This article presents the results of a study that investigates the way in which carriers of a mutation on the BRCA1 or the BRCA2 gene, associated with a high risk of breast and ovarian cancer, make their reproductive decisions. Using semi-structured interviews, the study explored the way in which these persons reflected on the acceptability of taking the risk of transmitting this mutation to the next generation, the arguments they used in favor or against taking that risk, and in the (...) light of these arguments, their opinion on the acceptability of preimplantation genetic diagnosis (PGD) as a reproductive option. The findings suggest that when carriers are planning to have a(nother) child, they are mainly concerned by the risk of transmitting ‘much more than a gene’: essentially painful experiences not only with respect to health, such as undergoing cancer surveillance or combatting one’s own illness, but also with regards to family life, such as witnessing the illness and death of a close relative, encountering difficulties in finding a partner or reconsidering one’s plans to have a family. As for opinions concerning the acceptability of PGD as a reproductive option, opinions about personal recourse were varied but all expressed the understanding that PGD should be made available to those persons who consider it their best option. (shrink)

The question of ‘who owns genetic information‘ is increasingly a focus of ethical inquiry. Applied to predictive testing, several recent critiques suggest that persons with a genetic disorder have a moral duty to disclose that information to other family members. The justification for this obligation is that genetic information belongs to and may benefit not only a single individual, but also members of a biological kinship. This paper considers this issue from a different vantage point: How does gender intersect with (...) the moral duty to disclose genetic information? Scholars have argued that gender is partly comprised of distinct assignments and assumptions of responsibility. Thus, there is a danger that gendered patterns of socialization will make women feel that they should take primary responsibility for disclosing genetic information to others. This article explores issues of responsibility and disclosure of risk information by drawing on an empirical study of women and men who have undergone genetic testing for hereditary breast/ovarian cancer. The research study suggests that disclosure of genetic information is a gendered activity, with both the benefits and burdens of this task falling primarily on women. It also illustrates that when disclosure is understood contextually, it is a far more complicated matter than when viewed through a theoretical lens. The article considers the relevance of these findings on ethical debate and genetic counselling practices. (shrink)

Bioethicists tend to focus on the individual as the relevant moral subject. Yet, in highly complex and socially differentiated healthcare systems a number of social groups, each committed to a common cause, are involved in medical decisions and sometimes even try to influence bioethical discourses according to their own agenda. We argue that the significance of these collective actors is unjustifiably neglected in bioethics. The growing influence of collective actors in the fields of biopolitics and bioethics leads us to pursue (...) the question as to how collective moral claims can be characterized and justified. We pay particular attention to elaborating the circumstances under which collective actors can claim ‘collective agency.’ Specifically, we develop four normative-practical criteria for collective agency in order to determine the conditions that must be given to reasonably speak of ‘collective autonomy’. For this purpose, we analyze patient organizations and families, which represent two quite different kinds of groups and can both be conceived as collective actors of high relevance for bioethical practice. Finally, we discuss some practical implications and explain why the existence of a shared practice of trust is of immediate normative relevance in this respect. (shrink)

Childhood genetic testing raises complex ethical and moral dilemmas for both families and professionals. In the family sphere, the role of communication is a key aspect in the transmission of ‘genetic responsibility’ between adults and children. In the professional sphere, genetic responsibility is an interactional accomplishment emerging from the sometimes competing views over what constitutes the ‘best interests’ of the child in relation to parental preferences on the one hand, and professional judgements on the other. In the present paper we (...) extend our previous research into parental accounts of childhood genetic testing and explore the ethical accounts of professionals in research interviews. Interviews (n = 20) were conducted with professional practitioners involved in the genetic diagnosis and management of children and their families. We first identify four inter-related themes—juxtaposition of parental rights vis-à-vis child’s autonomy, elicitation of the child’s autonomy, avoidance of parental responsibility and recognition of professional uncertainty. Then, using Rhetorical Discourse Analysis, we examine the range of discourse devices through which ethical accounts are situationally illustrated: contrast, reported speech, constructed dialogue, character and event work. An overarching device in these ethical accounts is the use of extreme case scenarios, which reconstruct dilemmas as justifications of professional conduct. While acknowledging ambivalence, our analysis suggests that professional judgement is not a simple matter of implementing ethical principles but rather of managing the practical conditions and consequences of interactions with parents and children. We conclude that more attention is needed to understand the way professional practitioners formulate judgements about ethical practice. (shrink)

When considering the principle of medical confidentiality, disclosure of genetic information constitutes a special case because of the impact that this information can have on the health and the lives of relatives. The aim of this study is to explore the attitudes of Turkish physicians and patients about sharing information obtained from genetic tests.

