There has never been such a high demand for our personal data, such that it is often said that individuals are the product, not just the client. Using the donation of general personal data and health data in example scenarios, areas such as: the unknown element in data content; trust and trustworthiness in data custodians; and meaningful public engagement, will be explored. The alternative is that data are not used, with the corresponding harms this may bring. Ironically, this is not an unusual situation in settings where having adequate data on which to base decisions is paramount for individual well-being. By drawing upon an international case study of health data non-use, it will be shown that this is a complex, global problem with multiple explanations resulting in untold harms to individuals and society. But there are many scenarios where our personal data are in demand, not just for public good. As individuals we need to consider the bioethical balance between individual autonomy, personal exploitation and social responsibility in making our donation decisions. Ultimately, the question is whether we, as individuals and society, want to ‘gift’ our data in some circumstances and grant its use under licence in others; and whether we can really make informed choices with the panoply of issues that may influence our decisions.
Kerina Jones is an Associate Professor of Health Informatics at Swansea University, where she is the academic lead for Information Governance and Public Engagement to ensure data protection and maximise socially-acceptable data utility across the various Swansea University-based data intensive/linkage initiatives, including: the SAIL Databank, Administrative Data Research Centre Wales, Farr@CIPHER and the recently awarded HDRUK collaboration between Swansea University and Queen’s University Belfast. Kerina leads the active Innovative Governance working group of the Farr Institute, which works collaboratively to advise and influence the developing data governance landscape to promote the safe reuse of data. She leads an IG research programme including work to inform cross-centre research and how emerging data types, such as genetic data, can be used in conjunction with health record data. This includes a programme of public engagement and Kerina enjoys working with the public on the use of anonymised data for research.