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)

Reprogenetic technologies, which combine the power of reproductive techniques with the tools of genetic science and technology, promise prospective parents a remarkable degree of control to pick and choose the likely characteristics of their offspring. Not only can they select embryos with or without particular genetically-related diseases and disabilities but also choose embryos with non-disease related traits such as sex. -/- Prominent authors such as Agar, Buchanan, DeGrazia, Green, Harris, Robertson, Savulescu, and Silver have flocked to the banner of reprogenetics. (...) For them, increased reproductive choice and reduced suffering through the elimination of genetic disease and disability are just the first step. They advocate use of these technologies to create beings who enjoy longer and healthier lives, possess greater intellectual capacities, and are capable of more refined emotional experiences. Indeed, Harris and Savulescu in particular take reprogenetic technologies to be so valuable to human beings that they have insisted that their use is not only morally permissible but morally required. -/- Rethinking Reprogenetics challenges this mainstream view with a contextualised, gender-attentive philosophical perspective. De Melo-Martín demonstrates that you do not have to be a Luddite, social conservative, or religious zealot to resist the siren song of reprogenetics. Pointing out the flawed nature of the arguments put forward by the technologies' proponents, Rethinking Reprogenetics reveals the problematic nature of the assumptions underpinning current evaluations of these technologies and offers a framework for a more critical and skeptical assessment. (shrink)

Expanded universal carrier screening (EUCS) entails a population‐wide screening offer for multiple disease‐causing mutations simultaneously. Although there is much debate about the conditions under which EUCS can responsibly be introduced, there seems to be little discussion about its aim: providing carrier couples with options for autonomous reproductive choice. While this links in with current accounts of the aim of foetal anomaly screening, it is different from how the aim of ancestry‐based carrier screening has traditionally been understood: reducing the disease burden (...) in the population. The reasons why the aim of EUCS is presented in terms of ‘autonomy’ rather than ‘prevention’ have not been spelled out in the literature. This paper seeks to fill this gap by considering the morally relevant similarities and dissimilarities between foetal anomaly screening, ancestry‐based carrier screening and EUCS. When carrier screening is performed in the prenatal period, enhancing autonomy appears the most appropriate aim of EUCS, as the alternative of ‘prevention through selective abortion’ would urge women to terminate wanted pregnancies. However, when screening is conducted in the preconception period, carrier couples can avoid the birth of affected children by other means than selective abortion, for instance preimplantation genetic diagnosis. To the extent that this increased control over passing on a genetic disorder raises questions of parental responsibility, it seems necessary that the account of the aims of EUCS is wider than only in terms of enhancing reproductive autonomy. (shrink)

According to what we call the Principle of Procreative Beneficence, couples who decide to have a child have a significant moral reason to select the child who, given his or her genetic endowment, can be expected to enjoy the most well-being. In the first part of this paper, we introduce PB, explain its content, grounds, and implications, and defend it against various objections. In the second part, we argue that PB is superior to competing principles of procreative selection such as (...) that of procreative autonomy. In the third part of the paper, we consider the relation between PB and disability. We develop a revisionary account of disability, in which disability is a species of instrumental badness that is context- and person-relative. Although PB instructs us to aim to reduce disability in future children whenever possible, it does not privilege the normal. What matters is not whether future children meet certain biological or statistical norms, but what level of well-being they can be expected to have. (shrink)

The argument of Julian Savulescu’s 2001 paper, “Procreative Beneficence: Why We Should Select the Best Children” is flawed in a number of respects. Savulescu confuses reasons with obligations and equivocates between the claim that parents have some reason to want the best for their children and the more radical claim that they are morally obligated to attempt to produce the best child possible. Savulescu offers a prima facie implausible account of parental obligation, as even the best parents typically fail to (...) do everything they think would be best for their children let alone everything that is in fact best for their children. The profound philosophical difficulties which beset the attempt to formulate a plausible account of the best human life constitute a further independent reason to resile from Savulescu’s conclusion. Savulescu’s argument also requires parents to become complicit with racist and homophobic oppression, which is yet another reason to reject it. Removing the equivocation from Savulescu’s argument allows us to see that the assertion of an obligation to choose the “best child” has much more in common with the “old” eugenics than Savulescu acknowledges. (shrink)

