Genetic research has moved from Mendelian genetics to sequence maps to the study of natural human genetic variation at the level of the genome. This past decade of discovery has been accompanied by a shift in emphasis towards the ethical principles of reciprocity, mutuality, solidarity, citizenry and universality.
Genetic database initiatives have given rise to considerable debate about their potential harms and benefits. The question arises as to whether existing ethical frameworks are sufficient to mediate between the competing interests at stake. One approach is to strengthen mechanisms for obtaining informed consent and for protecting confidentiality. However, there is increasing interest in other ethical frameworks, involving solidarity — participation in research for the common good — and the sharing of the benefits of research.
This paper explores some ways in which Immanuel Kant’s ethical theory can be brought to bear on professional and health care ethics. Health care professionals are not mere individuals acting upon their own ends. Rather, their principles of action must be defined in terms of participation in a cooperative endeavor. This generates complex questions as to how well their roles mesh with one another and whether they comprise a well-formed collective agent. We argue that Kant’s ethics therefore, and perhaps surprisingly, (...) requires us to consider the institutions, procedures, and politics that decide who should play what part in a complex collective enterprise. Likewise, professional responsibility involves – alongside a readiness to play one’s individual part – a concern for these collective aspects of healthcare. (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 quotation from the London Review of Books is an example of a turn—a different way of looking at things that involves a redefinition of the kind of thing higher education is and how it should be provided. It is a turn away from a public good perspective—the opposite, it might be said, of the kind of turn addressed in this article.
The term “globalization” was popularized by Marshall McLuhan in War and Peace in the Global Village. In the book, McLuhan described how the global media shaped current events surrounding the Vietnam War  and also predicted how modern information and communication technologies would accelerate world progress through trade and knowledge development. Globalization now refers to a broad range of issues regarding the movement of goods and services through trade liberalization, and the movement of people through migration. Much has also been (...) written on the global effects of environmental degradation, population growth, and economic disparities. In addition, the pace of scientific development has accelerated, with both negative and positive implications for global health. Concerns for national health transcend borders, with a need for shared human security and an enhanced role for international cooperation and development . These issues have significant bioethical implications, and thus a renewed academic focus on the ethical dimensions of public health is needed. Future developments in science and health policy also require a firm grounding in bioethical principles. These core principles include beneficence; nonmaleficence ; respect for persons and human dignity ; and attention to equity and social justice. According to the World Health Organization , global ethical approaches should monitor and update ethical norms for research, as necessary; anticipate ethical implications of advances in science and technology for health; apply internationally accepted codes of ethics; ensure that agreed standards guide future work on the human genome; and ensure that quality in health systems and services is assessed and promoted. (shrink)
In this paper we will examine some ethical aspects of the role that computers and computing increasingly play in new genetics. Our claim is that there is no new genetics without computer science. Computer science is important for the new genetics on two levels: from a theoretical perspective, and from the point of view of geneticists practice. With respect to , the new genetics is fully impregnate with concepts that are basic for computer science. Regarding , recent developments in the (...) Human Genome Project have shown that computers shape the practices of molecular genetics; an important example is the Shotgun Method's contribution to accelerating the mapping of the human genome. A new challenge to the HGP is provided by the Open Source Philosophy , which is another way computer technologies now influence the shaping of public policy debates involving genomics. (shrink)
Recent discussions of genomics and international justice have adopted the concept of ‘global public goods’ to support both the view of genomics as a benefit and the sharing of genomics knowledge across nations. Such discussion relies on a particular interpretation of the global public goods argument, facilitated by the ambiguity of the concept itself. Our aim in this article is to demonstrate this by a close examination of the concept of global public goods with particular reference to its use in (...) the context of genomic databases. We contend that the argument for construing genomics as a global public good depends on seeing it as a natural good by focusing on features intrinsic to genomics knowledge. We shall argue that social and political arrangements are relevant and that recognising this opens the door to construing the use of global public goods language as a strategic one. (shrink)
The demand for bodily parts such as organs is increasing, and individuals in certain circumstances are responding by offering parts of their bodies for sale. Is there anything wrong in this? Kant had arguments to suggest that there is, namely that we have duties towards our own bodies, among which is the duty not to sell parts of them. Kant's reasons for holding this view are examined, and found to depend on a notion of what is intrinsically degrading. Rom Harré's (...) recent revision of Kant's argument, in terms of an obligation to preserve the body's organic integrity, is considered. Harré's view does not rule out all acts of selling, but he too ultimately depends on a test of what is intrinsically degrading. Both his view and Kant's are rejected in favour of a view which argues that it does make sense to speak of duties towards our own bodies, grounded in the duty to promote the flourishing of human beings, including ourselves. This provides a reason for opposing the sale of bodily parts, and the current trend towards the market ethic in health care provision. (shrink)
Many have complained that Kant’s ethics provides little specific guidance as to how we should act. In contemporary healthcare, professionals act in large-scale organizational contexts, with complex reward structures, and in many cases belong to professional bodies that determine the ethical obligations associated with particular roles.
