A Content Analysis of Genetic Testing Messages in the Mass Media

Theoretical Background and research questions/hypothesis:  Recent technological advances have led to increased access and availability of genome sequencing services to consumers. Little is known about the rapidly evolving area of consumer genomic information services, or “direct-to-consumer” (DTC) genetic testing. Because the public will increasingly receive information about genetic testing and genome scans without going through a healthcare provider, it is important to know what information is available about these services and what is being communicated more broadly. With the increasing availability of commercially-driven information from the providers of DTC testing, the Trans-NIH Communications Group on Genetics and Common Diseases contracted AED to conduct a media scan to identify the main messages around genetic testing being communicated to the public. AED conducted a three-part needs assessment evaluation looking at the topic of DTC genetic testing that included a literature review, portfolio review, and a media scan analysis. The media analysis, focused on here, was conducted to look at messages in published media on genetic testing and genome scans that are available and being marketed directly to consumers.

Methods:  The focus of the content analysis was on what messages were directed to the public around genetic testing in general and DTC genetic testing specifically, and how these were framed during a one-year period of interest (09/2007-09/2008). Searches were conducted through LexisNexis for articles, video, and media transcripts related to the topic of human genetic testing, excluding genetic testing for forensic evidence. 283 articles were coded for the SPSS-based analysis.

Results:  The analysis showed that the messages circulating focused on health topics and disease risk; the most common reason mentioned for getting a genetic test being assessing cancer risk (42%). Messages circulating framed genetic testing positively, with main ideas focusing on the benefits of genetic testing (44%) and its availability for consumers (37%). Fewer articles focused on the dangers/risks associated with genetic testing (26%). The articles that covered DTC genetic testing focused on its availability to consumers (64%), benefits (51%) and dangers (46%). Furthermore, three-quarters of all articles mentioned at least one benefit to receiving a genetic test; 84% of articles speaking to DTC specifically. Fewer articles (47%) mentioned at least one barrier/concern. Half of all articles quoted or cited specific companies or company representatives in their discussions of genetic testing.

Conclusions:  The framing of DTC genetic testing typically portrayed in the media during the study period was far more positive than negative or balanced.  Benefits were stressed while risks were less frequently presented. Reporting tended to reflect the points of view of the service providers; spokespersons and sources of information tended to be companies offering genetic testing services.   

Implications for research and/or practice:  Findings from this content analysis demonstrate a need for clear, accessible, and unbiased information on issues related to DTC genetic testing. Themes from this study and previous research suggest that NIH has an opportunity to provide the public with guidance on this topic, and strengthen its presence in the media.