Expanded universal carrier screening (EUCS) entails a population‐wide screening offer for multiple disease‐causing mutations simultaneously. Although there is much debate about the conditions under which EUCS can responsibly be introduced, there seems to be little discussion about its aim: providing carrier couples with options for autonomous reproductive choice. While this links in with current accounts of the aim of foetal anomaly screening, it is different from how the aim of ancestry‐based carrier screening has traditionally been understood: reducing the disease burden (...) in the population. The reasons why the aim of EUCS is presented in terms of ‘autonomy’ rather than ‘prevention’ have not been spelled out in the literature. This paper seeks to fill this gap by considering the morally relevant similarities and dissimilarities between foetal anomaly screening, ancestry‐based carrier screening and EUCS. When carrier screening is performed in the prenatal period, enhancing autonomy appears the most appropriate aim of EUCS, as the alternative of ‘prevention through selective abortion’ would urge women to terminate wanted pregnancies. However, when screening is conducted in the preconception period, carrier couples can avoid the birth of affected children by other means than selective abortion, for instance preimplantation genetic diagnosis. To the extent that this increased control over passing on a genetic disorder raises questions of parental responsibility, it seems necessary that the account of the aims of EUCS is wider than only in terms of enhancing reproductive autonomy. (shrink)

The ethically controversial option of genetic population screening used to be restricted to a small number of rather rare diseases by methodological limitations which are now about to be overcome. With the new technology of DNA microarrays ("DNA chip"), emerging from the synthesis of microelectronics and molecular biology, methods are now at hand for the development of mass screening programmes for a wide spectrum of genetic traits. Thus, the DNA chip may be the key technology for a refined preventive medicine (...) as well as a new dimension of eugenics. The forthcoming introduction of the DNA chip technology into medical practice urgently requires an internationally consistent framework of ethical standards and legal limitations if we do not want it to become a new Pandora's box. (shrink)

This paper considers parental duties of beneficence and non-maleficence to use prenatal genetic testing for non-treatable conditions. It is proposed that this can be a duty only if the testing is essential to protect the interests of the child ie only if there is a risk of the child being born to a life worse than non-existence. It is argued here that non-existence can be rationally preferred to a severely impaired life. Uncontrollable pain and a lack of any opportunity to (...) develop a continuous self are considered to be sufficient criteria for such preference. When parents are at risk of having a child whose life would be worse than non-existence, the parents have a duty to use prenatal testing and a duty to terminate an affected pregnancy. Further, such duty does not apply to any conditions where the resulting life can be considered better than non-existence. (shrink)

Spinal muscular atrophy (SMA) is the most common genetic disease that causes infant mortality. Its treatment and prevention represent the paradigmatic example of the ethical dilemmas of 21st‐century medicine. New therapies (nusinersen and AVXS‐101) hold the promise of being able to treat, but not cure, the condition. Alternatively, genomic analysis could identify carriers, and carriers could be offered in vitro fertilization and preimplantation genetic diagnosis. In the future, gene editing could prevent the condition at the embryonic stage. How should these (...) different options be evaluated and compared within a health system? In this paper, we discuss the ethical considerations that bear on the question of how to prioritize the different treatments and preventive options for SMA, at a policy level. We argue that despite the tremendous value of what we call ‘ex‐post’ approaches to treating SMA (such as using pharmacological agents or gene therapy), there is a moral imperative to pursue ‘ex‐ante’ interventions (such as carrier screening in combination with prenatal testing and preimplantation genetic diagnosis, or gene editing) to reduce the incidence of SMA. There are moral reasons relating to autonomy, beneficence and justice to prioritize ex‐ante methods over ex‐post methods. (shrink)

Book reviewed in this article: Principles of Biomedical Ethics. By Tom L. Beauchamp and James F. Childress.

Issues in reproductive ethics, such as the capacity of parents to ‘choose children’, present challenges to philosophical ideas of freedom, responsibility and harm. This book responds to these challenges by proposing a new framework for thinking about the ethics of reproduction that emphasizes the ways that social norms affect decisions about who is born. The book provides clear and thorough discussions of some of the dominant problems in reproductive ethics - human enhancement and the notion of the normal, reproductive liberty (...) and procreative beneficence, the principle of harm and discrimination against disability - while also proposing new ways of addressing these. The author draws upon the work of Michel Foucault, especially his discussions of biopolitics and norms, and later work on ethics, alongside feminist theorists of embodiment to argue for a new bioethics that is responsive to social norms, human vulnerability and the relational context of freedom and responsibility. This is done through compelling discussions of new technologies and practices, including the debate on liberal eugenics and human enhancement, the deliberate selection of disabilities, PGD and obstetric ultrasound. (shrink)