Health policy sometimes hinges on claims about the responsibility borne by people or corporations for health outcomes. We don't want these claims to be arbitrary, so we construe them as discoveries of plain fact. But we're mistaken. They are interwoven with our values and social institutions. Recognizing that they are allows us to debate them more honestly and thoroughly.

Systematic reviews, which were developed to improve policy-making and clinical decision-making, answer an empirical question based on a minimally biased appraisal of all the relevant empirical studies. A model is presented here for writing systematic reviews of argument-based literature: literature that uses arguments to address conceptual questions, such as whether abortion is morally permissible or whether research participants should be legally entitled to compensation for sustaining research-related injury. Such reviews aim to improve ethically relevant decisions in healthcare, research or policy. (...) They are better tools than informal reviews or samples of literature with respect to the identification of the reasons relevant to a conceptual question, and they enable the setting of agendas for conceptual and empirical research necessary for sound policy-making. This model comprises prescriptions for writing the systematic review's review question and eligibility criteria, the identification of the relevant literature, the type of data to extract on reasons and publications, and the derivation and presentation of results. This paper explains how to adapt the model to the review question, literature reviewed and intended readers, who may be decision-makers or academics. Obstacles to the model's application are described and addressed, and limitations of the model are identified. (shrink)

In the months preceding the writing of this review, bioethics has been in the news a great deal. In congressional and public policy debates surrounding stem cell research, human cloning, and the Human Genome Project, bioethics and bioethicists have gained national attention and been subject to public scrutiny. Commentators have asked who these self-appointed moral experts are to tell us what is right and wrong.

Purpose Although the term “responsibility” plays a central role in bioethics and public health, its meaning and implications are often unclear. This paper defends the importance of a more systematic conception of responsibility to improve moral philosophical as well as descriptive analysis. Methods We start with a formal analysis of the relational conception of responsibility and its meta-ethical presuppositions. In a brief historical overview, we compare global-collective, professional, personal, and social responsibility. The value of our analytical matrix is illustrated by (...) sorting out the plurality of responsibility models in three cases (organ transplantation, advance directives, and genetic testing). Results Responsibility is a relational term involving at least seven relata. The analysis of the relata allows distinguishing between individual versus collective agency, retrospective versus prospective direction, and liability versus power relations. Various bioethical ambiguities result from insufficient, implicit, or inappropriate ascriptions of responsibility. Conclusions A systematic conception of responsibility is an important tool for bioethical reflection. It allows an in-depth understanding and critique of moral claims on a meta-ethical level without presuming one particular normative approach. Considering the concept of responsibility can also help to complement the current bioethical focus on individual autonomy by including the perspectives of other actors, such as family members or social groups. (shrink)

Purpose Although the term “responsibility” plays a central role in bioethics and public health, its meaning and implications are often unclear. This paper defends the importance of a more systematic conception of responsibility to improve moral philosophical as well as descriptive analysis. Methods We start with a formal analysis of the relational conception of responsibility and its meta-ethical presuppositions. In a brief historical overview, we compare global-collective, professional, personal, and social responsibility. The value of our analytical matrix is illustrated by (...) sorting out the plurality of responsibility models in three cases (organ transplantation, advance directives, and genetic testing). Results Responsibility is a relational term involving at least seven relata. The analysis of the relata allows distinguishing between individual versus collective agency, retrospective versus prospective direction, and liability versus power relations. Various bioethical ambiguities result from insufficient, implicit, or inappropriate ascriptions of responsibility. Conclusions A systematic conception of responsibility is an important tool for bioethical reflection. It allows an in-depth understanding and critique of moral claims on a meta-ethical level without presuming one particular normative approach. Considering the concept of responsibility can also help to complement the current bioethical focus on individual autonomy by including the perspectives of other actors, such as family members or social groups. (shrink)

In this paper, we explore and discuss the use of the concept of being affected in biomedical decision making processes in Germany. The corresponding German term ‘Betroffenheit’ characterizes on the one hand a relation between a state of affairs and a person and on the other an emotional reaction that involves feelings like concern and empathy with the suffering of others. An example for the increasing relevance of being affected is the postulation of the participation of people with disabilities and (...) chronic or acute diseases in the discourse, as partly realized in the German National Ethics Council or the Federal Joint Committee. Nevertheless, not only on the political level, the resistance against the participation of affected people is still strong; the academic debate seems to be cross-grained, too. Against this background, we explore the meaning and argumentative role of the concept of being affected as it is used by affected and lay people themselves. Our analysis is based on four focus group discussions in which lay people, patients and relatives of patients discuss their attitudes towards biomedical interventions such as organ transplantation and genetic testing. This setting allows for a comparison of how affected and non-affected people are concerned and deliberate about medical opportunities, but also of how they position themselves as being affected or non-affected with respect to (scientific) knowledge and morality. On this basis, we discuss the normative relevance of being affected for the justification of political participation. (shrink)

