Have you or anyone you know considered ordering a genetic test online? How many online contracts or privacy policies have you read? The personal genomics industry is growing rapidly, and together with other developments in consumer focussed healthcare it is challenging the way we access healthcare, but also our conceptions of our own identities.
Currently, the personal genomics industry is poorly regulated and if you are interested in purchasing a genetic test, you should read the fine print. As most people are not doing this, Dr Andelka M. Phillips has done this for you.
Dr Andelka Phillips is a senior lecturer at the University of Waikato’s Te Piringa – Faculty of Law and Research Associate at the HeLEX Centre, University of Oxford, and she has had a very busy first year at Waikato. Her research is centred in technology law and health law and she is particularly interested in how we interact with contracts online and the impact this has on our autonomy and decision making.
As an international expert on the personal genomics industry, she is regularly contacted by the media and in 2019, she has been interviewed by Marie Claire magazine in the UK, North and South magazine in New Zealand as well as Medium.
Dr Phillips is also regularly invited to speak on issues related to personal genomics. This year alone she has given invited seminars and lectures at the National University of Singapore, Oxford University, Lund University, Ghent University, Vanderbilt University, Houston University, and New York University. She was also an invited speaker for the Georgetown University workshop Direct-To-Consumer (DTC) Genetic Testing: What needs to be done to get this Business “Morally Right”? held in Washington, DC, and the Identity as Taonga conference held in Wellington, New Zealand.
As the personal genomics industry raises complex issues for both consumer protection and privacy law, Phillips also strives to make her work accessible to the public and has given a public lecture for the New Zealand Privacy Commissioner in June this year and also spoke at a public event in London, UK.
In the second half of 2019, she has seen two books to press. The first in July entitled Buying yourself on the Internet was published as the first volume in Edinburgh University Press’ Future Law Series. This book has also been selected to be included in Edinburgh Scholarship Online platform which makes her work available to a much wider readership via participating libraries worldwide. Readers are able to search for her book, read the full chapters online and be directed to where they can also purchase a copy. Those interested can find out more on the Edinburgh University Press blog.
Dr Phillips also wrote a chapter entitled ‘All Your Data Will Be Held Against You: Secondary Use of Data from Personal Genomics & Wearable Tech’ for the book Research Handbook On Law And Courts edited by Susan Sterett and Lee Demetrius Walker, which was published in October this year. This chapter explores the impact of contracts and privacy policies on the rights of individuals, as data from personal genomics services and wearable technology devices are beginning to be used as evidentiary sources in courts.
Dr Phillips’ second book is Philosophical Foundations of Medical Law (published on 21 November 2019) which is a volume in Oxford University Press’ Philosophical Foundations of Law series and also available on the Oxford University website. This book consists of 23 chapters written by different authors, with Dr Andelka Phillips being the lead editor of the book, author of one chapter as well as being a co-author of the Introduction.
“This book identifies key questions and issues underlying the philosophy of medical law, and provides a point of entry into cutting-edge research in the field. It includes contributions from leading legal, moral, and political philosophers and medical law specialists offering a range of perspectives on theoretical problems at the core of medical law. It also offers expert analysis of complex medical and ethical issues including the rise of personalized medicine, precision medicine, Big Data, and the Quantified Self movement, (including personal genomics), as well as other consumer focused services," says Dr Phillips. Find a free preview available here.
In the book, Dr Phillips authored chapter 22 titled The Age of Personalized Medicine-From Patients to Consumers: the Digital Environment, Clickwrap, Contracts, and Implications for Autonomy. It explores the question of how many online contracts one has entered into and how many of those contracts were actually read through.
The chapter also explores the impact that the designed environment of websites and electronic contracts have on the exercise of individual autonomy, in the context of the example of direct-to-consumer genetic tests (DTC). DTC tests for health purposes can be viewed as an example of Personalised Medicine, but as the mode of sale usually lacks the involvement of a physician or genetic counsellor and the industry is largely unregulated, companies often relying on their contracts and privacy policies to govern relationships with consumers. This chapter seeks to shed light on the impact that offering these services online and relying on electronic contracts, which people have grown accustomed to ignoring, has on the exercise of autonomy and an individual’s ability to make an informed choice in this context.