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)

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)

Few subjects have generated so many newspaper headlines and such heated controversy as the treatment, or non-treatment, of handicapped newborns. In 1982, the case of Baby Doe, a child born with Down's syndrome, stirred up a national debate in the United States, while in Britain a year earlier, Dr. Leonard Arthur stood trial for his decision to allow a baby with Down's syndrome to die. Government intervention and these recent legal battles accentuate the need for a reassessment of the complex (...) issues involved. This volume--by two authorities on medical ethics--presents a philosophical analysis of the subject based on particular case studies. Addressing the doctrine of the absolute sanctity of life, Singer and Kuhse examine some actual cases where decisions have been reached; consider the criteria for making these decisions; investigate the differences between killing and letting die; compare Western attitudes and practices with those of other cultures; and conclude by proposing a decision-making framework that offers a rational alternative to the polemics and confusion generated by this highly controversial topic. (shrink)

Thomas Murray's graceful and humane book illuminates one of the most morally complex areas of everyday life: the relationship between parents and children. What do children mean to their parents, and how far do parental obligations go? What, from the beginning of life to its end, is the worth of a child? Ethicist Murray leaves the rarefied air of abstract moral philosophy in order to reflect on the moral perplexities of ordinary life and ordinary people. Observing that abstract moral terms (...) such as altruism and selfishness can be buried in the everyday doings of families, he maintains that ethical theory needs a richer description than it now has of the moral life of parents and children. How far should adults go in their quest for children? What options are available to women who do not want to bear a child now? Should couples be allowed to reject a child because of genetic disability or "wrong" gender? How can we weigh the competing claims of the genetic and the rearing parents to a particular child? _The Worth of a Child_ couples impressive learning with a conversational style. Only by getting down to cases, Murray insists, can we reach moral conclusions that are unsentimental, farsighted, and just. In an era of intense public and private acrimony about the place and meaning of "family values," his practical wisdom about extraordinary difficult moral issues offers compelling reading for both experienced and prospective parents, as well as for ethicists, social and behavioral scientists, and legal theorists. (shrink)

The Future of Human Reproduction brings together new work, by an international group of contributors from various fields and perspectives, on ethical, social, and legal issues raised by recent advances in reproductive technology. These advances have put us in a position to choose what kindsof children and parents there should be; the aim of the essays is to illuminate how we should deal with these possibilities for choice. Topics discussed include gender and race selection, genetic engineering, fertility treatment, ovarian tissue (...) transfer, and post-menopausal pregnancy. The centralfocus of the volume is the interface between reproductive choice and public regulation. (shrink)

Moral and social arguments weigh heavily against performing medical procedures solely for purposes of sex selection. The medical profession has a responsibility to abandon its posture of ethical neutrality and take a firm stand now against sex selection.

As the range of conditions for which we can test prenatally expands, society and the medical profession need to develop guidelines about which tests ought to be offered and which ought not to be. Notions of fetal privacy and confidentiality can help to define limits to what parents may reasonably learn about their future child.

Preimplantation genetic diagnosis (PID) is often seen as an improvement upon prenatal testing. I argue that PID may exacerbate the eugenic features of prenatal testing and make possible an expanded form of free-market eugenics. The current practice of prenatal testing is eugenic in that its aim is to reduce the numbers of people with genetic disorders. Due to social pressures and eugenic attitudes held by clinical geneticists in most countries, it results in eugenic outcomes even though no state coercion is (...) involved. I argue that technological advances may soon make PID widely accessible. Because abortion is not involved, and multiple embryos are available, PID is radically more effective as a tool of genetic selection. It will also make possible selection on the basis of non-pathological characteristics, leading, potentially, to a full-blown free-market eugenics. For these reasons, I argue that PID should be strictly regulated. (shrink)

Testing embryonic cells for genetic abnormalities gives us the capacity to predict whether and to what extent people will exist with disease and disability. Moreover, the freezing of embryos for long periods of time enables us to alter the length of a normal human lifespan. After highlighting the shortcomings of somatic‐cell gene therapy and germ‐line genetic alteration, I argue that the testing and selective termination of genetically defective embryos is the only medically and morally defensible way to prevent the existence (...) of people with severe disability, pain and suffering that make their lives not worth living for them on the whole. In addition, I consider the possible harmful effects on children born from frozen embryos after the deaths of their biological parents, or when their parents are at an advanced age. I also explore whether embryos have moral status and whether the prospects for disease‐preventing genetic alteration can justify long‐term cryopreservation of embryos. (shrink)

