Terms and Conditions: Data, Consent, and the Unintended Consequences of Direct-to-Consumer DNA Tests

• In Event: Innovation, Biocapital and the Making of Post-Genomic Medicine - I

Abstract

What are the consequences of the commodification of DNA? Where does DNA [the data] go after consumer submission? The at-home genetic test industry has exploded into prominence in the last few years, provoking significant public dialogue regarding the potential risks and unintended consequences of the genetic data being collected and researched. This research maps out what happens to the data collected from direct-to-consumer (DTC) genetic health tests. By conducting analysis on the legal policies and terms and conditions of DTC genetic companies, this work will examine the ways that these companies handle consumers’ data. Are consumers’ wishes about privacy or supporting research protected or violated? What systems are in place to protect consumers from the misuse of their data? This research will address genetic health policy as well as outmoded genetic metaphors, genealogical blind spots, and regulatory shortcomings with the recent development of 23andMe’s FDA-approved genetic health risk tests. Additionally, this research will inform future critiques of adjacent technology, such as diet/productivity-oriented DNA tests or mobile apps used to interpret genetic test data, while taking into account arguments surrounding personalized medicine. Altogether, this project aims to contribute to the dialogue surrounding the use and abuse of biological matter/samples, with special attention to the specific groups that are most vulnerable to misuse.

Authors

• Hazelle Lerum, Rensselaer Polytechnic Institute

• Hined A Rafeh, Rensselaer Polytechnic Institute