The ethical and social implications of using patient data need to be carefully thought through. To ensure data is used in socially just and equitable ways, the right kinds of regulations and good governance need to be in place.

Where advances in data science have the power to create valuable insights into health, illness and treatments, it may be ethically the right thing to use patient data. But there are also some significant ethical and social questions about how this data should be used, managed and protected, especially where the technologies are rapidly developing at a pace that policy and regulation may not be able to keep up with.

    Data ethics

    Data ethics is becoming an increasingly important issue. In 2016, the House of Commons Science and Technology Committee recommended the creation of a Council of Data Science Ethics. A subsequent report by the Royal Society and British Academy also recommended a stewardship body for data, setting out high-level principles for data governance and a set of required functions. Following this:

    • The Government has announced a £9 million investment in a new Centre for Data Ethics and Innovation.
    • The Nuffield Foundation has opened the Ada Lovelace Institute to promote ‘ethical practice in the public interest’ concerning data.

    There are several resources to help find out more about data ethics, including videos from The Alan Turing Institute.

    As part of our future technologies workshop, Professor Mike Parker presented an overview of the ethical issues emerging from the use of data.

    How this relates to healthcare

    Discussions of data ethics have important implications for how data is used in healthcare and biomedical research, and how this is regulated.

    Here are some reports considering these issues:

    • Ethical, social, and political challenges of artificial intelligence in health (2018)

    A Wellcome Trust and Future Advocacy report exploring the ethical, social and political challenges resulting from current and prospective uses of AI in healthcare and biomedical research. 

    • Confronting Dr Robot: Creating a people-powered future for AI in health (2018)

    A NESTA report looking at developing principles around which AI should be applied to healthcare, and policy recommendations to implement these principles.

    • The collection, linking and use of data in biomedical research and healthcare: ethical issues (2015) 

    Nuffield Council on Bioethics report on the changes predicted to take place in the data landscape and the governance and ethical implications of uses of data.

    Data ethics in the news

    The use of AI and other digital technologies in health and research is highly topical and ongoing media coverage helps cast light on the concerns.

    Read Professor John Bell, author of the Life Sciences Industrial Strategy, on the need to ensure the value of patient data is preserved and channelled into benefits for patients and the NHS.

    Read our article discussing how to ensure patients don't lose out if there is a public backlash on AI. 

    See our news pages for our commentary on recent examples of data ethics issues in the media.