The professional and institutional responsibility for handling genetic knowledge is well discussed; less attention has been paid to how lay people and particularly people who are affected by genetic diseases perceive and frame such responsibilities. In this exploratory study we qualitatively examine the attitudes of lay people, patients and relatives of patients in Germany and Israel towards genetic testing. These attitudes are further examined in the national context of Germany and Israel, which represent opposite regulatory approaches and bioethical debates concerning (...) genetic testing. Three major themes of responsibility emerged from the inter-group and cross-cultural comparison: self-responsibility, responsibility for kin, and responsibility of society towards its members. National contrast was apparent in the moral reasoning of lay respondents concerning, for example, the right not to know versus the duty to know (self-responsibility) and the moral conflict concerning informing kin versus the moral duty to inform (responsibility for kin). Attitudes of respondents affected by genetic diseases were, however, rather similar in both countries. We conclude by discussing how moral discourses of responsibility are embedded within cultural (national, religious) as well as phenomenological (being affected) narratives, and the role of public engagement in bioethical discourse. (shrink)

Virginia Held assesses the ethics of care as a promising alternative to the familiar moral theories that serve so inadequately to guide our lives. The ethics of care is only a few decades old, yet it is by now a distinct moral theory or normative approach to the problems we face. It is relevant to global and political matters as well as to the personal relations that can most clearly exemplify care. This book clarifies just what the ethics of care (...) is: what its characteristics are, what it holds, and what it enables us to do. It discusses the feminist roots of this moral approach and why the ethics of care can be a morality with universal appeal. Held examines what we mean by "care," and what a caring person is like. Where other moral theories demand impartiality above all, the ethics of care understands the moral import of our ties to our families and groups. It evaluates such ties, focusing on caring relations rather than simply on the virtues of individuals. The book proposes how such values as justice, equality, and individual rights can "fit together" with such values as care, trust, mutual consideration, and solidarity. In the second part of the book, Held examines the potential of the ethics of care for dealing with social issues. She shows how the ethics of care is more promising than Kantian moral theory and utilitarianism for advice on how expansive, or not, markets should be, and on when other values than market ones should prevail. She connects the ethics of care with the rising interest in civil society, and considers the limits appropriate for the language of rights. Finally, she shows the promise of the ethics of care for dealing with global problems and seeing anew the outlines of international civility. (shrink)

Using data obtained during a retrospective interview study of 30 women who had undergone genetic testing—BRCA1/2 mutation searching—this paper describes how women, previously diagnosed with breast/ovarian cancer, perceive their role in generating genetic information about themselves and their families. It observes that when describing their motivations for undergoing DNA testing and their experiences of disclosing genetic information within the family these women provide care based ethical justifications for their actions. Finally, it argues that generating genetic information and disclosing this information (...) to kin raise different types of ethical issues. The implications of these findings for ethical debates about informed choice in the context of genetic testing are discussed. (shrink)

By the time of his death in 2006, Sir Peter Strawson was regarded as one of the world's most distinguished philosophers. First published thirty years ago but long since unavailable, _Freedom and Resentment_ collects some of Strawson's most important work and is an ideal introduction to his thinking on such topics as the philosophy of language, metaphysics, epistemology and aesthetics. Beginning with the title essay _Freedom and Resentment_, this invaluable collection is testament to the astonishing range of Strawson's thought as (...) he discusses free will, ethics and morality, logic, the mind-body problem and aesthetics. The book is perhaps best-known for its three interrelated chapters on perception and the imagination, subjects now at the very forefront of philosophical research. This reissue includes a substantial new foreword by Paul Snowdon and a fascinating intellectual autobiography by Strawson. (shrink)

The privacy concerns discussed in the 1990s in relation to the New Genetics failed to anticipate the relevant issues for individuals, families, geneticists and society. Consumers, for example, can now buy their personal genetic information and share it online. The challenges facing genetic privacy have evolved as new biotechnologies have developed, and personal privacy is increasingly challenged by the irrepressible flow of electronic data between the personal and public spheres and by surveillance for terrorism and security risks. This book considers (...) the right to know and the right not to know about your own and others’ genomes. It discusses new privacy concerns and developments in ethical thinking, with the greater emphasis on solidarity and equity. The multidisciplinary approach covers current topics such as biobanks and forensic databases, DIY testing, group rights and accountability, the food we eat and the role of the press and the new digital media. (shrink)

