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Consent to epistemic interventions: a contribution to the debate on the right (not) to know

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Abstract

The debate on the ‘right (not) to know’ has simmered on for over 30 years. New examples where a right to be informed is contrasted to a right to be kept in ignorance occasionally surface and spark disagreement on the extent to which patients and research subjects have a right to be self-determining concerning the health related information they receive. Up until now, however, this debate has been unsatisfactory with regard to the question what type of rights—if any—are in play here and to what extent they can provide a normative basis for informed consent. This paper provides an analysis of informed consent in the context of ‘epistemic interventions’: interventions which involve the communication of (health-related) information. First, I offer an analysis of the concept of a ‘right not to know’ in the context of consent to epistemic interventions. I argue that the scope of the consent is determined by the extent to which this intervention can be seen as an infringement of the private sphere. After that I show how this analysis affects the scope and standards of informed consent.

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Notes

  1. Not altogether convincingly, however, see footnote 14.

  2. The concept of a right not to know is mirrored by the right to know, although, as I will show, they differ in their moral underpinnings. I will use the common abbreviation ‘right (not) to know’ to refer to the pair.

  3. Most notably around the turn of the century, see for example Andorno (2004), Bottis (2000), Chadwick et al. (1997), Harris and Keywood (2001), Laurie (2000), Rhodes (1998), Takala (1999) and Räikkä (1998).

  4. For example, influential reports on genetics, screening, research ethics and many public health-related issues all emphasize the importance of consent for epistemic information. See for example ACMG (2013), AAP (2013), President's Council (2008) and UNESCO (2003).

  5. See however Räikkä (1998), Laurie (1999), Häyry and Takala (2001) and Wilson (2005). Even these exceptions, however, remain sketchy on the question exactly what type of rights are involved.

  6. By ‘legitimate’ I mean both in a legal and a moral sense. A discussion of informed consent should, in my opinion, take both these senses into account, without conflating the two.

  7. I thus leave out issues having to do with parental authority or responsibilities to third parties in general. While I acknowledge that in genetic practice the claims of different parties are more often than not interwoven and that ethical analysis should take this into account, I believe that in order to meaningfully state anything about the conception of a right (not) to know we must first look at the individual claims involved.

  8. In the case of consent to epistemic interventions there are thus two levels of disclosure: the information given prior to the consent (describing possible outcomes, risks and so on) and the information which is the object of consent (the actual epistemic intervention).

  9. I leave the possibility of duties to which no specific rights correspond—for example duties towards the environment—to one side.

  10. See, however Matthew Kramer in Kramer et al. (1998).

  11. Häyry and Takala (2001) distinguish between claim-rights and liberties in this context. However, their elaboration of the distinction remains sketchy.

  12. Nor can there be a ‘right to life’ or a ‘right to health’, at least not if we take this literally. See also (O'Neill 2002, p. 10).

  13. Also quoted by Laurie (1999, p. 127).

  14. These are the examples which David Ost appears to have overlooked in the paper mentioned earlier. Tuija Takala makes a convincing case that in these cases refusing information is in no way irrational (Takala 1999).

  15. Note that this is a much broader interpretation of the right to informational privacy than merely the requirement that certain information is not disclosed to third parties.

  16. An interesting set of questions which I do not here have the opportunity to expound upon concern the role of epistemic interventions with regard to children, who typically do not yet have a fully developed set of values.

  17. Whether or not it is considered to be thus, is of course to a large extent a political decision: it depends on societal norms on the what is to be considered ‘private’.

  18. Note that I am still agnostic on the question whether the class of interventions which fall into this category is empty or not: I do not make any claims on whether a supposed right (not) to know is legitimate or not.

  19. The first line of reasoning is not uncommon, see for example Henn (2009).

  20. I am grateful to an anonymous reviewer of Medicine, Health Care and Philosophy for pressing me on this distinction.

  21. Sheehan likens broad consent to letting someone else decide for you what to order in a restaurant.

  22. A further complication with regard to this question is that modern techniques such as genome analysis tend to reveal information that was unforeseen at the moment of consent, or at least not part of the initial disclosure: so-called ‘unsolicited information’. For such information it is inevitable that the health care professional makes decisions on what to do with to information. How should one anticipate such information in the informed consent procedure? See for example Clayton (2008) and Wolf (2008).

  23. Of course, this raises the question how exactly the relationship between professional and subjects shapes the relevant rights and how, from an institutional perspective, these rights may be protected. These points require further analysis, which I hope to present elsewhere.

  24. See Rothstein (2006), Nijsingh (2007), Bredenoord et al. (2011) and Steinsbekk (2011).

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Acknowledgments

I wish to thank Marcel Verweij, Annemarie Kalis and Marcus Düwell for comments on earlier drafts of this paper and for their helpful suggestions. Also I am grateful to the Practical Philosophy Colloquium of the Department of Philosophy at Utrecht University and the OZSW Ethics and Health working group for giving me the opportunity to present this paper. Most of all I am deeply indebted to Anne van Bergen, for her devastating criticism and for many constructive sparring sessions.

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    Niels Nijsingh

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Nijsingh, N. Consent to epistemic interventions: a contribution to the debate on the right (not) to know. Med Health Care and Philos 19, 103–110 (2016). https://doi.org/10.1007/s11019-015-9650-9

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