Proponents of DTC marketing and provision of genetic tests often assert the putative "right to information," which they argue promotes patient autonomy. DTC marketing may increase patients' feelings of empowerment to discuss their care with their physicians. Patients may also develop an increased awareness of the importance of family history, the relationship between risk and family history, and the role of genetics in disease, as well as a better understanding of the value of genetic counseling. While the issue of privacy is also emphasized in DTC marketing and testing claims, it may not be as salient after testing, given that those found to be positive will, for the most part, want their physician involved early in identifying measures to mitigate risk.
Research examining the impact of direct-to-consumer marketing of genetic tests
Marketing of DTC genetic tests includes diverse strategies for increasing awareness and market demand for genetic testing services by for-profit companies. There are two approaches to targeting consumers with information about DTC genetic tests. The first is called DTC advertising which promotes the availability of a genetic test to the public, but requires involvement of a health care provider to order the test and disseminate the results to the consumer. The second approach, direct-to-consumer genetic testing, is discussed below. While numerous position papers, review articles, and commentaries have been published, there are few empirical examples about the impact of DTC advertising of genetic tests on patients, providers, or the health care system. The most studied example to date is the Myriad Genetics campaign to increase awareness of BRCA1/2 mutation testing through multiple mass media outlets (print, radio, and television). In 2002, Myriad launched its first direct-to-consumer marketing campaign in the cities of Denver and Atlanta. The target audience for this campaign was the general population of women age 25-54 years. In May of 2002, Myriad began with educational outreach to providers in the two cities in anticipation of patient requests for information spurred by the DTC campaign that ran from September 2002 to February of 2003. The campaign included television, radio, and print advertisements that were expected to reach greater than 90% of the target audience, an average of 16 times during the 5-month period.[25,26] Subsequently, these DTC campaigns have been conducted in the Northeast, Texas, and Florida. These campaigns were immediately criticized for providing incomplete, manipulative information.[27,28]
Empirical research was conducted immediately following the 2002 campaign. A random digit dialing survey of 1,635 women in the campaign cities (Denver and Atlanta) and two control cities found increased levels of awareness of BRCA1/2 genetic testing in target cities. However, no significant differences were observed in perceived knowledge about testing, concern about breast cancer, or interest in testing. There was no evidence that knowledge was differentially increased in those women with strong family histories of breast cancer, who would most benefit from consideration of testing. No overall increase in anxiety or confusion about testing was reported, with 63% of women who reported exposure to the DTC advertisement reporting no anxiety at all and 76% reported no confusion. A smaller study of 315 women from the Denver area found that women at increased risk of breast cancer were more knowledgeable about BRCA testing and more likely to recall the advertisement. However, an equal number of high and low risk women felt they would benefit from genetic testing and were interested in testing. A consumer survey based on a cross-sectional, stratified, random sample of at-risk women explored the effects of socioeconomic status (SES) on women's reactions to a BRCA1/BRCA2 genetic testing DTC marketing campaign. The survey was conducted at two intervention sites (n = 811) and two control sites (n = 824), and knowledge of the genetic test, perceptions of personal risk, communications with others about the test, and interest in pursuing the test were evaluated. SES, as measured by income and education, had no differential effect on any of the outcome measures in women at the intervention sites and control sites. However, the study did report a consistent overall effect of SES on most variables measured, independent of the intervention site. For example, women of lower SES reported being less knowledgeable about genetics and risk, yet were more interested in genetic testing. These results suggest that SES could play a role in access to genetic services, how women understand their genetic risk for inherited breast and ovarian cancer susceptibility, and what they do about it.