Abstract
The right not to know is often defended on the basis of the principle of respect for personal autonomy. If I choose not to acquire personal information that impacts on my future prospects, such a choice should be respected, because I should be able to decide whether to access information about myself and how to use it. But, according to the incoherence objection to the right not to know in the context of genetic testing, the choice not to acquire genetic information undermines the capacity for autonomous decision making. The claim is that it is incoherent to defend a choice that is inimical to autonomy by appealing to autonomy. In this paper, I suggest that the choice not to know in the context of genetic testing does not undermine self-authorship, which is a key aspect of autonomous decision making. In the light of this, the incoherence objection to the right not to know seems less compelling.
Highlights
The incoherence objection to the right not to knowHe welcomes the possibility of constructing his life plan in the light of information about his probable future state of health, and wants to start developing strategies that will help him face the difficulties ahead
The right not to know is often defended on the basis of the principle of respect for personal autonomy
These considerations are usually grounded in the principle of respect for personal autonomy (e.g., Andorno 2004; Human Genetics Commission 2000, p. 19)
Summary
He welcomes the possibility of constructing his life plan in the light of information about his probable future state of health, and wants to start developing strategies that will help him face the difficulties ahead This makes good sense, given that Huntington disease in particular does impair one’s capacity for rational decision making. Francis and George preserve the capacity to shape their future by setting goals and making choices whether or not they decide to know about their likelihood to develop Huntington disease. The fact that they make different choices about whether to acquire genetic information is a manifestation of their different ways to shape their own future. One might find Francis’s way objectionable on the grounds that it does not allow him to develop contingency plans, but it seems far too strong to regard his choice as irrational, which we would be tempted to do if we were to embrace the incoherence objection
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