New uses of preimplantation genetic diagnosis to screen embryos prior to transfer raise ethical, legal, and policy issues that deserve close attention. Extensions for medical purposes, such as to identify susceptibility genes, late onset disease, and human leukocyte antigen matching, are usually ethically acceptable. Whether embryo screening for gender, perfect pitch, or other non-medical characteristics are also acceptable depends upon the parental needs served and the harm posed to embryos, children, and society. Speculations about potential future uses of PGD should (...) not prevent otherwise acceptable current uses of PGD. (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)

The prelims comprise: Introduction Better Alternative Than Abortion? The Morality of Prenatal Diagnosis Prenatal Genetic Testing as Prevention The Line‐drawing Question Conclusion Note.

This article presents a set of moral arguments regarding the selective abortion of fetuses on the basis of prenatal screening for late onset genetic diseases only, and for Huntington's Disease* in particular. After discussion of human suffering, human perfection and the distinctive features of the lives of people confronting late onset genetic disease, the author concludes that selective abortion is difficult to justify ethically, although it must remain a matter of personal choice.

Preimplantation genetic diagnosis (PGD) is available where there is a 'significant risk of a serious genetic condition being present in the embryo', the criteria established by the Human Fertilisation and Embryology Authority (HFEA) and Human Genetics Commission (HGC). There are a number of controversies about this practice, notably to what extent people can agree on the term 'serious' and whether 'serious' should only mean 'serious for the possible child' or whether it might also, or sometimes instead, mean 'serious for the (...) prospective parents'. This paper moves into different controversial territory by considering the scope of reproductive autonomy beyond selection against serious genetic conditions. Here I consider the argument that parents might actually be morally required to select children with what are sometimes called 'enhanced' features or traits to select 'the best' as this has been described. Reflection on the realities and costs of an attempt to use in vitro fertilization (IVF) and PGD to select 'the best' possible child rebuts the argument in favour of any such 'maximizing' duty on behalf of prospective parents. (shrink)

Thomas Murray's graceful and humane book illuminates one of the most morally complex areas of everyday life: the relationship between parents and children. What do children mean to their parents, and how far do parental obligations go? What, from the beginning of life to its end, is the worth of a child? Ethicist Murray leaves the rarefied air of abstract moral philosophy in order to reflect on the moral perplexities of ordinary life and ordinary people. Observing that abstract moral terms (...) such as altruism and selfishness can be buried in the everyday doings of families, he maintains that ethical theory needs a richer description than it now has of the moral life of parents and children. How far should adults go in their quest for children? What options are available to women who do not want to bear a child now? Should couples be allowed to reject a child because of genetic disability or "wrong" gender? How can we weigh the competing claims of the genetic and the rearing parents to a particular child? _The Worth of a Child_ couples impressive learning with a conversational style. Only by getting down to cases, Murray insists, can we reach moral conclusions that are unsentimental, farsighted, and just. In an era of intense public and private acrimony about the place and meaning of "family values," his practical wisdom about extraordinary difficult moral issues offers compelling reading for both experienced and prospective parents, as well as for ethicists, social and behavioral scientists, and legal theorists. (shrink)

Health-related quality of life is the ultimate general goal for medicine, health care and public health, including health promotion and health education. The other important general goal is health-related welfare. The aim of the paper is to explain what this means and what the consequences of these assumptions are for health work. This involves defining the central terms “health”, “quality of life” and “welfare” and showing what their conceptual relations are. Health-related quality of life has two central meanings: health-related well-being, (...) which constitutes quality of life, and health as ability, which contributes causally to quality of life. Four meanings of health-related welfare are put forward: general well-being, health as ability, other inner properties of the individual, and external factors. States and processes covered by these categories contribute causally to health-related quality of life. Finally, using these distinctions, some more specific goals for medicine and health care, on the one hand, and for public health and health promotion, on the other, are outlined. In the former fields work is primarily directed towards changing the health-related quality of life of the individual through direct measures, “manipulating” the individual, whereas public health work and health promotion primarily use indirect measures and further health through various sorts of health-related welfare changes, e.g. through changing the environment. (shrink)