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)

Challenging, with several powerful arguments, some of our deepest beliefs about rationality, morality, and personal identity, Parfit claims that we have a false view about our own nature. It is often rational to act against our own best interersts, he argues, and most of us have moral views that are self-defeating. We often act wrongly, although we know there will be no one with serious grounds for complaint, and when we consider future generations it is very hard to avoid conclusions (...) that most of us will find very disturbing. (shrink)

The question concerning an individual''s rightto remain in ignorance regarding her owngenetic makeup is central to debates aboutgenetic information. Whatever is decided onthis matter has a weighty bearing on all of therelated third-party issues, such as whetherfamily members or employers should be toldabout an individual''s genetic makeup. Thosearguing that no right to genetic ignoranceexists tend to argue from a viewpoint I havecalled in this paper reasonablepaternalism. It is an appealing position whichrests on widely shared intuitions on reasonablechoices, but which, in (...) the end, smugglespaternalism back to medical practice. (shrink)

In a contribution to The Journal of Medicine and Philosophy , Professor Rosamond Rhodes argues that individuals sometimes have an obligation to know about their genetic disorders, because this is required by their status as autonomous persons. Her analysis, which is based on Kant's concept of autonomy and Aristotle's notion of friendship, is extended here to consequentialist concerns. These are of paramount importance if, as we believe and Professor Rhodes herself implies, the Kantian and Aristotelian doctrines can be helpful only (...) in the sphere of private morality, not in the public realm. Better tools for assessing the right to genetic ignorance as an issue of public policy can, we contend, be found in Mill's ideas concerning liberty and the prevention of harm. Our own conclusion, based on the Millian way of thinking, is that individuals probably do have the right to remain in ignorance in the cases Professor Rhodes presents as examples of a duty to know. (shrink)

There is a common view in medical ethics that the patient's right to be informed entails, as well, a correlative right not to be informed, i.e., to waive one's right to information. This paper argues, from a consideration of the concept of autonomy as the foundation for rights, that there can be no such ‘right’ to refuse relevant information, and that the claims for such a right are inconsistent with both deontological and utilitarian ethics. Further, the right to be informed (...) is shown to be a mandatory right (though not a welfare right); persons are thus seen to have both a right and a duty to be informed. Finally, the consequences of this view are addressed: since the way in which we conceptualize our problems tends to determine the actions we take to resolve them, it is important properly to conceptualize patients' requests not to be informed. There may be many reasons for acting in accord with such a request, but it is a mistake to conceptualize one's act as ‘respecting a right possessed by persons’. Keywords: medical ethics, informed consent, autonomy, information-waivers, rights, obligations CiteULike Connotea Del.icio.us What's this? (shrink)

Clinical geneticists are increasingly confronted with ethical tensions between their responsibilities to individual patients and to other family members. This paper considers the ethical implications of a “familial” conception of the clinical genetics role. It argues that dogmatic adherence to either the familial or to the individualistic conception of clinical genetics has the potential to lead to significant harms and to fail to take important obligations seriously.Geneticists are likely to continue to be required to make moral judgments in the resolution (...) of such tensions and may find it useful to have access to ethics training and support. (shrink)

Understanding of the human genome and its functional significance has increased exponentially since the completion of the Human Genome Project in 2003. The HGP fueled the discovery of more than 1,800 disease genes and paved the way for researchers to identify and test for genes suspected of causing inherited diseases. Currently, there are more than 1000 genetic tests for human diseases and conditions on the market. These tests can play an integral role in the delivery of health care by providing (...) information that could potentially form the basis for profound life decisions, such as whether to undergo a prophylactic mastectomy, whether to terminate a pregnancy, or whether to take a particular drug or medication dose. (shrink)

