Recalling that the Preamble of UNESCO's Constitution refers to “the democratic principles of the dignity, equality and mutual respect of men”, rejects any “doctrine of the inequality of men and races”, stipulates “that the wide diffusion of culture, and the education of humanity for justice and liberty and peace are indispensable to the dignity of men and constitute a sacred duty which all the nations must fulfil in a spirit of mutual assistance and concern”, proclaims that “peace must be founded (...) upon the intellectual and moral solidarity of mankind”, and states that the Organization seeks to advance “through the educational and scientific and cultural relations of the peoples of the world, the objectives of international peace and of the common welfare of mankind for which the United Nations Organization was established and which its Charter proclaims”. (shrink)

This is the first publication of these ideas in book form. 'It is a rare treat--important, original philosophy that is also a pleasure to read.

The notion of autonomy commonly employed in medical ethics literature and practices is inadequate on three fronts: it fails to properly identify nonautonomous actions and choices, it gives a false account of which features of actions and choices makes them autonomous or nonautonomous, and it provides no grounds for the moral requirement to respect autonomy. In this paper I offer a more adequate framework for how to think about autonomy, but this framework does not lend itself to the kinds of (...) practical application assumed in medical ethics. A general problem then arises: the notion of autonomy used in medical ethics is conceptually inadequate, but conceptually adequate notions of autonomy do not have the practical applications that are the central concern of medical ethics. Thus, a revision both of the view of autonomy and the practice of “respect for autonomy” are in order. (shrink)

One of the much debated issues around the evolving human genetics is the question of the right to know versus the right not to know. The core question of this theme is whether an individual has the right to know about her own genetic constitution and further, does she also have the right to remain in ignorance. Within liberal traditions it is usually held that people, if they so wish, have the right to all the knowledge available about themselves. This (...) right is based on the value of autonomy or on the right of self‐determination, and it is sometimes partly justified as a countermeasure to the authorities' control over people. I do not wish to deny the right to genetic knowledge (about oneself). I think that its existence is self‐evident. The argument I want to put forth in this paper is that in liberal societies we should acknowledge people’s right to remain in ignorance as well. The only reason for not doing this would be that grave harm to others would follow if people were allowed to make these seemingly self‐regarding decisions. Arguments presented against the right to ignorance are twofold. First there are those arguing against the right to ignorance on the grounds of harm to others, that is, philosophers who do not deny people’s right to ignorance in self‐related matters but wish to state that genetic ignorance causes harm to others, and this is one of the most commonly accepted reason for restricting people’s freedom. The other line of argument flows from the Kantian view that not even merely self‐regarding foolishness (in the eyes of others) should be allowed. (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)

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)

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)

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)

Advances in DNA sequencing technology open new possibilities for public health genomics, especially in the form of general population preventive genomic sequencing. Such screening programs would sit at the intersection of public health and preventive health care, and thereby at once invite and resist the use of clinical ethics and public health ethics frameworks. Despite their differences, these ethics frameworks traditionally share a central concern for individual rights. We examine two putative individual rights—the right not to know, and the child’s (...) right to an open future—frequently invoked in discussions of predictive genetic testing, in order to explore their potential contribution to evaluating this new practice. Ultimately, we conclude that traditional clinical and public health ethics frameworks, and these two rights in particular, should be complemented by a social justice perspective in order adequately to characterize the ethical dimensions of general population PGS programs. (shrink)

The idea that an individual has a ‘right not to know’ genetic information about himself or herself is entrenched in both the policy sphere and the genetic counselling ethos. In this paper, I interrogate this idea of a ‘right not to know’, questioning particularly its status as a right. I identify the conception of rights that seems to underlie the posited ‘right not to know’ as a conception of rights in which they are prioritised non-outweighable interests. Turning to a series (...) of hypothetical situations in which the ‘right not to know’ is invoked, I argue that the ‘right not to know’ is not a right consistent with such a conception. The ‘right not to know’ can only exist in a framework of rights in which they lack significant moral weight. Thus, considering the gravity of rights in popular understanding, I suggest caution in the continuing use of the phrase ‘right not to know’ in the context of genetic testing. This investigation suggests that structuring the debate around genetic ignorance in terms of the ‘right not to know’ is not conducive to moving forward ethical thinking in this area. (shrink)

New dimensions in different ethical scenarios following genetic information require new medical-ethical Action Guides for physician-patient interaction. This paper discusses the ambiguity in moral choice between a “right not to know” and “a duty to know”, regarding parental decisionmaking pro or contra selective abortion following prenatal screening for autosomal dominant polycystic kidney disease (Potter III) and related public policy issues.

