In the near future developments in non-invasive prenatal testing may soon provide couples with the opportunity to test for and diagnose a much broader range of heritable and congenital conditions than has previously been possible. Inevitably, this has prompted much ethical debate on the possible implications of NIPT for providing couples with opportunities for reproductive choice by way of routine prenatal screening. In view of the possibility to test for a significantly broader range of genetic conditions with NIPT, the European (...) Society of Human Genetics and American Society of Human Genetics recommend that, pending further debate, prenatal screening for reproductive choice should only be offered where concerning serious congenital conditions and childhood disorders. In support of this recommendation, the ESHG and ASHG discuss a number of ethical issues on which they prompt further debate: the informational privacy of the future child, the trivialization of abortion, the risk of information overload, and issues of distributive justice. This paper responds to this call with further reflection on each ethical issue and how it relates to the moral justification of providing couples with opportunities for meaningful reproductive choice. The paper concludes that whilst there may be good reasons for qualifying the scope of any unsolicited prenatal screening offer to serious congenital conditions and childhood disorders, if prenatal screening is justified for providing couples with opportunities for meaningful reproductive choice, then health services may have obligations to empower couples with the same opportunity where concerning other conditions. (shrink)

The article addresses the problem of disability in the context of reproductive decisions based on genetic information. It poses the question of whether selective procreation should be considered as a moral obligation of prospective parents. To answer this question, a number of different ethical approaches to the problem are presented and critically analysed: the utilitarian; Julian Savulescu's principle of procreative beneficence; the rights-based. The main thesis of the article is that these approaches fail to provide any appealing principles on which (...) reproductive decisions should be based. They constitute failures of imagination which may result in counter-intuitive moral judgments about both life with disability and genetic selection. A full appreciation of the ethical significance of recognition in procreative decisions leads to a more nuanced and morally satisfying view than other leading alternatives presented in the article. (shrink)

The general perception of how innovative assisted reproductive technologies are introduced is through a carefully controlled series of experiments in an animal model, such as the mouse. Only after the technique has been proven can one consider confirmatory studies on mammals closely related to humans, such as rhesus monkeys or other nonhuman primates. With this background of a peer-reviewed body of well-established published data, there is sufficient foundation and rationale to propose a clinical investigation to a responsible human subjects institutional (...) review board. IRBs weigh the benefits and risks of the new methods to human subjects, and then consider the appropriate informed consent procedures for the particular case. Only after a large number of clinical studies are performed at multiple sites and are peer reviewed can the efficacy and safety of the innovative approach be clearly evaluated. At that time, the potential therapy can be responsibly offered to suitable beneficiaries. (shrink)

The general perception of how innovative assisted reproductive technologies are introduced is through a carefully controlled series of experiments in an animal model, such as the mouse. Only after the technique has been proven can one consider confirmatory studies on mammals closely related to humans, such as rhesus monkeys or other nonhuman primates. With this background of a peer-reviewed body of well-established published data, there is sufficient foundation and rationale to propose a clinical investigation to a responsible human subjects institutional (...) review board. IRBs weigh the benefits and risks of the new methods to human subjects, and then consider the appropriate informed consent procedures for the particular case. Only after a large number of clinical studies are performed at multiple sites and are peer reviewed can the efficacy and safety of the innovative approach be clearly evaluated. At that time, the potential therapy can be responsibly offered to suitable beneficiaries. (shrink)

The ArgumentWhat are the aims of genetic services? Do any of these aims deserve to be labeled “eugenics”? Answers to these strenuously debated questions depend not just on the facts about genetic testing and screening but also on what is understood by “eugenics,” a term with multiple and contested meanings. This paper explores the impact of efforts to label genetic services “eugenics” and argues that attempts to protect against the charge have seriously distorted discussion about their purpose. Following Ruth Chadwick, (...) I argue that the existence of genetic services presupposes that genetic disease is undesirable and that means should be offered to reduce it. I further argue that the economic cost of such disease is one reason why governments and health care providers deem such services worthwhile. The important question is not whether such cost considerations constitute “eugenics,” but whether they foster practices that are undesirable and, if so, what to do about them. The wielding of the term “eugenics” as a weapon in a war over the expansion of genetic services, conjoined with efforts to dissociate such services from the abortion controversy, has produced a rhetoric about the aims of these services that is increasingly divorced from reality. Candor about these aims is a sine qua non of any useful debate over the legitimacy of the methods used to advance them. (shrink)