This book, written by four internationally renowned bioethicists and first published in 2000, was the first systematic treatment of the fundamental ethical issues underlying the application of genetic technologies to human beings. Probing the implications of the remarkable advances in genetics, the authors ask how should these affect our understanding of distributive justice, equality of opportunity, the rights and obligations as parents, the meaning of disability, and the role of the concept of human nature in ethical theory and practice. The (...) book offers a historical context to contemporary debate over the use of these technologies by examining the eugenics movement of the late nineteenth and early twentieth centuries. The questions raised in this book will be of interest to any reflective reader concerned about science and society and the rapid development of biotechnology, as well as to professionals in such areas as philosophy, bioethics, medical ethics, health management, law, and political science. (shrink)

In this retitled and revised version of Harris's original text Wonderwoman and Superman, the author discusses the ethics of human biotechnology and its implications relative to human evolution and destiny.

Virginia Held assesses the ethics of care as a promising alternative to the familiar moral theories that serve so inadequately to guide our lives. The ethics of care is only a few decades old, yet it is by now a distinct moral theory or normative approach to the problems we face. It is relevant to global and political matters as well as to the personal relations that can most clearly exemplify care. This book clarifies just what the ethics of care (...) is: what its characteristics are, what it holds, and what it enables us to do. It discusses the feminist roots of this moral approach and why the ethics of care can be a morality with universal appeal. Held examines what we mean by "care," and what a caring person is like. Where other moral theories demand impartiality above all, the ethics of care understands the moral import of our ties to our families and groups. It evaluates such ties, focusing on caring relations rather than simply on the virtues of individuals. The book proposes how such values as justice, equality, and individual rights can "fit together" with such values as care, trust, mutual consideration, and solidarity. In the second part of the book, Held examines the potential of the ethics of care for dealing with social issues. She shows how the ethics of care is more promising than Kantian moral theory and utilitarianism for advice on how expansive, or not, markets should be, and on when other values than market ones should prevail. She connects the ethics of care with the rising interest in civil society, and considers the limits appropriate for the language of rights. Finally, she shows the promise of the ethics of care for dealing with global problems and seeing anew the outlines of international civility. (shrink)

In her long-awaited Responsibility for Justice, Young discusses our responsibilities to address "structural" injustices in which we among many are implicated, often by virtue of participating in a market, such as buying goods produced in sweatshops, or participating in booming housing markets that leave many homeless.

Recent developments in biotechnology and genetic research are raising complex ethical questions concerning the legitimate scope and limits of genetic intervention. As we begin to contemplate the possibility of intervening in the human genome to prevent diseases, we cannot help but feel that the human species might soon be able to take its biological evolution in its own hands. 'Playing God' is the metaphor commonly used for this self-transformation of the species, which, it seems, might soon be within our grasp. (...) In this important new book, Jurgen Habermas - the most influential philosopher and social thinker in Germany today - takes up the question of genetic engineering and its ethical implications and subjects it to careful philosophical scrutiny. His analysis is guided by the view that genetic manipulation is bound up with the identity and self-understanding of the species. We cannot rule out the possibility that knowledge of one's own hereditary factors may prove to be restrictive for the choice of an individual's way of life and may undermine the symmetrical relations between free and equal human beings. In the concluding chapter - which was delivered as a lecture on receiving the Peace Prize of the German Book Trade for 2001 - Habermas broadens the discussion to examine the tension between science and religion in the modern world, a tension which exploded, with such tragic violence, on September 11th. (shrink)

The doyen of living English philosophers, by these reflections, took hold of and changed the outlook of a good many other philosophers, if not quite enough. He did so, essentially, by assuming that talk of freedom and responsibility is talk not of facts or truths, in a certain sense, but of our attitudes. His more explicit concern was to look again at the question of whether determinism and freedom are consistent with one another -- by shifting attention to certain personal (...) rather than moral attitudes, first of all gratitude and resentment. In the end, he arrived at a kind of Compatibilist or, as he says, Optimist conclusion. That is no doubt a recommendation but not the largest recommendation of this splendidly rich piece of philosophy. (shrink)

This book, written by four internationally renowned bioethicists and first published in 2000, was the first systematic treatment of the fundamental ethical issues underlying the application of genetic technologies to human beings. Probing the implications of the remarkable advances in genetics, the authors ask how should these affect our understanding of distributive justice, equality of opportunity, the rights and obligations as parents, the meaning of disability, and the role of the concept of human nature in ethical theory and practice. The (...) book offers a historical context to contemporary debate over the use of these technologies by examining the eugenics movement of the late nineteenth and early twentieth centuries. The questions raised in this book will be of interest to any reflective reader concerned about science and society and the rapid development of biotechnology, as well as to professionals in such areas as philosophy, bioethics, medical ethics, health management, law, and political science. (shrink)