In lieu of an abstract, here is a brief excerpt of the content:Philosophy, Psychiatry, & Psychology 11.4 (2004) 299-301 [Access article in PDF] The Right Not to Know: A Challenge for Accurate Self-Assessment Ruth F. Chadwick Anderson and Lux present a very interesting and thought-provoking argument for the view that accurate self-assessment is a requirement for personal autonomy. What I want to suggest is that although this may be helpful in the context with which these authors are primarily concerned, namely (...) psychiatry and brain dysfunction, it is of less value to an account of autonomy more widely construed. I want to look at a possible counterexample, taken from another area of medicine, namely genetics.Toward the end of their article Anderson and Lux consider three objections to their position. I shall not discuss them all. My concern is with the third, that inaccurate self-assessment sometimes promotes autonomy, because knowing the truth about one's weaknesses is sometimes very debilitating. It is commonly argued that "you can if you think you can" and vice versa. As they point out, there are some complex issues involved here, in that if the result of the positive thinking is the ability to do the thing in question, then how can the self-assessment be deemed to have been inaccurate in the first place? They go on, however, to say that "it is unclear that inflated self-assessments yield benefits in contexts where what is required is not just effort but competence" (290).Now it has been argued, by some, in the context of genetics, that the proper understanding of autonomy may imply a "right not to know" facts about oneself. In other words, this is not just a matter of accurate or inaccurate assessment of the relevant facts about oneself; rather, what may be involved is a deliberate decision not to have access to facts that may be relevant to that assessment. There are clearly cases in which genetic information appears to be pertinent to an accurate self-assessment, as the following example suggests. Suppose there is information "available", through genetic testing, that would affect one's chances of having children, or of having children without a particular genetic disorder, and, knowing that such information is available, a couple decides not to avail themselves of this. This is clearly an inaccurate self-assessment, but is their autonomy compromised?It might be thought that the reasons for this decision not to know could be relevant. If they have no family history of any particular genetic disorder, it could be regarded as subjectively reasonable to decline such testing as might be offered. Anderson and Lux, however, argue that whether or not a self-assessment is accurate depends on externalities. In other words, A's self-assessment is not to be assessed as accurate, or [End Page 299] not, according to what it is subjectively reasonable to believe; it has to be measured against the facts. The more that the possibilities of genetic testing increase, the more that "facts" of this nature will be available, including in the context of psychiatry.It might be objected that genetic information is not the type of information that is relevant in this context. In so far as it is predictive and probabilistic it is, arguably, different from the type of diagnostic information involved in the cases discussed by Anderson and Lux. It is not the place here, however, to discuss in general terms the thesis of "genetic exceptionalism" with regard to medical information. The important point is refusal of access to information that may be relevant to an accurate self-assessment. Historically, people have been mistaken in their self-assessment because of lack of information—for example, lack of understanding of facts about the reproduction process has led individuals automatically to blame the woman partner of a couple for infertility. And, as Anderson and Lux rightly point out, being autonomous is compatible with making mistakes, and indeed requires the freedom to make mistakes, it would look rather different if a person continued to hold this without any attempt to avail himself of the relevant—and now available—information... (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 field of bioethics is increasingly coming into contact with empirical research findings. In this article, we ask what role empirical research can play in the process of ethical clarification and decision-making. Ethical reflection almost always proceeds in three steps: the description of the moral question,the assessment of the moral question and the evaluation of the decision-making. Empirical research can contribute to each step of this process. In the description of the moral object, first of all, empirical research has a (...) role to play in the description of morally relevant facts. It plays a role in answering the “reality-revealing questions” (what, why,how, who, where and when), in assessing the consequences and in proposing alternative courses of action. Secondly, empirical research plays a role in assessing the moral question. It must be acknowledged that research possesses “the normative power of the factual,” which can also become normative by suppressing other norms. However, inductive normativity should always be balanced out by a deductive form of normativity. Thirdly, empirical research also has a role to play in evaluating the decision-making process. It can rule out certain moral choices by pointing out the occurrence of certain unexpected consequences or effects. It can also be useful, however, as a sociology of bioethics in which the discipline of bioethics itself becomes an object of research. (shrink)

Unlike most Western nations, Israel does not recognize full separation of church and state but seeks instead a gentle fusion of Jewish and democratic values. Inasmuch as important religious norms such as sanctity of life may clash with dignity, privacy, and self-determination, conflicts frequently arise as Israeli lawmakers, ethicists, and healthcare professionals attempt to give substance to the idea of a Jewish-democratic state. Emerging issues in Israeli bioethics—end-of-life treatment, fertility, genetic research, and medical ethics during armed conflict—highlight this conflict vividly.

