The use of new technologies that greatly facilitate the collection, storing and linking of data has become increasingly important to biomedical research and healthcare, as well as to many of the conveniences of contemporary life. However, new uses of health and biological data relating to distinguishable individuals also holds potentially far-reaching implications for privacy, interpersonal relationships and the relations between individuals and society.
This Working Party will explore the ethical issues raised by developments in the collection, linking, use and exploitation of human biological and health data. Questions to be addressed might include:
- How do developments in the collection and storage of biological and health data, and their linking with other data sources (including social and administrative data) affect the scope of benefits, harms and uncertainties facing individuals?
- How might these developments affect the understanding of privacy in relation to biological and health data? What do they mean for the protection of confidentiality and anonymity or the exercise of autonomy?
- How might they affect the balance between private and public interests in biological and health data? What part might be played by values of altruism, trust, reciprocity and solidarity?
- What implications do they have for the governance of biological and health data, biobanks and data repositories?