The direct-to-consumer (DTC) DNA test market has exploded in recent years as gene sequencing has become cheaper, and demand for ancestry-based genomic testing & medical health testing has increased as consumers have become (arguably) increasingly gene-literate. However, the policy surrounding these products has a long and winding history, as well as conditions surrounding the sharing and use of DNA data for research and commercial means.
Politicizing DNA, the Tactical Humanities Lab project led by Hined Rafeh, will explore the nuances of DTC genetic test regulation and its categorization as a medical device. It will also explore the recent FDA-approval of popular test company, 23andMe, in its endeavors to distribute tests that can identify pathogenic alleles with the intent of identifying genetic disease risk–think BRCA2, the widely recognized gene that is responsible for some forms of breast cancer.
Major questions guiding this research include: What regulatory standards exist for DTC genetic tests, and how do these standards change the way genetic results are represented? How does the gene become a tool to categorize ethnicity, disease and other identities? How is genetic health risk defined by government agencies and medical institutions, and how are these definitions communicated to the public?
Additionally, this project will explore the data paths that DNA follows after you spit: where does your biological information go, and who gets to use it? What pathways exist for revoking consent, and who can be harmed by the sharing of genetic information?
Politicizing DNA seeks to empirically explore the language around direct-to-consumer genetic test policy, including politically-salient terms such as “genetic risk” and “medical device.” This will be accomplished by policy analysis, website analysis, and analysis of the actual materials that are shipped with a genetic test. We intend to accomplish this by focusing on several of the biggest DTC genetic test companies, such as 23andMe, Ancestry.com, and FamilyTreeDNA.
Previous research under the Politicizing DNA project included an analysis of race as presented by DTC genetic test companies. The findings, spearheaded by undergraduate researchers Paloma Alonso and Hannah Lightner, uncovered ill-defined terminology and unfeasible promises of ancestry on these companies’ websites. For example, instead of using race, the three genetic companies used the terms “ethnic groups and tribes,” “populations,” and “ethnic populations.” Very few companies addressed the reality of the social construction of race, instead presenting a biologically essential view of race and genetics.
Going forward, Hazelle Lerum and Hined Rafeh will continue this research with a bigger focus on the policy and regulation of DTC genetic tests themselves and the data gathered by DTC genetic companies. This research will trouble the uncertainties surrounding popular conceptions of DNA and what it means for us as a society, and identify the groups that are most vulnerable to the use and abuse of corporatized genetic health testing.
Hined Rafeh is a HASS fellow and PhD student in the RPI STS program, and her research explores genetic testing, technoidentities and critical scientific engagement.
Hazelle Lerum is an undergraduate student pursuing a B.S. in Science, Technology, & Society. Her research explores the politics of direct-to-consumer DNA tests, the dangers of toxic sex toy materials, and the intersection of art and environmental justice in citizen science. She is a founding editor of the self-publishing collective Pale Mountain Press, and enjoys writing in her free time.