Untitled

Abstract

People have a powerful interest in genetic privacy and its associated claim to ignorance, and some equally powerful desires to be shielded from disturbing information are often voiced. We argue, however, that there is no such thing as a right to remain in ignorance, where a fight is understood as an entitlement that trumps competing claims. This does not of course mean that information must always be forced upon unwilling recipients, only that there is no prima facie entitlement to be protected from true or honest information about oneself. Any claims to be shielded from information about the self must compete on equal terms with claims based in the rights and interests of others. In balancing the weight and importance of rival considerations about giving or withholding information, if rights claims have any place, rights are more likely to be defensible on the side of honest communication of information rather than in defence of ignorance. The right to free speech and the right to decline to accept responsibility to take decisions for others imposed by those others seem to us more plausible candidates for fully fledged rights in this field than any purported right to ignorance. Finally, and most importantly, if the right to autonomy is invoked, a proper understanding of the distinction between claims to liberty and claims to autonomy show that the principle of autonomy, as it is understood in contemporary social ethics and English law, supports the giving rather than the withholding of information in most circumstances.

Looking for Trouble: Preventive Genomic Sequencing in the General Population and the Role of Patient Choice

“…Meanwhile, others argue that autonomy cannot be the basis of a right not to know genetic information because if one decides not to know relevant genetic information, one chooses “to leave things to chance” and “follow a path without autonomy”(Rhodes 1998, 18). Furthermore, some argue that even if rights not to know exist, they lack parity with the right to know, and are easily outweighed by other relevant considerations (Harris and Keywood 2001). …”

The relative importance of undesirable truths

“…Different versions of this objection have been put forward (see Harris and Keywood 2001; Malpas 2005; Rhodes 1998). Here are the key formulations:

[W]e cannot defend a right not to know our genetic information in the name of autonomy alone.

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“…This is also the aspect of autonomy that Harris and Keywood (2001) focus on when they attack the legitimacy of a right not to know. They write:

The point of autonomy, the point of choosing and having the freedom to choose between competing conceptions of how, and indeed why, to live, is simply that it is only thus that our lives become in any real sense our own.

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“…Our own choices, decisions and preferences help to make us what we are, for each helps us to confirm and modify our own character and enables us to develop and to understand ourselves. (Harris and Keywood 2001, p. 420).Obviously, knowledge of different sorts informs the making of autonomous choices. In a successful life plan goals are truly valued by an agent and are achievable, having being selected on the basis of an agent’s beliefs, desires and values, of her competencies and limitations, and of the relevant features of the surrounding physical and social environment.…”

Ethical Rhetoric: Genomics and the Moral Content of UNESCO’s ‘Universal’ Declarations

“…Although much can be (and has been [21][22][23][24]) said about the instruments' lack of specific guidance as to how some of these individual rights are to be realised (particularly in the genomic context where traditional understandings of, and limits associated with, them are less applicable), it is clear that both are heavily influenced by a shared vision of autonomy, a value which, based on the above, encompasses the idea that individuals, by virtue of being human and therefore having dignity and deserving respect, are entitled to exercise their free will and to govern themselves. This self-rule encompasses physical and legal liberty, and the right to be free from coercive or controlling influences with respect to same.…”