanta, Denver, Raleigh-Durham, and Seattle, 2003

Morbidity and Mortality Weekly Report, July 16, 2004

Breast and ovarian cancer are the second and fifth leading causes of cancer death, respectively, among women in the United States (1). One in eight women will have breast cancer during their lifetimes, and one in 70 will have ovarian cancer. Mutations in two genes, BRCA1 and BRCA2 (BRCA1/2), are associated with predisposition for inherited breast and ovarian cancer and are identified in 5%-10% of women with breast or ovarian cancer (BOC) (2). Since 1996, genetic testing for these mutations has been available clinically (3); however, population-based screening is not recommended because of the complexity of test interpretation and limited data on clinical validity and utility (1,4-6). Despite the test's limited applicability in the general population, the U.S. provider of clinical BRCA1/2 testing (Myriad Genetic Laboratories, Inc., Salt Lake City, Utah) conducted a pilot direct-to-consumer (DTC) marketing campaign in two cities (Atlanta, Georgia, and Denver, Colorado) during September 2002-February 2003. Although DTC advertisements have been used to raise consumer awareness about pharmaceuticals (7), this was the first time an established genetic test was marketed to the public. To assess the impact of the campaign on consumer behaviors and health-care provider practices, CDC and the respective state health departments for the pilot cities and two comparison cities (Raleigh-Durham, North Carolina, and Seattle, Washington) surveyed consumers and providers. This report summarizes results of those surveys, which indicated that consumer and provider awareness of BRCA1/2 testing increased in the pilot cities and that providers in these cities perceived an impact on their practice (e.g., more questions asked about testing, more BRCA1/2 tests requested, and more tests ordered). However, in all four cities, providers often lacked knowledge to advise patients about inherited BOC and testing. These findings underscore the need for evidence-based recommendations on appropriate use of genetic tests and education of providers and the public to achieve maximum individual and public health benefit from genetic testing.

Women aged 25-54 years with personal or family histories of BOC and their health-care providers were target audiences of the DTC campaign. The campaign consisted of television, radio, and print advertising to raise awareness about BRCA1/2 testing and to motivate women to ask their providers how genetic testing might help assess BOC risk and guide them to effective medical management options. Providers received precampaign information and patient support materials (8).

During April 21--May 20, 2003, a 51-question consumer telephone survey was conducted by using randomly generated household telephone numbers. Approximately 1,600 women were targeted for participation. Survey questions addressed family history, campaign awareness, interest in BRCA1/2 testing, cancer concerns, and interactions with health-care providers, family members, and friends. On May 1, 2003, providers were mailed a 35-question survey and a monetary incentive. Questions surveyed knowledge of inherited BRCA1/2 mutations, campaign awareness, and perceived changes in practice subsequent to the campaign. Approximately 1,600 physicians were selected randomly from the American Medical Association master list to be proportionally representative of four specialties (i.e., family practice, internal medicine, obstetrics/gynecology, and ontology).

Consumer Survey

A total of 1,635 women completed the survey (participation rate: 45%); the majority (79%) were non-Hispanic white, with a median age of 40 years and more than a high school education (75%). Thirteen percent had a family history of BOC in a first-degree relative (e.g., parent or sibling). In the pilot cities, consumers were substantially more likely than those in the comparison cities to have heard of the test and to have seen a television, radio, or magazine advertisement; however, perceived knowledge about testing did not differ between consumers in the pilot and comparison cities (Table 1). No differences were observed between pilot and comparison cities in the percentage of women who reported talking to anyone about the test (Table 1) or in the level of concern about their risk for BOC. Among women who had heard of the test, interest in testing did not vary by city (Table 1). Among women who had heard of and were interested in the test, 20% had a first-degree relative with BOC compared with 17% of women who had heard of the test but were not interested.

Provider Survey

A total of 1,054 providers completed the survey (participation rate: 66%); the majority (66%) were male, had been in practice for > 10 years (62%), and evaluated <100 patients per week (65%). In the pilot cities, providers were more likely than those in comparison cities to report that they and their patients saw or heard an advertisement about genetic testing for BOC (Table 2). When asked to compare the previous 6 months with the same period 1 year before, more providers in the pilot cities than in comparison cities reported an increase in the number of patients who had asked questions about testing, asked for genetic counseling referrals to consider testing, and requested testing. Providers in the pilot cities also reported ordering more tests but not more referrals to genetics or oncology centers (Table 2).