Data and Information
Growth in the scale and scope of the collection and use of data and information has important implications for understandings of confidentiality, privacy, and conceptions of the ‘public interest’ and its appropriate limits. Question arise both about the ethics of the uses of data and about the implications of new forms of data use for understandings of these key ethical concepts. It is likely that notwithstanding the risks, the benefits - for individuals and populations - of sharing and analysis of large amounts of personal data will come to be judged too important to forego. It will increasingly be seen to be in our public and individual interest for such sharing to take place. In this context, there is an urgent need to work out ways of thinking about the ethics of a less private world.
The concepts of valid consent and autonomy have historically formed the cornerstone of Century thinking about ethics in research and medical practice. Whilst these will remain important, developments in the collection, storage, and uses of data on an unprecedented scale raise important new questions not only about what model of consent (if any) is most suited to uses of data but also about how consent, autonomy, control and their limits should be conceptualised.
The uses of data also raise important questions about responsibility, moral agency and culpability. Important moral questions are posed by the claimed predictive powers of data science. Current examples include ‘predictive policing’ but could potentially include much more controversial uses of data and biomedicine for the prediction and prevention of crime. How should the relationships between culpability, responsibility and prediction be understood?
Important new ethical questions are also posed about the responsibilities, duties and accountability of those individuals and institutions who store, quality control and manage data. Some of these questions concern justice and the uses and misuses of information: The storage and use of data present important questions about the equitable uses of such data. How should such data be used in the public interest? Justice questions also arise in relation to the ways in which and reasons such information is gathered and the relationships between this and, for example, questions of responsibility for health. There may for example, be many situations in which the use of wearable devices – during pregnancy, as a condition for surgery, or for access to state benefits, or health insurance – raises important questions not only about privacy but also about justice, equity and responsibility.