John Fischer and Mark Ravizza defend in this book a painstakingly constructed analysis of what they take to be a core condition of moral responsibility: the notion of guidance control. The volume usefully collects in one place ideas and arguments the authors have previously published in singly or jointly authored works on this and related topics, as well as various refinements to those views and some suggestive discussions that aim to show how their account of guidance control might fit into (...) a more comprehensive account of moral responsibility. (shrink)

An important discussion in contemporary ethics concerns the relevance of empirical research for ethics. Specifically, two crucial questions pertain, respectively, to the possibility of inferring normative statements from descriptive statements, and to the danger of a loss of normativity if normative statements should be based on empirical research. Here we take part in the debate and defend integrated empirical ethical research: research in which normative guidelines are established on the basis of empirical research and in which the guidelines are empirically (...) evaluated by focusing on observable consequences. We argue that in our concrete example normative statements are not derived from descriptive statements, but are developed within a process of reflection and dialogue that goes on within a specific praxis. Moreover, we show that the distinction in experience between the desirable and the undesirable precludes relativism. The normative guidelines so developed are both critical and normative: they help in choosing the right action and in evaluating that action. Finally, following Aristotle, we plead for a return to the view that morality and ethics are inherently related to one another, and for an acknowledgment of the fact that moral judgments have their origin in experience which is always related to historical and cultural circumstances. (shrink)

In the recent past a number of empirical studies provided evidence that increasing genetic knowledge leads to new forms of exclusion, disadvantage and stigmatisation. As a consequence, many states have inaugurated special legislation to fight "genetic discrimination".This article focuses on some theoretical, normative and practical problems in the scientific and political debate on genetic discrimination. It puts forward the thesis that the existing antidiscrimination approach is based on the implicit idea that genes are the essence of (human) life. Since genes (...) are held responsible for individual development and personal identity, genetic discrimination is granted a privileged legal status in comparison to other forms of discrimination. As a result the analytical and political concentration on processes of genetic discrimination may reinforce the "geneticization" of body, illness and deviance. (shrink)

This article seeks to establish that the social sciences have an important contribution to make to the study of ethics. The discussion is framed around three questions: (i) what theoretical work can the social sciences contribute to the understanding of ethics? (ii) what empirical work can the social sciences contribute to the understanding of ethics? And (iii) how does this theoretical and empirical work combine, to enhance the understanding of how ethics, as a field of analysis and debate, is socially (...) constituted and situated? Through these questions the argument goes beyond the now commonly cited objection to the over‐simplistic division between normative and descriptive ethics (that assigns the social sciences the ‘handmaiden’ role of simply providing the ‘facts’). In extending this argument, this article seeks to establish, more firmly and in more detail, that: (a) the social sciences have a longstanding theoretical interest analysing the role that a concern with ethics plays in explanations of social change, social organisation and social action; (b) the explanations that are based on the empirical investigations conducted by social scientists exemplify the interplay of epistemological and methodological analyses so that our understanding of particular substantive issues is extended beyond the conventional questions raised by ethicists, and (c) through this combination of theoretical and empirical work, social scientists go beyond the specific ethical questions of particular practices to enquire further into the social processes that lie behind the very designation of certain matters as being ‘ethical issues’. (shrink)

This book provides a comprehensive, systematic theory of moral responsibility. The authors explore the conditions under which individuals are morally responsible for actions, omissions, consequences, and emotions. The leading idea in the book is that moral responsibility is based on 'guidance control'. This control has two components: the mechanism that issues in the relevant behavior must be the agent's own mechanism, and it must be appropriately responsive to reasons. The book develops an account of both components. The authors go on (...) to offer a sustained defense of the thesis that moral responsibility is compatible with causal determinism. (shrink)

Since its origin, bioethics has attracted the collaboration of few social scientists, and social scientific methods of gathering empirical data have remained unfamiliar to ethicists. Recently, however, the clouded relations between the empirical and normative perspectives on bioethics appear to be changing. Three reasons explain why there was no easy and consistent input of empirical evidence into bioethics. Firstly, interdisciplinary dialogue runs the risk of communication problems and divergent objectives. Secondly, the social sciences were absent partners since the beginning of (...) bioethics. Thirdly, the meta‐ethical distinction between ‘is’ and ‘ought’ created a ‘natural’ border between the disciplines. Now, bioethics tends to accommodate more empirical research. Three hypotheses explain this emergence. Firstly, dissatisfaction with a foundationalist interpretation of applied ethics created a stimulus to incorporate empirical research in bioethics. Secondly, clinical ethicists became engaged in empirical research due to their strong integration in the medical setting. Thirdly, the rise of the evidence‐based paradigm had an influence on the practice of bioethics. However, a problematic relationship cannot simply and easily evolve into a perfect interaction. A new and positive climate for empirical approaches has arisen, but the original difficulties have not disappeared. (shrink)

