ABSTRACT This paper examines some arguments which deny the existence of an individual right to remain ignorant about genetic information relating to oneself – often referred to as ‘a right to genetic ignorance’ or, more generically, as ‘a right not to know’. Such arguments fall broadly into two categories: 1) those which accept that individuals have a right to remain ignorant in self‐regarding matters, but deny that this right can be extended to genetic ignorance, since such ignorance may be harmful (...) to others, particularly those to whom one is genetically related (the ‘harm to others objection’) and 2) those which contend that, even if genetic ignorance is only self harming, it is not something to which individuals can rationally or morally claim to have a ‘right’ at all, since they defend their claims on autonomy‐respecting grounds and ignorance is inimical to autonomy (the ‘incoherence objection’). I argue that defenders of a right not to know have some plausible responses to the ‘harm to others objection’, but that in trying to respond to the ‘incoherence objection’, they and their opponents reach an impasse in which both sides are left voicing concerns about the paternalistic implications of the other's point of view. I conclude that defenders of a right not to know would, therefore, advance their position further by analysing it in terms of values other than those of autonomy and rights. (shrink)

Currently, some of the most significant moral issues involving genetic links relate to genetic knowledge. In this paper, instead of looking at the frequently addressed issues of responsibilities professionals or institutions have to individuals, I take up the question of what responsibilities individuals have to one another with respect to genetic knowledge. I address the questions of whether individuals have a moral right to pursue their own goals without contributing to society's knowledge of population genetics, without adding to their family's (...) knowledge of its genetic history, and without discovering genetic information about themselves and their offspring. These questions lead to an examination of the presumed right to genetic ignorance and an exploration of a variety of social bonds. Analyzing cases in light of these considerations leads to a surprising conclusion about a widely accepted precept of genetic counseling, to some ethical insights into typical problems, and to some further unanswered questions about personal responsibility in the face of genetic knowledge. (shrink)

Communicating genetic information to family members has been the subject of an extensive debate recently in bioethics and law. In this context, the extent of the relatives’ right to know and not to know is examined. The mainstream in the bioethical literature adopts a liberal perception of patient autonomy and offers a utilitarian mechanism for solving familial tensions over genetic information. This reflects a patient-centred approach in which disclosure without consent is justified only to prevent serious harm or death to (...) others. Based on a legal and bioethical analysis on the one hand, and an examination of empirical studies on the other, this paper advocates the adoption of a relational perception of autonomy, which, in the context of genetics, takes into account the effect that any decision—whether to disclose or not to disclose—will have on the familial relationship and the dynamics of the particular family. Adding this factor to the criteria usually advocated by lawyers and ethicists will facilitate reaching a sensitive decision, which recognises the various interests of family members beyond the risk to physical health. Taking this factor into account will require a process of deliberation both between doctors and patients, and in the family. It will also require a relaxation of medical confidentiality, as the family rather than the patient is gradually perceived as the unit of care. Moreover, adopting such a relational approach will accord with current views of doctors and patients who base their decision primarily on the nature of the familial relationship. (shrink)

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. (shrink)

The article discusses the relationship between the notion of a moral right to personal self‐determination, the notion of a moral right to know and the notion of a moral right not to know. In particular, the author asks under what conditions, if any, the right to self‐determination implies a right to have information or a right not to have information. The conclusions he defends are theoretical in character rather than concrete norms and directions, and they are intended to be relevant (...) in many contexts, not only in the context of information concerning, say, medical decisions. Yet the author restates the question concerning the right to have and especially the right not to have genetic knowledge about one's own genes on the basis of a right to self‐determination. He argues that a right (not) to have genetic information can be defended on the ground of a right to self‐determination, but that this kind of defense presupposes several normative, and controversial, arguments. (shrink)

People have a powerful interest in geneticprivacy and its associated claim to ignorance,and some equally powerful desires to beshielded from disturbing information are oftenvoiced. We argue, however, that there is nosuch thing as a right to remain in ignorance,where a right is understood as an entitlementthat trumps competing claims. This doesnot of course mean that information must alwaysbe forced upon unwilling recipients, only thatthere is no prima facie entitlement to beprotected from true or honest information aboutoneself. Any claims to be (...) shielded frominformation about the self must compete onequal terms with claims based in the rights andinterests of others. In balancing the weightand importance of rival considerations aboutgiving or withholding information, if rightsclaims have any place, rights are more likelyto be defensible on the side of honestcommunication of information rather than indefence of ignorance. The right to free speechand the right to decline to acceptresponsibility to take decisions for othersimposed by those others seem to us moreplausible candidates for fully fledged rightsin this field than any purported right toignorance. Finally, and most importantly, ifthe right to autonomy is invoked, a properunderstanding of the distinction between claimsto liberty and claims to autonomy show that theprinciple of autonomy, as it is understood incontemporary social ethics and English law,supports the giving rather than the withholdingof information in most circumstances. (shrink)

The right not to know is underappreciated in policy-making. Despite its articulation in medical law and ethics, policy-makers too easily let other concerns override the right not to know. This observation is triggered by a recent decision of the Dutch government on embryo selection for Huntington’s disease. This is a monogenetic debilitating disease without cure, leading to death in early middle age, and thus is a likely candidate for preimplantation genetic diagnosis. People possibly affected with the Huntington gene do not (...) always want to know their genetic status themselves, which is very burdensome knowledge. For prospective parents, this creates a difficulty in having unaffected children through embryo selection without knowing their own genetic status. A solution is provided by the exclusion test: it allows embryo selection while honouring the parents’ right not to know. The Dutch government however disallowed the exclusion test and chose to allow PGD on Huntington only for parents who test themselves first. To avoid “unnecessary” in-vitro fertilisation procedures for unaffected parents, prospective parents are “forced to know” before they can conceive through embryo selection. This article analyses the scope of the right not to know in the context of embryo selection against Huntington’s disease. It concludes that the right not to know implies that PGD against Huntington should be allowed by means of the exclusion test. (shrink)

This volume contains essays which cover a range of aspects in the debate over genetic testing. It looks at both the advantages and disadvantages involved in knowing or not knowing whether one is a carrier of certain genetic traits.