The right not to know: an autonomy based approach

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.

Autonomy and the patient's right ‘not to know’ in clinical whole-genomic sequencing

“…As Andorno 3 has noted, autonomy understood broadly, offers a theoretical basis for a right not to know one's genetic status. 3 We agree with the authors that more dialogue is needed around these issues and our comments are intended to contribute to this debate as new ethical challenges emerge around IF and WGS clinical disclosure.…”

“…Participants in our focus group study, which explored lay and patient attitudes about WGS IF clinical disclosure, strongly supported the right to say no to disclosure. 5 Following Andorno 3 we maintain that the right not to know must be offered but cannot be presumed, and must be 'activated' by a person's explicit choice. Also, it is not an absolute right; it may be restricted when disclosure relates to serious harm to third persons (p 435).…”

“…Also, it is not an absolute right; it may be restricted when disclosure relates to serious harm to third persons (p 435). 3 Exercising this right 'not to know' should be an informed choice. The patient and doctor need to discuss the risks and implications of both knowing the results and not knowing them including the reliability of the information.…”

DOHaD et information épigénétique

“…Il est parfois rapproché du « droit à un avenir ouvert », encore désigné sous l'expression de « droit à l'ignorance génétique » [22]. Parce que la transmission éventuelle du risque de développer une maladie chronique, que ce soit par des mécanismes épigénétiques ou par d'autres mécanismes, (➜) concerne la santé des générations futures, elle semble exiger de reconsidérer certains principes fondamentaux de l'éthique médicale, en l'occurrence la revendication d'un « droit de ne pas savoir » et le principe d'autonomie du patient [23]. La prise en compte d'informations relevant de l'épigénétique, dans cette perspective de santé, pèse de façon contraignante sur l'exercice de la liberté individuelle.…”

Informing on prenatal screening for Down syndrome prior to conception. An empirical and ethical perspective

“…However, debate exists on whether provision of information is a prerequisite for autonomy, or that the principle of respect for autonomy sometimes prescribes to protect people from unwarranted disclosures of information [Laurie, 2001]. The latter is conceptualized in the patient's ''right not-to-know'' [Andorno, 2004]. In this paper we consider the right not-to-know as an essential element of the framework of informed decision-making.…”