Abstract.The United Kingdom Department of Health initiative on “The Expert Patient” (2001) reflects recent trends in political philosophy, ethics and health services research. The overall objective of the initiative is to encourage patients, particularly those suffering from chronic conditions to become more actively involved in decisions concerning their treatment. In doing so there would be (perhaps) an expectation of better patient compliance and (arguably) a resultant improvement in quality of life. Despite these anticipated beneficial influences on health outcomes, there may (...) be a danger that such initiatives are being carried along by the general swell of enthusiasm for recognising and facilitating the claims of disadvantaged or discriminated against groups. What more attractive than that patients should be “liberated” from what might be seen as the oppression of medical paternalism? To a great extent the potential for success of the Expert Patient venture turns on:(a) whether and to what extent a patient can be considered truly to be an expert and (b) full acceptance by the medical and heath care professions of allowing patients a more equitable and positive role.Whilst clearly the patient is an expert in the hermeneutic sense – it is they and they alone who experience their illness – there is nevertheless a risk of confusing experience with expertise. Experience limited to an individual does not of itself give rise to the generalisations that underlie reliable clinical treatment. Neither do the vast majority of patients possess the physiological and pharmacological knowledge to fully appreciate the biological nature of their illness nor the basis, risks or limitations of therapeutic measures. Might the notion of “The Expert Patient” as informed co-decision maker become a well-meaning but rather vacuous aspiration similar to that of informed consent? Even worse, could patient “empowerment” have a deleterious effect? The paper reviews some of the major issues and concludes that the expert patient initiative could have benefits for both patients and health professionals if operated on the basis of concordance: an informed collaborative alliance that optimises the potential benefits of medical care. (shrink)

: New genetic technologies continue to emerge that allow us to control the genetic endowment of future children. Increasingly the claim is made that it is morally "irresponsible" for parents to fail to use such technologies when they know their possible children are at risk for a serious genetic disorder. We believe such charges are often unwarranted. Our goal in this article is to offer a careful conceptual analysis of the language of irresponsibility in an effort to encourage more care (...) in its use. Two of our more important sub-claims are: A fair judgment of genetic irresponsibility necessarily requires a thick background description of the specific reproductive choice; and there is no necessary connection between an act's being morally wrong and its being irresponsible. These are distinct judgments requiring distinct justifications. (shrink)

The current explosion of genetic knowledge and the rapid proliferation of genetic tests has rightly provoked concern that we are approaching a future in which people will be labeled and disadvantaged based on genetic information. Indeed, some have already suffered harm, including denial of health insurance. This concern has prompted an outpouring of analysis. Yet almost all of it approaches the problem of genetic disadvantage under the rubric of “genetic discrimination.”This rubric is woefully inadequate to the task at hand. It (...) ignores years of commentary on race and gender demonstrating the limits of antidiscrimination analysis as an analytic framework and corrective tool. Too much discussion of genetic disadvantage proceeds as if scholars of race and gender had not spent decades critiquing and developing antidiscrimination theory.Indeed, there are multiple links among race, gender, and genetics. Dorothy Roberts has discussed the historical links between racism and genetics, while she and others have begun to map connections between gender and genetics. (shrink)

This paper discusses whether prospectiveparents ought to find out about their geneticconstitution for reproductive reasons. It isargued that ignoring genetic information can bein line with responsible parenthood or perhapseven recommendable. This is because parenthoodis essentially an unconditional project inwhich parents ought to commit themselves tonurturing any kind of child. Besides, thetraditional reasons offered for theunfortunateness of impairments and the tragicfate of families with disabled children are notconvincing. Other morally problematic outcomesof genetics, such as discrimination againstindividuals with impairments, and limiting freeparental (...) decision making, are alsoconsidered. (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)

In the mid-1970s and early 1980s, several feminist theorists began developing alternatives to the traditional methods of scientific research. The result was a new theory, now recognized as Standpoint Theory, which caused heated debate and radically altered the way research is conducted. The Feminist Standpoint Theory Reader is the first anthology to collect the most important essays on the subject as well as more recent works that bring the topic up-to-date. Leading feminist scholar and one of the founders of Standpoint (...) Theory, Sandra Harding brings together the a prestigious list of scholars--Dorothy Smith, Donna Haraway, Patricia Hill Collins, Nancy Hartsock and Hilary Rose--to not only showcase the most influential essays on the topic but to also highlight subsequent developments of these approaches from a wide variety of disciplines and intellectual and political positions. The Reader will be essential reading for feminist scholars. (shrink)

Supererogation and rules -- Problematic responsibility in law and morals -- On being "morally speaking a murderer" -- Justice and personal desert -- The expressive function of punishment -- Action and responsibility -- Causing voluntary actions -- Sua culpa -- Collective responsibility -- Crime, clutchability, and individuated treatment -- What is so special about mental illness?

In this brief concluding chapter we first wish to present the overall argument of the book in a concise, nontechnical way. We hope this will provide a clear view of the argument. We shall then point to some of the distinctive--and attractive--features of our approach. Finally, we shall offer some preliminary thoughts about extending the account of moral responsibility to apply to emotions.

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.