StemCell Therapy

By Ben Davies

Most people accept that patients have a strong claim (perhaps with some exceptions) to be told information that is relevant to their health and medical care. Patients have a Right to Know. More controversial is the claim that this control goes the other way, too. Some people claim, and others deny, that patients also have a Right Not to Know.

A number of considerations (harm to the patient; autonomy; privacy) have been marshalled on either side of this debate over the past few decades (e.g. Laurie 2004; Robertson and Savulescu 2001; Herring and Foster 2012; Takala 2019). In this post, I focus on a distinct argument and its apparently unassailable logic. This is the view that a comprehensive Right Not to Know cannot be justified because in many cases a patients ignorance will likely lead harm to third parties (Council of Europe 1997; Rhodes 1998; Harris and Keywood 2001).

The logic of this argument is best put by Rhodes, who focuses on our rights and obligations with respect to genetic knowledge (though the priniple applies more widely). As she presents it, the lack of a Right Not to Know follows from the logic of a right, since To have a right is to have a freedom to do or not do, while to have a duty is to have no moral freedom. If you have an obligation to acquire certain medical information about yourself (as you do if your ignorance would harm others), you thus lack the moral freedom not to acquire that information. And that is, in Rhodess thinking, logically equivalent to lacking a right not to have that information.

This argument, superficially persuasive though it might be, faces two problems. Firstly, it is not true that the philosophers understanding of rights and duties as Rhodes puts it is as she suggests. Although she acknowledges as much in a footnote, her central argument ignores a further category of rights that exist in the canonical analysis by Hohfeld (1919). As well as understanding rights as liberties (i.e. absences of duties), Hohfeld suggests that we can understand them in several other ways, including as claims. Briefly, if A holds a claim-right against B, that means that B has a duty to A to do or not do something nothing is said about As duties (Wenar 2015).

The second issue is that in introducing this distinction, we can locate rights at different levels. Assume it is true that in some situations, a patient has an obligation to learn as much as possible about his health because of the potential impact on others. In this case it is true that he has a duty and hence no freedom at what we might call the moral level. Yet we might think that even in such cases, it is important that patients retain strong institutional protections against medical professionals, including a control over access to information about themselves. This would be a claim that patients have against medical professionals, justified at the institutional level of health care.

There is no paradox here. A patient can have a claim against, say, his doctor that she not give him information even if he has a duty (held towards separate individuals, such as relatives) to seek out that information. The compatibility of these two claims, and thus the failure of the argument from a duty to others, is obscured by ambiguity in the phrase, a Right Not to Know.

References

Council of Europe. 1997. Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine: Convention on human rights and biomedicine. European Treaty Series 164

J. Harris and K. Keywood. 2001. Ignorance, information and autonomy. Theoretical Medicine 22: 415-36.

J. Herring and C. Foster. 2012. Please dont tell me: The right not to know. Cambridge Quarterly of Healthcare Ethics 21: 20-29

W. Hohfeld. 1919.Fundamental Legal Conceptions, W. Cook (ed.). New Haven: Yale University Press.

G. Laurie. 2004. Recognizing the right not to know: Conceptual, professional, and legal implications. Journal of Law, Medicine and Ethics 42: 53-63.

R. Rhodes. 1998. Genetic links, family ties, and social bonds: Rights and responsibilities in the face of genetic knowledge. Journal of Medicine and Philosophy 23: 10-30.

S. Robertson and J. Savulescu. 2001. Is there a case in favour of predictive genetic testing in young children? Bioethics 15: 26-49

T. Takala. 2019. Genetic moralism and health. Cambridge Quarterly of Healthcare Ethics 28: 225-235

L. Wenar. Rights.The Stanford Encyclopedia of Philosophy

Read more:
The Right Not to Know and the Obligation to Know - Practical Ethics

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