The possibilities of genetic engineering, particularly as applied to human beings, have provoked considerable debate for over two decades, but more recently the focus of public concern, at least, has turned to genetically modified (GM) food. Food has occasionally caught the attention of philosophers (Telfer, 1996) and bioethicists (Mepham, 1996) but is now ripe for further attention in the light of the implications of GM for policy in health, economics and politics. Macer has identified opposing reactions to novel foods—to prefer (...) to eat down the food chain, on the one hand, and to embrace technology, on the other (Macer, 1997). One question that has given rise to some interest is why consumer attitudes to genetically modified food have been so much more strongly adverse in Europe, particularly in the UK, than in the USA. This paper explores the ways in which the food ethics debate has been constructed in recent debates in the UK, with special reference to the similarities to and differences from what are on the face of it analogous debates in medical ethics. What is special about food, as opposed to drugs, which makes it appropriate or inappropriate to construct the arguments in the terms that currently predominate? This will involve looking in particular at the application of the principle of autonomy and the argument from consumer choice. (shrink)
Analysis and comparison of genetic screening programs shows that the extent of development of programs varies widely across Europe. Regional variations are due not only to genetic disease patterns but also reflect the novelty of genetic services. In most countries, the focus for genetic screening programs has been pregnant women and newborn children. Newborn children are screened only for disorders which are treatable. Prenatal screening when provided is for conditions for which termination may be offered. The only population screening programs (...) for adults are those for thalassaemia carrier status in Cyprus, Greece and Italy. Social responses to genetic screening range from acceptance to hostility. There is a fundamental tension between individual and communi ty in the debates in various European countries about implementation of screening programs. Opposition to genetic screening is frequently expressed in terms of arguments about "eugenics" with insufficient regard to the meaning of the term and its implications. Only a few countries have introduced explicit legislation on genetic screening. Legislation to address discrimination may provide more safeguards than legislation protecting genetic information itself. (shrink)
A collection celebrating some of the best essays from the Blackwell journals, Bioethics and Developing World Bioethics. Contributors include Helga Kuhse, Michael Selgelid and Baroness Mary Warnock, former Chair of the British Government’s Committee of Inquiry into Human Fertilization and Embryology’s. Traces some of the most important concerns of the 1980s, such as the ethics of euthanasia, reproductive technologies, the allocation of scarce medical resources, surrogate motherhood, through to a range of new issues debated today, particularly in the field of (...) genetics. Includes contributions that are still as hotly debated today as they were 20 years ago and serves as a salutary reminder that free and open discussion is vital to the health of the discipline itself. Includes eight sections comprising some of the journals' best publications in methodological issues, the health care professional-patient relationship, public health ethics, research ethics, genetics, as well as beginning- and end-of-life issues. Will serve the academic bioethicists as well as students of bioethics as an excellent source book. (shrink)
Medicine is said to be moving rapidly down the road towards personalization, but it is not entirely clear how we are to understand this term, or its implications for ethics. In understanding the concept of personalized medicine there are multiple possible interpretations of ‘personalization’ at stake. These may in turn presuppose different concepts of ‘person’, with resulting variations in the ethical implications.
The term “industrial action” includes any noncooperation with management, such as strict “working to rule,” refusal of certain duties, going slow, and ultimately withdrawal of labor. The latter form of action, striking, has posed particular problems for professional ethics, especially in those professions that provide healthcare, because of the potential impact on patients' well-being. Examination of the issues, however, displays a difference in response between the healthcare professions, in particular between doctors and nurses. In considering the ethics of industrial (especially (...) strike) action there are various aspects of professional ethics to consider: (1) whether there is a tension between industrial action and the very notion of professional ethics; (2) what specific issues arise in the case of healthcare professions; (3) what, if anything, can explain and/or justify different responses from the medical and nursing professions? (shrink)
In this revised edition with a new preface from the editor, leading scientists explain the nature and goals of `test tube' reproduction and genetic engineering, and their eugenic implications. In contrast to the Warnock report, the extended commentary considers the issues in the context of a social ethic rather than the individualist viewpoint.
