Buying Your Genetic Self Online
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Buying your Genetic Self Online
Dr Andelka M. Phillips
Senior Lecturer in Law, Science and Technology, TC Beirne School of Law, University of Queensland and Research Affiliate, Centre for Health, Law and Emerging Technologies (HeLEX), University of Oxford.
https://edinburghuniversitypress.com/book-buying-your-self-on-the-internet-hb.html and https://www.jstor.org/stable/10.3366/j.ctvnjbgvb
We are living in the age of Big Data and a world of ever increasing surveillance, where a wide range of data about individuals are being collected, shared, and linked with other datasets by an increasingly diverse range of entities. The amount of tracking to which the ordinary individual citizen is now subject is largely unprecedented and not always well understood by that individual. New products and services that often rely on new and emerging technologies are constantly coming to market, normally with very limited oversight. We are seeing a wide range of new consumer focussed healthcare services, including many innovations in the Quantified Self movement and the Internet of Things. The personal genomics industry (aka direct-to-consumer genetic testing (DTC), or commercial genomics) is one such example.
The DTC industry has taken genetic tests out of the medical clinic and into people’s homes, offering testing for a diverse range of purposes, including: health; ancestry; paternity and maternity; athletic ability; child talent; matchmaking; and infidelity. Such services are offered for sale typically through websites, where an individual can purchase a test and they will then be sent a sample collection kit. This kit normally requires the collection of a saliva sample or sometimes a cheek swab, which the individual collects and sends back to the company for processing. The company will then provide test results through a digital platform or email and may also provide other functions through their website, such as social networking. Social networking features of DTC companies often allow individuals to make connections with others. These often centre around connected people with others to whom they may be related. Companies are also often engaging in research utilising consumer data. Consequently, in the DTC context there is much scope for secondary use of data and also for data sharing with a wide range of entities.
Consumers encounter contracts and privacy policies on most websites they visit and very few consumers actually read these documents. This talk will provide an introduction to the world of personal genomics and the issues, which the industry raises for consumer protection law. This will include discussion of the industry’s use of contracts to govern their relationships with consumers and argue that a number of terms commonly included in these documents could be challenged on the grounds of unfairness. This talk will draw upon the book Buying Your Self on the Internet: Wrap Contracts and Personal Genomics, which was published by Edinburgh University Press in July 2019 as the first volume in their Future Law series. The paperback edition was published in May 2021.
The book and related papers are based on work, which began in 2011. This has involved the compilation of a database about the industry. This includes: information on the location of companies; the types of services they offered; screen shots, electronic contracts; and privacy policies, where these were publicly available. A version of the dataset has now been released and it is publicly available via Zenodo and my website.
 Andelka M. Phillips, ‘Buying Your Genetic Self Online: Pitfalls and Potential Reforms in DNA Testing’ (May/June 2019) IEEE Security and Privacy 77-81 doi:10.1109/MSEC.2019.2904128; Andelka M. Phillips, ‘Reading the Fine Print When Buying Your Genetic Self Online: Direct-to-Consumer Genetic Testing Terms and Conditions’ (2017) New Genetics and Society 36(3) 273-295 http://dx.doi.org/10.1080/14636778.2017.1352468; Andelka M Phillips, ‘Only a Click Away – DTC Genetics for Ancestry, Health, Love… and More: A View of the Business and Regulatory Landscape’ (2016) 8 Applied & Translational Genomics 16-22 <https://doi.org/10.1016/j.atg.2016.01.001>; and Andelka M Phillips, ‘Genomic Privacy and Direct-to-Consumer Genetics – Big Consumer Genetic Data – What’s in that Contract?’ (presented at GenoPri’15 (The 2nd Workshop on Genome Privacy and Security) published as part of IEEE Conference Proceedings 2015) <https://www.computer.org/csdl/proceedings/spw/2015/9933/00/9933a060.pdf>
 Please see Andelka M Phillips, ‘Data on Direct-to-Consumer Genetic Testing and DNA testing companies’ Version 1.3 (Open Access Dataset, Zenodo, February 2018) doi: 10.5281/zenodo.1175799 <https://zenodo.org/record/1183565#.WunK6y-ZNp8>