Perfectionism is one of the leading moral views of the Western tradition, defended by Plato, Aristotle, Aquinas, Leibniz, Hegel, Marx, Nietzsche, and Green. Defined broadly, it holds that what is right is whatever most promotes certain objective human goods such as knowledge, achievement, and deep personal relations. Defined more narrowly, it identifies these goods by reference to human nature, so the human good consistsin developing the properties fundamental to human beings. If it is fundamental to humans to be rational (Aristotle), (...) to labor (Marx), or to exercise power (Nietzsche), developing these traits is best. This book tries to formulate the most defensible version of perfectionism using contemporary analytic techniques. It first examines narrow perfectionism, asking what kind of properties human nature consists in (distinctive? essential?); how these properties are identified; and what they are. It then explores issues relevant to both broad and narrow perfectionism, including whether each person should pursue just his own perfection or everyone's; how perfectionist goods are compared and aggregated; and in what particular times they are. On the last topic it develops an “Aristotelian” theory of the value of theoretical and practical rationality, as embodied in beliefs and ends with specified formal properties. The book closes by examining perfectionism's implications for political questions about liberty and equality. (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)

When the complete human genomehas been sequenced, everyone of us will becomea potential candidate for genetic counselingand testing. Within a short period of timeeveryone will obtain his personal geneticpassport identifying deleterious andsusceptibility genes. With the availability ofpresymptomatic tests for late-onset disordersand the possibilities of prevention andtreatment, the conflict between directivenessand non-directiveness will dominate thecounseling setting. Despite general consent onproviding genetic information in a nondirectivefashion to preserve value neutrality andenhance client's autonomy, there is no acceptedcommon definition of what non-directivenessreally is or (...) ought to be. The article tries toelaborate some aspects which might be fruitfuland clarifying in the complex issues involvedin the black box of genetic counseling. (shrink)

Book reviewed in this article: Principles of Biomedical Ethics. By Tom L. Beauchamp and James F. Childress.

The concept of autonomy plays a central role in bioethics,1 but there is no consensus as to how we should understand it beyond a general notion of self-determination. The conception of autonomy deployed in applied ethics2 can have crucial ramifications when it is applied in real-world scenarios, so it is important to be clear. However, this clarity is often lacking when autonomy is discussed in the bioethics literature. In this paper we outline three different conceptions of autonomy, and argue that (...) a substantive, perfectionist approach meets the theoretical requirements for an account of autonomy and also provides practical guidance. As Rebecca Walker argues, bioethics requires a more conceptually adequate account... (shrink)

'it is only the cultivation of individuality which produces, or can produce, well developed human beings'Mill's four essays, 'On Liberty, 'Utilitarianism', 'Considerations on Representative Government', and 'The Subjection of Women' examine the most central issues that face liberal democratic regimes - whether in the nineteenth century or the twenty-first. They have formed the basis for many of the political institutions of the West since the late nineteenth century, tackling as they do the appropriate grounds for protecting individual liberty, the basic (...) principles of ethics, the benefits and the costs of representative institutions, and the central importance of gender equality in society.These essays are central to the liberal tradition, but their interpretation and how we should understand their connection with each other are both contentious. In their introduction Mark Philp and Frederick Rosen set the essays in the context of Mill's other works, and argue that his conviction in the importance of the development of human character in its full diversity provides the core to his liberalism and to any defensible account of the value of liberalism to the modern world. (shrink)

In Freedom Within Reason, Susan Wolf charts a course between incompatibilism, or the notion that freedom and responsibility require causal and metaphysical independence from the impersonal forces of nature, and compatibilism, or the notion that people are free and responsible as long as their actions are governed by their desires. Wolf argues that some of the forces which are beyond our control are friends to freedom rather than enemies of it, enabling us to see the world for what it is. (...) The freedom we want is not independence from the world, but independence from the forces that prevent us from choosing how to live in the light of a sufficient appreciation of the world. (shrink)

We are all familiar with assertions of rights: we talk of the right to confi dentiality, the right to health care and, more controversially, the right to die. But beneath this surface familiarity lies a heap of diffi culties about what it is to have a right, how we should go about determining which assertions of rights are genuine and what role (if any) rights should play in our broader moral thinking. This chapter aims to offer a guide through these (...) perplexities. (shrink)

This important new book develops a new concept of autonomy. The notion of autonomy has emerged as central to contemporary moral and political philosophy, particularly in the area of applied ethics. professor Dworkin examines the nature and value of autonomy and uses the concept to analyse various practical moral issues such as proxy consent in the medical context, paternalism, and entrapment by law enforcement officials.

I argue that one has a right when another has a normative constraint with respect to one. The fact that claims and immunities are the only Hohfeldian elements which constrain another combined with the fact that rights necessarily constrain others gives us reason to think that to have a right is to have either a claim OR an immunity. Hohfeldian elements can be defined in terms of fundamental normative concepts such as obligation and impossibility. This analysis provides a plausible account (...) of liberty and power rights. The analysis also resolves the puzzles surrounding mandatory or obligation rights and rights which do not benefit the rightholder. To have a normative constraint with respect to another is to have an obligation or impossibility grounded in a feature of the rightholder. The analysis of rights provides good, but not conclusive, reason to think that there are moral rights. Further, the analysis reveals that the specificity view of rights conflict is true. (shrink)