In this chapter we aim to outline some of the ways in which the debate over the right to know and the right not to know has moved on since this book was first published in 1997. The issues in genetics and genomics have moved even further out of the clinic, notably in the context of population-wide genomics research and commercial testing.
At the time of the first edition of this volume, ‘the right to know/not to know’ was a prominent framing of issues in genetics. Today, this framing is less overt, though still relevant. Other rights are increasingly discussed, such as the right to be forgotten, discussed here in Chapter 5. But beyond framings using rights language, debates in genetics, genomics and other areas are frequently discussed in relation to privacy and data protection, concepts closely related to the right (not) to know.
Privacy is a wider concept than data protection and includes spatial and decisional privacy as well as privacy in relation to personal information, the aspect of privacy most clearly implicated in genetics. In the 1990s the EU Directive on Data Protection came into force, recognising that data needs to flow across the European Union (and beyond), but that safeguards are necessary. Since the Directive, privacy and data protection have come increasingly under challenge, and the challenges are of different types. There are, first, intentional encroachments upon privacy in a society concerned with surveillance and security, by governments and corporations. These are justii ed by a ‘trade-off ’ argument: some privacy is surrendered in exchange for benefits. The second type of challenge occurs as a seemingly unavoidable side effect of new technologies: mobile phones reveal our location; and it is claimed, for example, that privacy can no longer be guaranteed in the light of technological developments (see, e.g., Lunshof et al. 2008 ). Thirdly there is cultural change in the form of what may be called the ‘new exhibitionism’, which we have seen in the explosion of social media.