Report3rd February 2015

The collection, linking and use of data in biomedical research and health care: ethical issues

This report looks at the ethical issues raised by data use in biomedical research and health care, and sets out key ethical principles for the design and governance of data initiatives.

Biological and health dataGenomicsPersonalised healthcare

Report (PDF)Guide to the report (PDF)Key recommendations (PDF)

We are generating more data about people’s health and biology than ever before. Combined with advances in IT and data science, this offers significant opportunities to generate new knowledge and improve medical practice; but it also raises concerns about individuals’ privacy.

This report sets out key ethical principles for the design and governance of data initiatives, and identifies examples of good practice relevant to anyone approaching a data initiative.

The report calls for greater transparency about how people’s data are used, and recommends the introduction of criminal penalties in the UK for the misuse of data.