Date of Award
August 2020
Document Type
Thesis
Degree Name
Master of Arts (MA)
Department
Communication Studies
Committee Member
Kristen Okamoto
Committee Member
James Gilmore
Committee Member
Travers Scott
Abstract
More than 26 million individuals have submitted to direct-to-consumer genetic testing (DTCGT) services since the personal genomics industry gained traction in the late 2010s. Private firms AncestryDNA and 23andMe dominate the market, and as a result, hold ownership of some of the largest collections of human genetic data in the world. As a novel technology that analyzes consumer disease risk or genetic genealogy, DTCGT has emerged alongside a number of ethical, legal, and social implications that require scholarly investigation. This study places a critical eye on AncestryDNA and 23andMe to examine how DTCGT is contextualized in the news media. Using a Foucauldian discourse analysis, 50 articles from The New York Times, The Wall Street Journal, and USA Today were analyzed to capture present discourses and ethical critiques of DTCGT. Results of this study cast the genetic testing consumer as self-managing, datafied, and valuable. Consumers’ quests to develop their genetic knowledge form the foundation of a bioeconomy that private firms and government entities use to advance research and innovation while implicitly reiterating neoliberal notions of autonomy, productivity, control, and individual responsibility. Issues of third-party sharing of genetic data, informed consent, risks and uncertainties about testing, genetic privacy, and more are discussed as they are presented in the news media. In light of these critiques, this analysis demonstrates a need for regulatory action and scholarly analysis on how DTCGT is contextualized as society becomes increasingly datafied and risk-aware.
Recommended Citation
Halusker, Hannah, ""The Unregulated Wild West": A Socio-Ethical Discourse Analysis of Direct-To-Consumer Genetic Testing" (2020). All Theses. 3406.
https://open.clemson.edu/all_theses/3406