Every body cell of an animal or human being contains the same complete set of genes. In theory any of these cells can be used to start a new embryo. The technique has been employed in the case of frogs. The nucleus is taken out of a body cell of a frog and implanted in an enucleated frog's egg. The resulting egg cell is stimulated to develop into a normal frog, and will be an exact copy of that frog which (...) provided the nucleus with all the genetic information. In normal sexual reproduction, two parents each contribute half their genes, but in the case of cloning, one parent passes on all his or her genes. (shrink)
Proposals for an ethical code for scientists raise questions about the usefulness of the framework of professional ethics for debating relevant issues surrounding ethics and science. Is science a profession and if so should its professional ethic be self-derived or subject to external input? What needs to be addressed is the nature of the 'good' that science promotes. Explanations of science as a public good in terms of knowledge and diversity are possibilities, but science's answer to the basic philosophical question (...) of hope in the human condition should not be overlooked. (shrink)
Issues arising in connection with genes and nutrition policy include both nutrigenomics and nutrigenetics. Nutrigenomics considers the relationship between specifc nutrients or diet and gene expression and, it is envisaged, will facilitate prevention of diet-related common diseases. Nutrigenetics is concerned with the effects of individual genetic variation on response to diet, and in the longer term may lead to personalised dietary recommendations. It is important also to consider the surrounding context of other issues such as novel and functional foods in (...) so far as they are related to genetic modification. Ethical issues fall into a number of categories: why nutrigenomics? Will it have important public health benefits? questions about research, e.g. concerning the acquisition of information about individual genetic variation; questions about who has access to this information, and its possible misuse; the applications of this information in terms of public health policy, and the negotiation of the potential tension between the interests of the individual in relation to, for example, prevention of conditions such as obesity and allergy; the appropriate ethical approach to the issues, e.g. the moral difference, if any, between therapy and enhancement in relation to individualised diets; whether the 'technological fix' is always appropriate, especially in the wider context of the purported lack of public confidence in science, which has special resonance in the sphere of nutrition. (shrink)
Issues about communication in genomics have moved out of the clinic and into the public arena. Scientists other than clinicians are confronted by calls for public engagement. Genomics gives rise to these demands partly because it inevitably raises the three basic questions of philosophy as outlined by Kant: What can I know? What ought I to do? What may I hope? Genomics on its own cannot answer these questions. In relation to what can be known, its answer is at best (...) partial. Nor can the ought question be settled by science. In fact, science is criticized for reducing options while claiming to be neutral in the pursuit of knowledge. The answer to the ought question is crucially related to the hope question in so far as this deals with issues about the point of human life generally. The role of public engagement in relation to all these questions may have different objectives. It is argued that there is more of a place for it in relation to the hope question than is commonly recognized, and in particular with regard to the role of science, which could benefit from developing a service ideal in the sense found in discussions of professional ethics. (shrink)
In addition to thinking about the meanings of solidarity, it is important to address how solidarity of the appropriate sort can be cultivated. Possibilities include the transformative power of key individuals or events; and the role of institutions. In health care it is suggested that a combination of the two strategies is required. Professional conduct includes not only acting in 'face to face' delivery, but also engaging with those institutions which enable or disable certain ways of acting, so that they (...) are constantly subject to revision to ensure that they facilitate the provision of decent healthcare. (shrink)
In this article I shall examine the concept of professional ethics with reference to three headings: how we should understand the notion of a profession; how we should characterize the problems of professional ethics; and whether we should develop professional ethics from a standpoint internal or external to the profession. I shall then proceed to speculate on the future of professional ethics with reference to each of these headings, having regard to the trends identified.
The project Euroscreen 2 has examined genetic screening and testing with particular reference to implications for insurance, commercialization through marketing of genetic tests direct to the public, and issues surrounding raising public awareness of these and other developments in genetics, including the practical experiment of a Gene Shop. This paper provides a snapshot of the three year project. The study groups work included monitoring developments in different European countries and exploring possibilities for regulation in insurance and commercialization together with public (...) attitudes to regulation. The success or failure of different strategies is not independent of public awareness. Exploration of policy, however, also requires examination of fundamental concepts such as solidarity and geneticization. (shrink)
Issues in genetics and genomics have been centre stage in Bioethics for much of its history, and have given rise to both negative and positive imagined futures. Ten years after the completion of the Human Genome Project, it is a good time to assess developments. The promise of whole genome sequencing of individuals requires reflection on personalization, genetic determinism, and privacy.