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

The Nuffield Council on Bioethics has published its report on The collection, linking and use of data in biomedical research and health care: ethical issues.

We are generating more data about people’s health and biology, from more sources, than ever before including GP records, hospital notes, laboratory tests, clinical trials, monitoring devices and health apps.

Advances in information technology and data science mean that it is becoming easier, cheaper and more valuable to gather, transfer, link, store and analyse these data. This offers significant opportunities to generate new knowledge, improve medical practice, increase service efficiency and drive innovation.

The Nuffield Council on Bioethics’ report looks at the ethics of data use by considering the relationship between privacy and public interest, and how developments in data science and computing have put significant pressure on conventional approaches to information governance, including the approach of seeking consent or anonymising data for use in research.

More needs to be done to ensure that respect for participants and the protection of their data is at the centre of any initiative, through participation and accountability, backed up by good governance, and criminal penalties for the misuse of data. To marginalise individuals who provide data means risking the trust of current and future generations, exposing people to unacceptable risks, and ultimately missing out on the benefits of research.

The 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, such as a principal investigator in a research project, lead policy official or commissioner of services.

If you would like to receive a printed copy of the report, please email bioethics@nuffieldbioethics.org (reports are free to order on or before 10 February 2015)

To view it online or for further details go here.

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