Data for Sale: the ethics of sharing patient health data with commercial companies

background

Health data has never been more valuable. The data currently held by the UK’s National Health Service has been lauded as having the potential to ‘transform patient care’, with recent estimates placing its financial value to commercial companies at as much as £5 billion per year.

However, sharing patient health data with commercial companies is controversial and is supported by less than 12% of UK citizens, a number which has dropped precipitously in recent years. Nevertheless, the UK government has stated a commitment to sharing data with commercial companies.

The focus of this project is to explore a range of ethical issues around how we should value, control, limit, and manage access to patient health data (broadly construed). These issues include:

1)      Data access (What kinds of research institutions or companies should have access to patient health data, and under what conditions?)

2)      The benefits and burdens of data sharing (What are the benefits and burdens of licensing patient health data use and access, and for whom? Are they fairly allocated?)

3)      The Value of Data (How should we think about forms of valuing data as a way of controlling ownership and access?)

A Digital ‘Social Contract’ (Do citizens have an obligation to contribute to public goods (e.g., the health system) by sharing their data? Is the idea of a contract an appropriate model?)

RESEARCH EXPERIENCE, RESEARCH METHODS AND TRAINING

This project will combine theoretical research in moral philosophy, bioethics or empirical ethics. Candidates will build their analytical and critical thinking skills through regular meetings with supervisors, and participation in the activities of Oxford’s Ethox Centre/WEH (e.g. research seminars, workshops). Candidates will also acquire fundamental research skills (e.g., identifying a research question, developing an argument), and receive support in adapting their research into publications suitable for high-quality peer-reviewed journals. They will also receive professional mentorship (e.g., networking, building research collaborations, grant writing) and opportunities for career development (e.g., presenting their work at conferences). 

FIELD WORK, SECONDMENTS, INDUSTRY PLACEMENTS AND TRAINING 

The UK’s National Consortium for Intelligent Medical Imaging (NCIMI), based in Oxford’s Big Data Institute, includes several companies using patient health data to develop cutting-edge artificial intelligence technologies. There may be opportunities for collaboration with members of NCIMI. 

Prospective candidate

This project is well-suited to any candidates with an interest in medical ethics, particularly the future application of ‘big data’ and technology in medicine. Candidates with a background in philosophy, social sciences, law, or medicine are encouraged to apply, whether they are wishing to pursue a career in academia or industry, or if they are a professional looking to build their skills and knowledge-base in an emerging field with enormous practical ramifications