Abstract
This chapter deals with the ethical controversies related to the so-called right-not-to-know in biomedicine. By problematizing the substantive conflicts at the basis of patient’s decision to waive some health-related information, the chapter provides a normative map for instructing the practice of Ethical Counselling in the face of these claims. In particular, it is argued that both self-regarding and other-regarding considerations in the exercise of the right-not-to-know may ground or dismiss its ethical and legal legitimacy and may prove fundamental aspects of ethical counselling processes.
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Notes
- 1.
This is not meant to affirm that genetic information differs, in an ethically relevant manner, from other types of medical information. Rather, this chapter will treat genetic knowledge very much like any other kind of knowledge about our health, thus rejecting claims of ‘genetic exceptionalism’. For a discussion of the reasons in favour and against genetic exceptionalism, see Green and Botkin (2003), Rothstein (2007).
- 2.
By “welfarist considerations” we mean here to refer, very broadly, to the justificatory nature that affecting the well-being of an individual may have for guiding human agency. For a philosophical introduction to the concept of well-being and its normative import on welfarist moral theories, see Roger Crisp’s entry “Well-being” in the Stanford Encyclopedia of Philosophy.
- 3.
Very much like in the case of ‘welfarism’ above, the reader who may want to plunge into the philosophical debate on the concept of autonomy may find useful to consult John Christman’s “Autonomy in Moral and Political Philosophy” in the Stanford Encyclopedia of Philosophy.
- 4.
Council of Europe (1997a).
- 5.
Council of Europe (1997b).
- 6.
UNESCO (1997).
- 7.
World Health Organization (1998).
- 8.
The fact-sheet on the XYY syndrome by Genetic Alliance UK can be found at the following address: http://www.geneticalliance.org.uk/docs/translations/english/25-xyyt.pdf (last accessed: July, 1 2015).
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Chiapperino, L. (2016). The ‘Right-not-to-Know’. In: Boniolo, G., Sanchini, V. (eds) Ethical Counselling and Medical Decision-Making in the Era of Personalised Medicine. SpringerBriefs in Applied Sciences and Technology(). Springer, Cham. https://doi.org/10.1007/978-3-319-27690-8_8
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DOI: https://doi.org/10.1007/978-3-319-27690-8_8
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