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.
The report makes a number of recommendations to the UK Government, Department of Health, Independent Information Governance Oversight Panel (IIGOP) and the Health Research Authority (HRA), including:
- Public and private research funders and the Department of Health should ensure there is continued research into the potential harms arising from abuses of data, and should remain vigilant to any new harms that may emerge.
- The IIGOP and HRA should maintain maps of UK health and research data flows, and monitor and evaluate the hazards and potential benefits of new and existing policies, standards, or laws governing the use of health data.
- The UK Government should ensure that privacy breaches involving individual data are reported in a timely and appropriate fashion to the individual(s) affected.
- The UK Government should introduce robust penalties, including imprisonment, for the deliberate misuse of data, whether or not it results in demonstrable harm to individuals.