Understanding of the human genome and its functional significance has increased exponentially since the completion of the Human Genome Project in 2003. The HGP fueled the discovery of more than 1,800 disease genes and paved the way for researchers to identify and test for genes suspected of causing inherited diseases. Currently, there are more than 1000 genetic tests for human diseases and conditions on the market. These tests can play an integral role in the delivery of health care by providing (...) information that could potentially form the basis for profound life decisions, such as whether to undergo a prophylactic mastectomy, whether to terminate a pregnancy, or whether to take a particular drug or medication dose. (shrink)

Understanding of the human genome and its functional significance has increased exponentially since the completion of the Human Genome Project in 2003. The HGP fueled the discovery of more than 1,800 disease genes and paved the way for researchers to identify and test for genes suspected of causing inherited diseases. Currently, there are more than 1000 genetic tests for human diseases and conditions on the market. These tests can play an integral role in the delivery of health care by providing (...) information that could potentially form the basis for profound life decisions, such as whether to undergo a prophylactic mastectomy, whether to terminate a pregnancy, or whether to take a particular drug or medication dose. (shrink)

A number of prominent bioethicists such as Mike Parker, Anneke Lucassen, and Bartha Maria Knoppers have called for the adoption of a system in which by default, genetic information is shared among family members. In this paper, I suggest that a main reason given in support of this call to share genetic information among family members is the idea that genetic information is essentially familial in nature. Upon examining this ‘familial nature of genetics’ argument, I show that most genetic information (...) are only shared in a weaker way among family members and do not necessarily lead to the actual manifestation of particular diseases. The upshot is that the idea that genetic information is familial in nature does not provide a sufficient ground for why we should move towards a system in which by default, genetic information is shared among family members. (shrink)

Most people believe that there are limits to the sacrifices that morality can demand. Although it would often be meritorious, we are not, in fact, morally required to do all that we can to promote overall good. What's more, most people also believe that certain types of acts are simply forbidden, morally off limits, even when necessary for promoting the overall good. In this provocative analysis Kagan maintains that despite the intuitive appeal of these views, they cannot be adequately defended. (...) In criticizing arguments for limited moral requirements as well as those for unconditionally prohibited acts, Kagan offers a sustained attack on two of the most basic features of ordinary common sense morality. (shrink)

Knowledge is generally a good thing. People who know lots of bits of information are generally admired. Some of them win prizes in TV competitions. If you were offered the gift of having an entire encyclopedia wired into your brain, you would probably accept, without thinking. But we should be wary of assuming that all knowledge is good. Too much knowledge can inhibit rather than enable thought.

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 physician-patient relationship has changed over the last several decades, requiring a systematic reevaluation of the competing demands of patients, physicians, and families. In the era of genetic testing, using a model of patient care known as the family covenant may prove effective in accounting for these demands. The family covenant articulates the roles of the physician, patient, and the family prior to genetic testing, as the participants consensually define them. The initial agreement defines the boundaries of autonomy and benefit (...) for all participating family members. The physician may then serve as a facilitator in the relationship, working with all parties in resolving potential conflicts regarding genetic information. The family covenant promotes a fuller discussion of the competing ethical claims that may come to bear after genetic test results are received. (shrink)

The physician-patient relationship has changed over the last several decades, requiring a systematic reevaluation of the competing demands of patients, physicians, and families. In the era of genetic testing, using a model of patient care known as the family covenant may prove effective in accounting for these demands. The family covenant articulates the roles of the physician, patient, and the family prior to genetic testing, as the participants consensually define them. The initial agreement defines the boundaries of autonomy and benefit (...) for all participating family members. The physician may then serve as a facilitator in the relationship, working with all parties in resolving potential conflicts regarding genetic information. The family covenant promotes a fuller discussion of the competing ethical claims that may come to bear after genetic test results are received. (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.

Issues in medical ethics are rarely out of the media and it is an area of ethics that has particular interest for the general public as well as the medical practitioner. This short and accessible introduction provides an invaluable tool with which to think about the ethical values that lie at the heart of medicine. Tony Hope deals with thorny moral questions, such as euthanasia and the morality of killing, and also explores political questions such as: how should health care (...) resources be distributed fairly? (shrink)