Consumers’ Use of Web-Based Information and Their Decisions About Multiplex Genetic Susceptibility Testing

Abstract

BackgroundFew data exist to inform concerns raised by online direct-to-consumer marketing of genetic susceptibility tests, such as those offered by commercial entities like 23andme, Navigenics, and DNA Direct. The Multiplex Initiative, a population-based study of healthy adults, provides the first opportunity to evaluate how use of a Web-based decision tool that conveyed information about a genetic susceptibility test influenced individuals’ test decisions.ObjectiveTo inform the ongoing debate over whether individuals offered genetic susceptibility testing without the involvement of a health care provider (eg, through direct-to-consumer testing) can make informed decisions about testing when guided by online decision aids.MethodsParticipants were 526 members of a large health maintenance organization aged 25 to 40 years old who visited a study website. Multivariate logistic regression models were tested to examine the association of website usage with downstream test decisions.ResultsParticipants viewed an average of 2.9 of the 4 pages introducing the multiplex test, 2.2 of the 8 pages describing the health conditions, and 3.2 of the 15 pages describing the genes. For each page viewed, participants were more likely to describe their decision-making as easy (odds ratio [OR] 1.04, 95% confidence interval [CI] 1.01-1.07) and to decide to be tested (OR 1.08, 95% CI 1.05-1.11).ConclusionsHealthy adults in this study perceived Web-based genomic information presented using evidence-based communications approaches to be helpful in supporting both decisions to test and not to test. Continued research is needed to ensure that these results generalize to target groups with lower literacy and less Internet savvy.

Awareness and Uptake of Direct-to-Consumer Genetic Testing Among Cancer Cases, Their Relatives, and Controls: The Northwest Cancer Genetics Network

“…Additionally, participants with the strongest family histories of cancer were more aware of DTC genetic testing compared to those without a family history of cancer, even after adjusting for participant type. Higher educational attainment was also associated with awareness of DTC genetic testing, echoing findings of the Multiplex Initiative (Kaphingst et al, 2010).…”

“…The interest in testing in the NWCGN sample is similar to the findings from the Multiplex Initiative, in which 11% of study participants ultimately decided to undergo multiplex genetic testing (Kaphingst et al, 2010). Additionally, although study participants who were recruited as cancer cases and participants who self-referred to the study were more aware of DTC genetic testing, neither they nor relatives of the cancer cases were more interested in obtaining testing compared to controls.…”

“…McGuire et al (2009) found that Facebook users indeed reported higher awareness of DTC genetic testing than was found in national surveys, yet reported use was still fairly low (47% and 6%, respectively). Additionally, the Multiplex Initiative was conducted among a sample of members of the Henry Ford Health System in Detroit, Michigan (Kaphingst et al, 2010). Study participants were offered a multiplex genetic test-similar to those offered through DTC genetic testing companies-that tested for the risk alleles of 15 genetic markers previously associated with eight common chronic diseases.…”

Genome-Based Health Literacy: A New Challenge for Public Health Genomics

“…A recent study demonstrated that healthy adults perceived evidence-based genomic information and communication approaches to be helpful for both decisions to test and decisions not to test. However, research is essential to ensure that these results are generalized to target groups that have lower literacy and are less Internet savvy [21]. It will be important to avoid the technical jargon with which genomics is heavily loaded.…”

Parents' Attitudes Toward Pediatric Genetic Testing for Common Disease Risk

“…At the Web site, volunteers could review 4 information modules about the "multiplex genetic susceptibility test" (1. 20 The test included 15 polymorphisms associated with increased risk for 8 common health conditions (colon, skin, and lung cancer; heart disease; osteoporosis; high blood pressure; high cholesterol; and type 2 diabetes) 21 ; testing was performed by 2 independent laboratories (at Johns Hopkins University and a private vendor). The final module offered participants the test.…”