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.
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 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.
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.
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)
Applied ethics, a subdiscipline of philosophy, lends itself to an encyclopedia format because of the many industries and intellectual fields that it encompasses. The Encyclopedia of Applied Ethics is based on twelve major categories, such as Biomedical Ethics and Environmental Ethics. Religious traditions that embody normative beliefs, as well as classical theories of ethics, are explored in a non-judgmental manner. Each of the twelve categories is divided into discrete areas that are covered by 5,000-6,000 word articles. Each of the 281 (...) articles begins with a definition of the subject and includes a table of contents, glossary of key terms, and bibliography. Second- and third- level headings, boxes, sidebars, and the like emphasize the reference-oriented nature of the material. The four volumes are arranged in an A-Z format, with a complete subject index at the end of the last volume. Articles are written by international experts, arranged alphabetically by title, not by subject, and cross-referenced so the reader can locate relevant information in other articles. One of Library Journal's Best Reference Sources for 1997! One of the CHOICE Outstanding Academic Books for 1998! Cross-references appear in each article to refer readers to related information A glossary and bibliography in each article provide readers with tools for learning and creative thinking. (shrink)
The question of what counts as a successful outcome of the process of genetics counselling has recently become central because of the increasing calls for efficiency in health care, and for means of measuring efficiency. Angus Clarke has drawn attention to this trend, and has argued against both a measure in terms of the number of terminations of pregnancy performed as a result of counselling, and an assessment in terms of the contribution of genetics counselling to a national eugenics policy. (...) He suggests instead a measure of workload. There are good arguments for supporting Clarke's position up to a point. In looking for an appropriate measure, much turns on how genetics counselling is defined. It is here understood in the context of an autonomy model of health care. It is argued that there is a contradiction between such an interpretation and the termination measure of outcome. The political philosophy underlying this outcome is also defective. Workload is not sufficient as a measure of outcome however; it is essential to look at the proper goals of an activity. It is argued that these must be connected in some way with the genetic health of the population; that the promotion of reproductive autonomy itself is not sufficient as a goal. The concern for genetic health, however, is interpreted in a way that avoids Clarke's concerns about a national eugenics policy. (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 aim of this paper is to demonstrate that there are significant ethical problems with nonmedical sex selection, and that prohibitive legislation is justified. The central argument put forward is that nonmedical sex selection is a sexist practice which promotes socially restrictive conceptions of sex, gender and family. Several steps are taken to justify this position: background information on technology and legislation is provided, the neoliberal position that is supportive of nonmedical sex selection is described, and preliminary reasons for rejecting (...) this approach are given. A detailed description of how a harm/benefit based analysis contributes to the argument against nonmedical sex selection, and how it successfully counters most criticism, is provided. The paper concludes by suggesting that virtue ethics further strengthens the moral argument against nonmedical sex selection. (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)
Preimplantation genetic diagnosis (PIGD) goes some way to meeting the clinical, psychological and ethical problems of antenatal testing. We should guard, however, against the assumption that PIGD is the answer to all our problems. It also presents some new problems and leaves some old problems untouched. This paper will provide an overview of how PIGD meets some of the old problems but will concentrate on two new challenges for ethics (and, indeed, law). First we look at whether we should always (...) suppose that it is wrong for a clinician to implant a genetically abnormal zygote. The second concern is particularly important in the UK. The Human Fertilisation and Embryology Act (1990) gives clinicians a statutory obligation to consider the interests of the future children they help to create using in vitro fertilisation (IVF) techniques. Does this mean that because PIGD is based on IVF techniques the balance of power for determining the best interests of the future child shifts from the mother to the clinician? (shrink)
Screening programmes are becoming increasingly popular since prevention is considered 'better than cure'. While earlier diagnosis may result in more effective treatment for some, there will be consequent harm for others due to anxiety, stigma, side-effects etc. A screening test cannot guarantee the detection of all 'abnormal' cases, therefore there will be false reassurance for some. A proper consideration of the potential benefit and harm arising from screening may lead to the conclusion that the programme should not be offered. A (...) modified utilitarian approach may be used for allocation of scarce resources in health care. Ethics has an important role in this evaluation. (shrink)
