Cancer Genetics Risk Assessment and Counseling (PDQ®): Genetics - Health Professional Information [NCI] - The Option of Genetic Testing
Table 1. Clinical Utility of Genetic/Genomic Testsa continued...
In addition to the data from the Myriad campaign, one international study examined the impact of a DTC campaign for genetic testing by a group of researchers in partnership with a popular Polish women's magazine (Twoj Styl). Genetic testing was offered to 5,000 women through an announcement placed in Twoj Styl in October 2001. A total of 5,024 women who qualified received a free genetic test for three BRCA1 mutations that are common in Poland. Genetic counseling was offered only to women with a positive test or with a significant family history of breast or ovarian cancer. The great majority of women who took part in the program expressed a high degree of satisfaction, and after 1 year, approximately two-thirds of identified mutation carriers had complied with breast cancer screening recommendations. No follow-up with women who received a negative test result to assess understanding of their results was conducted nor was subsequent follow-up conducted regarding population screening recommendations.
Research examining DTC testing
DTC genetic testing is advertised directly to consumers, purchased directly by the consumer, and the results are delivered directly to the consumer without the involvement of the consumer's health care provider. Some might suggest that DTC genetic tests promise heightened privacy and the potential that individuals will be more informed and more able to take an active, decision-making role in their medical options.
DTC laboratories predominantly rely on Web material to disseminate test information to consumers. One study evaluated how using a Web-based decision tool that provided information about a multiplex genetic susceptibility test influenced participants' testing decisions. The Web-based tool was developed specifically for the study by an interdisciplinary research team and was designed using principles of health literacy, communication, and prior research. The tool implemented a layered menu approach that allowed participants to select the order and amount of content viewed. Participants included 526 members of a large Midwestern health maintenance organization ranging in age from 25 to 40 years with no evidence of any of the health conditions included in the test. Participants most frequently viewed the Web pages describing the test, testing procedures, and implications of the results and less frequently viewed the pages about specific health conditions or genes. Participants viewed an average of eight Web pages (mean 8.2, standard deviation 7.2, range 1–27), including an average of 2.9 of the 4 pages introducing the multiplex test, 2.2 of the 8 pages describing the health conditions on the test, and 3.2 of the 15 pages describing the genes, out of a possible 27 total pages. The number of Web pages viewed was significantly associated with ease of decision making (odds ratio, 1.04; 95% CI, 1.01–1.07).