Towards a New Privacy

This chapter considers the legacy of respect for individual autonomy and ‘informed consent’ in health research. The primacy of informed consent as a safeguard has led to a systemic regulatory tendency to conceive of and protect privacy as an individual rather than a collective concern. This has limited any regulatory ability to grasp broader social concerns with the use and disclosure of data gathered and generated by health research. Any systemic failure to recognise collective interests in data, and the public interest in (non-personal) data protection, has profound implications for an information age. The chapter reflects on the value of re-negotiating the interests and expectations protected by health research regulation. It recognises the significance of Graeme Laurie’s preferred conception of privacy to enabling such negotiation, and the value of stewardship in establishing normative expectations free of historical encumbrance. Laurie’s conceptualisation of ‘privacy as separateness’, when placed alongside the idea of stewardship, may allow us to rebalance respect to encompass collective interests as fundamental to self-determination and mutual respect.