The Centre for Health, Law and Emerging Technologies (HeLEX)
We talk to Dr Harriet Teare, a researcher at the Centre for Health, Law and Emerging Technologies (HeLEX Centre) in the Nuffield Department of Population Health. The HeLEX Centre specialises in investigating the relationships between law, ethics and practice in the area of emerging technologies in health.
Tell us about the work of the HeLEX Centre
At the HeLEX Centre, we are interested in developing best practice in areas of cutting-edge science where new technologies are having a significant impact. We carry out research to understand how the law and governance mechanisms need to be adapted and improved as new technologies come on line, and new ethical, social, legal and policy issues come into play. Our key areas are personalised medicine, patient engagement, data sharing, big data approaches and translational research. For example with the increasing emphasis on genome data and the collection of data from a variety of sources, how do we ensure that patients and research participants are clearly aware of how their data are being used? Can we introduce new tools (for example dynamic consent approaches) to support involvement in research, and to allow people to have greater control over their data?
What other questions are You trying to address in your research?
How do we protect the privacy rights of individuals, families and indigenous groups in genetic information? How can we regulate the use of global big data approaches by commercial companies and ensure that the public has trust in oversight systems? What is the nature of legal responsibilities and obligations of clinicians and researchers as samples and data are reconfigured along the translational research pathway? Despite our intuitive responses that samples of DNA belong to the donor, who are the legal owners of samples and data used for research purposes? How might intellectual property rights in new technologies be apportioned to meet the health needs of a growing global population?
We are also exploring challenges relating to cyber-security, and the risk associated with sharing sensitive health data digitally, such as in the development of a learning healthcare system that incorporates Next Generation Sequencing and challenges the boundaries between the clinic and research. We carry out legal analysis to understand how changes in law might influence medical research – for example the potential implications of the new European General Data Protection Regulations.
Why Do you think this research Matters so much?
New technologies in healthcare throw up all sorts of ethical, legal and policy issues, and it is vital that these are considered in real-time, to ensure that patients and participants are supported, and also that research can progress and be delivered to the clinic. Across the centre we work alongside researchers and clinicians on specific projects to provide advice and guidance, while applying this experience to further our own research, and to guide the development of the law and policy. We work closely with patients and research participants to capture their views, and develop solutions that are appropriate for researchers and the intended users.
Your research crosses many disciplines, so I expect the team's experiences and backgrounds are quite varied too.
Yes. We’re very much a multidisciplinary team, with an assortment of previous experience. Law is obviously a significant focus, so we have several academic lawyers (including our Director, Professor Jane Kaye), and also social scientists with qualitative and quantitative research expertise, sociologists with specific STS interests and researchers experienced in policy design. Several of the team originally trained in the lab, which is particularly helpful when working with researchers and clinicians in areas of new technology.
And what about you Harriet? How did you get to where you are today?
I originally trained as a chemist, including completing a DPhil ‘down the hill’ in organic chemistry. I then moved to science policy, first joining the Royal Society of Chemistry and then becoming a policy advisor for Cancer Research UK. I got embroiled in policy issues relating to the health of British research, lobbying the Government to support the environment for medical research (including challenging their plans to restrict non-EU migration!). CR-UK policy development is heavily embedded in the evidence produced by their researchers, and I realised I wanted to get back to the evidence-gathering side of things, so joined HeLEX to look at how we can develop supportive governance tools, and prepare for future healthcare and research needs.
Are there any collaborations or partnerships you’d like to pursue with colleagues in Oxford?
One of the major projects I currently work on is called ‘dynamic consent’ – an approach that allows patients and research participants to have greater control over how their samples and data are used, and to engage with their clinical and research teams more directly. We are very keen to work with clinicians, researchers, software developers and cyber-security experts to develop our software. It needs to integrate with health IT systems already in place across the university and hospitals to enable secure and accountable data-sharing – if anyone is at all interested, please get in touch!