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Can we safeguard our privacy while using health data for better medical care?

It’s clear that data-driven technology is transforming medical knowledge and practice.

Innovation is taking place on many levels, for example, devices such as fitbits are helping to monitor heart rates, blood sugar levels and sleep cycles, and IBM’s A.I. system, Watson, is giving scientists insight into how genes affect our health.
Data is also being analysed to generate new medical findings, for example, scientists at The Alan Turing Institute, are collaborating with the Cystic Fibrosis Trust, to investigate how to apply machine learning techniques to their data to help improve healthcare for people living with the life-limiting condition.

However, despite the benefits for medical research,  incidents like the care.data breach and subsequent fears around protecting personal information mean there is serious public concern around how to share health data safely.

In a special Date Debate event, a collaboration between The Alan Turing Institute, The British Library and the Economic and Social Research Council, we ask a panel of experts:

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How can we balance the potential benefits of using personal data for healthcare research, with the ethical dilemma they provoke?

Should we allow companies to use medical data for technological developments and interventions that may improve our lifestyles, or does this contravene our privacy rights?

How can we ensure a future in which health care data is used in a way which ensures the public trust?

Can we safeguard our privacy and regulate the use of health data while making medical practice and discovery more effective through technology developments?

Speakers include:

  • Luciano Floridi, Turing Faculty Fellow and Professor of Philosophy and Ethics of Information at the Oxford Internet Institute. His research areas are the philosophy of Information, information and computer ethics, and the philosophy of technology.
  • Sabina Leonelli, Co-Director of the Exeter Centre for the Study of the Life Sciences (Egenis), where she leads the Data Studies research strand. Currently, Sabina focuses on the philosophy, history and sociology of data-intensive science, especially the research processes, scientific outputs and social embedding of Open Science, Open Data and Big Data.
  • Natalie Banner, Policy Adviser at Wellcome Trust. Her focus is on how to get the best use and value from health and genetic data while ensuring it is well protected, responsibly managed and ethically used, both in the UK and internationally.

The panel will be chaired by writer and broadcaster Timandra Harkness.
Timandra presents BBC Radio 4 series, FutureProofing and has presented the documentaries, Data, Data Everywhere, Personality Politics & The Singularity.
Her recent book Big Data: Does Size Matter? has been published by Bloomsbury Sigma in June 2016. She is Visiting Fellow in Big Data, Information Rights and Public Engagement within the Centre for Information Rights at the University of Winchester.

Register here to join the discussion.

Data Debates are a collaboration between The Alan Turing Institute, The British Library and Economic and Social Research Council aiming to stimulate discussion on issues surrounding big data, its potential uses, and its implications for society.

For more information or media enquiries contact:
Angelo Napolano, Communications and Marketing Manager, The Alan Turing Institute
anapolano@turing.ac.uk / 0203 862 3369