National Privacy Perceptions: Stage One

The strategic objective in this stage involved the identification, analysis and comparison of different ethical, cultural, and social concepts of privacy as engaged by research using genetic data and bio-banks by describing areas of common understanding and recognising significant points of difference within both the conceptions themselves and their relationship with research. PRIVILEGED described the direction of the discussion and considered the possibilities and implications of a common core of ‘European’ values being recognised.

This stage consisted of three sub-objectives:

1. To establish a working definition of ‘genetic database’ and ‘bio-bank’ through consideration of existing alternatives (such as found within International Declaration on Human Genetic Data, UNESCO). Particular attention has been paid to any distinctions that may be drawn between a ‘bio-bank’ and any other collection of human tissue.
2. To recognise, draw together and develop work already undertaken to describe and compare similarities and differences of both substance and emphasis within national and European culture and society toward existing ethical conceptions of privacy and their foundation (e.g. individual autonomy cf. human dignity); To describe and compare commonalities and differences between ethical conceptions of privacy, engaged by research using genetic data and bio-banks, and recognised throughout the EU and EEA. To place particular emphasis on establishing the distribution of such conceptions across a number of indicators (geographic, cultural etc.); placing emphasis upon any divergence in the rights of an individual recognised as a member of a group rather than as an identifiable individual per se.
3. To establish whether and to what extent (across which geographic, disciplinary or other profiles) there is a common understanding of the rights and legitimate expectations of individuals (including third parties) to privacy in relation to research using genetic data and bio-banks. In particular, to evaluate the direction of the discussion: are we moving toward, or away from, a position from which it may be possible to identify a comprehensive ‘European’ view of what constitutes legitimate privacy interests?

This was examined not only in an interdisciplinary manner across Europe, but also taking account of the global context, and particularly of cultures with different traditions, values and conceptualisations of privacy. This context informed the remaining objectives.