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  • Print publication year: 2014
  • Online publication date: September 2014

1 - The right to know and the right not to know: the emerging debate

Summary

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.

References
Chadwick, Ruth 1999. ‘Gene therapy and personal identity’, in Becker, Gerhold K. (ed.) The Moral Status of Persons: Perspectives on bioethics. Amsterdam: Rodopi, pp. 183–94.
Chadwick, Ruth 2011. ‘The communitarian turn: myth or reality?’, Cambridge Quarterly of Healthcare Ethics 20(4): 546–53.
Chadwick, Ruth and Berg, Kåre 2001. ‘Solidarity and equity: new ethical frameworks for genetic databases’, Nature Reviews Genetics 2: 318–21.
Chadwick, Ruth and O’Connor, Alan 2013. ‘Epigenetics and personalized medicine: prospects and ethical issues’, Personalized Medicine 10(5): 463–71.
European Commission 2012. Proposal for the EU General Data Protection Regulation. Available at: (accessed 8 July 2013).
Gymrek, M., McGuire, A. L., Golan, D., Halperin, E. and Erlich, Y. 2013. ‘Identifying personal genomes by surname inference’, Science 339(6117): 321–4.
Hildebrandt, Mireille 2008. ‘Defining profiling: a new type of knowledge?’ in Hildebrandt, M. and Gutwirth, S. (eds.) Profiling the European Citizen: Cross-disciplinary perspectives. Dordrecht:Springer, pp. 17–45.
Human Genome Organisation 2007. Statement on Pharmacogenomics, Solidarity and Equity.
Husted, Jørgen 1997. ‘Autonomy and a right not to know’, in Chadwick, Ruth, Levitt, Mairi and Shickle, Darren (eds.) The Right to Know and the Right Not to Know. Aldershot: Avebury, pp. 55–68.
Knoppers, Bartha and Chadwick, Ruth 1994. ‘The human genome project: under the international ethical microscope’, Science 265: 2035–2036.
Knoppers, Bartha and Chadwick, Ruth 2005. ‘Human genetic research: emerging trends in ethics’, Nature Reviews Genetics 6: 75–79.
Knoppers, Bartha M. and Saginur, M. 2005. ‘The Babel of genetic data terminology’, Nature Biotechnology 23(8): 925–7.
Lunshof, Jeantine, Chadwick, Ruth, Vorhaus, Daniel B. and Church, George M. 2008. ‘From genetic privacy to open consent’, Nature Reviews Genetics 9: 406–11.
McGleenan, Tony 1997. ‘Should there be a genetic privacy law?’ in Chadwick et al. (eds.), pp. 43–54.
Müller, M. and Kersten, S. 2003. ‘Nutrigenomics, goals and strategies’, Nature Reviews Genetics 4: 315–22.
Nissenbaum, Helen 2009. Privacy in Context: Technology, policy, and the integrity of social life. Stanford University Press.
Nuffield Council on Bioethics 2011. Solidarity: Reflections on an emerging concept in Bioethics. London.