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The right not to know: an autonomy based approach

Correspondence to:
R Andorno
Interdepartmental Center for Ethnics in the Sciences and Humanities (IZEW), University of Tübingen, Wilhelmstr. 19, 72074 Tübingen, Germany; roberto.andorno{at}uni-tuebingen.de
ABSTRACT
The emerging international biomedical law tends to recognise the right not to know one’s genetic status. However, the basis and conditions for the exercise of this right remain unclear in domestic laws. In addition to this, such a right has been criticised at the theoretical level as being in contradiction with patient’s autonomy, with doctors’ duty to inform patients, and with solidarity with family members. This happens especially when non-disclosure poses a risk of serious harm to the patient’s relatives who, without that vital information, could be deprived of preventive or therapeutic measures. This paper argues, firstly, that individuals may have a legitimate interest in not knowing their genetic make up to avoid serious psychological consequences; secondly, that this interest, far from being contrary to autonomy, may constitute an enhancement of autonomy; thirdly, that the right not to know cannot be presumed, but must be "activated" by the individual’s explicit choice, and fourthly, that this is not an absolute right, in the sense that it may be restricted when disclosure to the patient is necessary in order to avoid a risk of serious harm to third persons.

Keywords: genetic information; autonomy; right not to know

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