In the United Kingdom, the debate about how best to meet the shortfall of organs for transplantation has persisted on and off for many years. It is often presumed that the answer is simply to alter the law to a system of presumed consent. Acting perhaps on that presumption in his annual report launched in July, the Chief Medical Officer, Sir Liam Donaldson, advocated a system of organ donation based on presumed consent, the so-called “opt-out” system.1 He is calling for (...) a change in the law in England and Wales whereby consent to organ donation is presumed, making a person’s organs automatically available for transplantation after death, unless they registered objections to this while alive. Subsequently, the British Medical Association lent its support to the introduction of such a system.2 The BMA contends that “the practice of presumed consent legislation has had a significant effect on the number of cadaveric donors per million population.”2It is often taken for granted that there must be a correlation between the enactment of legislation on presumed consent and an increase in organ donation and procurement. However, the correlation is not as straightforward as it might seem. It may be that other practical measures to encourage organ donation could be implemented without changing the Human Tissue Act 2004, an Act which has been in force for barely a year.An analysis by Abadie and Gay demonstrated that “presumed consent legislation has a positive and sizeable effect on organ donation rates”,3 but they themselves admitted that the correlation between rates of donation and presumed consent legislation is “not completely unequivocal”.3 It is true that among the most successful cases in procurement rates are countries with presumed consent legislation . However, since some of the …. (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)
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 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)
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)
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)
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)
This book examines the ethical concepts which lie at the heart of journalism, including freedom, democracy, truth, objectivity, honesty and privacy. The common concern of the authors is to promote ethical conduct in the practice of journalism, as well as the quality of the information that readers and audience receive from the media.
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.
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.
Three recent reports on genetic screening published in the United Kingdom, Denmark and the Netherlands are discussed. Comparison of the Dutch report with the Danish and the Nuffield reports reveals that the Dutch report focuses on the aim of enlarging the scope for action, emphasising protection of autonomy and self-determination of the screenee more than the other two reports. The three reports have in common that the main concern is with concrete issue such as stigmatisation, discrimination, protection of the private (...) sphere and issues linked with labour and insurance. Some potential long term consequences, however, tend to be neglected or underestimated. These omissions are pointed out. (shrink)
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 food. Food has occasionally caught the attention of philosophers and bioethicists 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. 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)
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)
BackgroundGlobal collaboration in genomic research is increasingly both a scientific reality and an ethical imperative. This past decade has witnessed the emergence of six new, interconnected areas of ethical consensus and emphasis for policy in genomics: governance, security, empowerment, transparency, the right not to know, and globalization.DiscussionThe globalization of genomic research warrants an approach to governance policies grounded in human rights.SummaryA human rights approach activates the ethical principles underpinning genomic research. It lends force to the right of all citizens to (...) benefit from scientific progress, and to the right of all scientists to be recognized for their contributions. (shrink)
_Gender issues arise in relation to the human genome across a number of dimensions: the level of attention given to the nuclear genome as opposed to the mitochondrial; the level of basic scientific research; decision-making in the clinic related to both reproductive decision-making on the one hand, and diagnostic and predictive testing on the other; and wider societal implications. Feminist bioethics offers a useful perspective for addressing these issues._.
This book examines the ethical concepts which lie at the heart of journalism, including freedom, democracy, truth, objectivity, honesty and privacy. The common concern of the authors is to promote ethical conduct in the practice of journalism, as well as the quality of the information that readers and audience receive from the media.
Looks at ethical procedure in the choices and decisions made by nurses with regard to such questions as obeying doctors, covering up of a colleague's mistakes, recent developments in foetal surgery and whether the nurse's advocate role is tenable in practice. These questions are taken from the personal case studies recounted by 450 nurses in Britain and North America. The issues are to be found in many hospital situations and are faced in day-to-day practice by student and qualified nurses. A (...) commentary is provided on the ethical principles involved. (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.
This authoritative Handbook brings together experts with backgrounds in philosophy, sociology, law, public policy and the health professions and reflects the increasing impact of globalization and the dynamic advances in the fields of ...
