At the next PrivacyLive Forum, Dr Andelka Phillips will discuss her ongoing research on the direct-to-consumer genetic testing (DTC) industry which has developed and grown rapidly in the last 20 years.
DTC has created a market for DNA tests as consumer services, bringing them outside the clinic and into the domestic space. Individuals can now be viewed as consumers, rather than patients and these services pose challenges for existing regulation.
Genetic data is sensitive data. It can serve as an unique identifier for individuals, it can be used to trace family members, and for a wide range of secondary research purposes, meaning that there are significant privacy risks to consider in this context. The DTC industry offers tests for diverse purposes. These range from tests for health conditions to the increasingly popular category of ancestry testing, as well as tests for genetic relatedness (most commonly paternity), as well as more dubious tests for child talent and ‘infidelity’ or matchmaking.
Dr Phillips' presentation will draw on her book, Buying Your Self on the Internet: Wrap Contracts and Personal Genomics, which will be published in July by Edinburgh University Press as part of their Future Law series. She will give an introduction to the DTC industry and the issues these services raise for law and society more generally. It will include an overview of the variety of tests available, discussion of the contracts used by DTC companies, as well as the privacy issues these services raise. Dr Phillips is a Senior Lecturer at the University of Waikato Te Piringa Faculty of Law and a Research Associate with the University of Oxford's Centre for Health, Law and Emerging Technologies (HeLEX).