Sequencing Profits, Race And Identity: An Analysis Of Direct-To-Consumer Genetic Testing Of Ancestry

• In Event: Racialised Bodies and Knowledges

Abstract

In 2013, the Food and Drug Administration sent a warning letter to the genetic testing company 23andMe, demanding that they cease marketing for the unauthorized Salvia Collection Kit and Personal Genome Service. Following the suspension of their health-related genetic tests, 23andMe was the spotlight of many conversations of medicine, bioethics, and politics. However, this paper focuses on the rise of the ancestry testing that coincidentally became the company’s main product. This work explores how the commercialization of direct-to-consumer (DTC) genetic testing for ancestry and ethnicity. In the databases of many DTC genetic testing companies, ethnic groups are categorized as ‘reference populations’, ‘population clusters’ and ‘founder populations’. What role do these classifications play in the future of race and identity politics? In studies of race and science, we have seen how certain ethnic groups use and respond to DTC genetic tests in regard to identity (Tallbear, 2013; Nelson 2016), and this work aims to further this ongoing conversation. This research investigates the ways in which genetic ancestry testing services, like those offered by “23andMe,” are shaping and are being shaped by members of ethnic populations targeted by DTC companies, whose epistemic frameworks of race, ancestry, and identity are radically different from those that underpin the racial categories in genetic testing. This work will analyze how seemingly objective scientific data and practices can have profound political and social effects on current and future conceptions of race and identity.

Author

• Hined A Rafeh, Rensselaer Polytechnic Institute