| Speaker: | Andelka Phillips |
| Affiliation: | Te Piringa – Faculty of Law, University of Waikato |
| Date: | Wednesday 15th May (Trinity Term 2019) |
| Time: | 14:00 |
Dr Phillips will discuss her ongoing research on the direct-to-consumer genetic testing (DTC) industry, drawing upon her book, Buying Your Self on the Internet: Wrap Contracts and Personal Genomics, which will be published in June 2019 by Edinburgh University Press, as part of their Future Law series.
We have all grown accustomed to clicking ‘I Agree’ online, often without reading Terms and Conditions or Privacy Policies, but as more new services handling sensitive data are coming to market this lack of reading is problematic. The DTC industry has developed over the last two decades. It has created a market for DNA tests as consumer services, bringing them outside the clinic and into the domestic space. Individuals in this space can now be viewed as consumers, rather than patients and these services pose challenges for existing regulation. Genetic data is also sensitive data. It can serve as a unique identifier for individuals, it can also be used to trace family members, and it can be used for a wide range of secondary research purposes, meaning that there are significant privacy risks to consider in this context.
The 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.
This talk will provide an introduction to the DTC industry and the issues these services raise for law and society more generally. This 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.
The book uses the example of DTC genetic testing companies using wrap contracts as their dominant means of governance to show the challenges that disruptive technologies pose for societies and for regulation. The book:
Reviews 71 wrap contracts used by DTC companies providing health testing
Explores broader issues with online contracting
Sets an agenda for improving regulation and the online contracting environment
Find out more...
