The Right to Know and the Right Not to Know – Ten Years On

Over ten years ago, 1997 saw the publication of The Right to Know and the Right Not to Know, edited by myself together with Mairi Levitt and Darren Shickle (Chadwick et al. 1997). Although it was in fact one of the outputs of the Euroscreen project funded by the European Commission (Euroscreen 1, 1994-6; Euroscreen 2, 1996-9), it had not been planned at the outset: the theme emerged from our work towards other objectives. Explicit discussion of this theme, although discussed in relation to specific dilemmas, for example, concerning what circumstances, if any, justify disclosure in genetic counselling, was at the time less prominent than it has since become. In this chapter I attempt to outline the main trends and ways in which the debate has moved on in the intervening time. These ways can, I think, be classified into three groups, arising from changes in context, changes in issues and changes in ethical approaches.