The Politicizing DNA project is dedicated to exploring the political, medical, and racial nuances of direct-to-consumer (DTC) genetic testing. Led by Hined Rafeh and a team of undergraduate researchers, it seeks to explore the second-life of genetic data after you submit your spit, illuminate the nebulous definitions of “genetic health risk,” and evaluate the scientific claims backing health, ancestry, and personality trait DNA tests.
Current Projects
Terms & Conditions: Data, Consent, and the Unintended Consequences of Direct-to-Consumer DNA Tests
This project focuses on the rights outlined in the Terms & Conditions of leading DTC genetic test companies. It will analyze the language used across organizations, pathways for revoking consent, and existing partnerships between DTC genetic test companies and pharmacogenetic companies as well as government agencies such as the FBI.
Risk & Innovation: An Interpretive Policy Analysis of DTC Genetic Health Test Regulation
This project will empirically evaluate the terminology used in governing the regulation of genetic health tests by the FDA. Specifically exploring 23andMe’s FDA-approved genetic risk tests, this interpretive policy analysis will probe how notions of risk, disease, and diagnosis inform emerging policies and regulatory practices.
Reviewing the Evidence: Analysis of the “Science” behind DTC Genetic Tests
This project delves into the ways in which DTC genetic test companies back their scientific claims and how these claims are presented to the public. By analyzing the physical artifacts and literature provided in a mail-order test, this project will result in an online archive of direct-to-consumer DNA tests represented by photographs and accompanying analysis, with specific regard to how scientific claims are being made and advertised.
Past Projects
Constructing Race: A Comparative Analysis of DTC Genetic Ancestry Tests
This project explored the construction of race by DTC genetic test companies through a comparative analysis of key words relating to race as they appeared on company websites. Its findings revealed pervasively ill-defined terminology and unfeasible promises of ancestry on these companies’ websites, as well as a near-ubiquitous aversion to using the term “race” despite a tendency to depict race as genetically innate. Some of these findings were presented at the Rensselaer Polytechnic Institute Undergraduate Research Symposium in 2018 by Hannah Lightner and Paloma Alonso.
Team
Hined Rafeh – Project Head
Hazelle Lerum – Undergraduate Researcher
Hannah Lightner – Undergraduate Researcher (Buffering)
Paloma Alonso – Undergraduate Researcher (Alum)
