Machine Learning for Personalized Medicine

The Law and Ethics of Data

by Jonathan Price

The recent rapid developments in machine learning and other information technology have thrown up a new set of ethical issues, particularly in relation to the personal integrity and autonomy of data subjects. This is particularly acute in the field of personalized medicine where the technology is deployed to achieve the most intimate of insights and inferences, sometimes from seemingly innocuous primary information. The wider context for these developments is the rapid advancement in recent decades of what has come to be known as ‘big data’. For present purposes ‘big data’ can be taken to describe the current emerging informational paradigm, defined by massive and mass-participatory data sets, highly sophisticated statistical analyses and mathematical modelling, and enormous computational power.

The normative frameworks – both ethical and legal – in which these developments are taking place are adapting accordingly, albeit so far at a slower pace than the technology itself. From a legal point of view this adaptation is manifested in the emergence of the law of data protection, which in the UK has been two-pronged: (i) the judge-initiated new tort of misuse of private information; and (ii) the increasingly robust set of data protection statutes, the latest of which will be the forthcoming EU General Data Protection Regulation which will provide (it is anticipated) the most comprehensive set of standards and protections in the field, and which is designed to redress some of the perceived imbalance between the data industry on the one hand and data subjects on the other.

I will sketch out some of the ethical issues, describe the history and medium-term future of the law, and invite some dialogue from delegates and other speakers.

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