At times decisions are made in the field of genetics that are presented as if the ethical debates have been adequately treated and so all moral considerations have been addressed, when the truth is very different. Nor is it always easy or desirable to separate the ethical, legal and social questions posed by new developments. The impact of developments in genetic science upon communities is one field of enquiry that envelops each of these areas.This paper explores the impact of genetics (...) upon communities through focusing, in particular, upon certain developments in reproductive science. After introducing core issues and technologies, it discusses particular ethical concerns in relation to the ‘shadow’ of eugenics over such developments, before exploring the role of legislative debates and procedures in transforming social attitudes, values and hence norms. It then turns to consider debates concerning the ‘quality of life ethic’ now prevalent in healthcare, and moves on to discuss the issue of genetic discrimination – focusing, in particular, upon discrimination against disabled persons as a representative instance of the actual ethical and social/communitarian implications of the foregoing. It ends by highlighting the need to discern the ways in which the ethics of genetics is presently shaped and practised in order to discern better the particular social and communitarian implications of certain technological advances. (shrink)

The 20th century eugenics movement in the USA and contemporary practices involving prenatal screening (PNS), prenatal diagnosis (PND), abortion and preimplantation genetic diagnosis (PGD) share important morally relevant similarities. I summarise some features of the 20th century eugenics movement; describe the contemporary standard of care in the USA regarding PNS, PND, abortion and PGD; and demonstrate that the ‘old eugenics’ the contemporary standard of care share the underlying view that social resources should be invested to prevent the birth of people (...) with certain characteristics. This comparison makes evident the difficulty of crafting moral arguments that treat some uses of PNS, PND, abortion and PGD as licit and others as illicit. (shrink)

abstract John Robertson has famously argued that the right to reproductive autonomy is exceedingly broad in scope. That is, as long as a particular reproductive preference such as having a deaf child is “determinative” of the decision to reproduce then such preferences fall under the protective rubric of reproductive autonomy rights. Importantly, the deafness in question does not constitute a harm to the child thereby wrought since unless the child could be born deaf he or she would otherwise never have (...) existed— his or her prospective parents would simply have chosen to abort. As such, for this child, being born deaf counts as a benefit, albeit of the “backhanded” variety, since the only other practical alternative is nonexistence. In what follows, I want to investigate this argument in detail. The target of my investigation will be the possible future use of gene therapy technology to “disenhance” one's offspring. I intend to show that the apparently unlimited right to reproductive autonomy, that is, the right to choose both the quantity and qualities of future offspring, entailed by the argument from backhanded benefit can in fact be “sidestepped” through considering what sorts of reproductive practices we as a society ought to allow. (shrink)

South Africa’s Choice on Termination of Pregnancy Act of 1996 implicitly expresses the attitude that the prenatal detection of foetal abnormality justifies selective abortion, even at a stage when abortion is in general morally prohibited. It will be argued that this attitude is logically incompatible with a simultaneous commitment to non-discrimination against persons with disabilities, in that the Act makes allowance for the subjection of beings that are considered to be morally significant, but that exhibit disabling characteristics, to worse treatment (...) than their non-disabled counterparts, despite the fact that this differential treatment is not always justified by the presence of impairment. (shrink)

I respond here to the essays by Karen Lebacqz and Stephen Palmquist, beginning with my debt of gratitude to Lebacqz for her understanding of the methodological depth I try to bring to the analysis of bioethical issues. I further illustrate that observation here by reviewing the logic of my approach to the issue of wrongful life. At the same time, in connection with human genetic enhancement, I acknowledge that I may have not properly appreciated the seriousness of the problem of (...) sin. To Palmquist's assertion that my criticisms of Kant's treatments of grace miss the way Kant has confined himself to being a philosophical theologian, I argue that Kant's problem lies instead in his poor application of his own compelling insights about the depths of human sinning. I close with an appreciation of Palmquist's observation of some important points of contact between Kant's understanding of sin and that of Kierkegaard. (shrink)

From the first initiatives in preimplantation genetic diagnosis and gene therapy through the advent of stem cell research to the development of mammalian cloning, the past two decades have witnessed remarkable advances in “reprogenetic” medicine: the union of assisted reproductive technologies with genetic control. This period has also been marked by intense debates within the bioethical literature and in national policy forums about the appropriate uses of these emerging human capabilities. We can now, in a limited way, select for genetic (...) traits, and the power to modify the genome or introduce new gene sequences is not far off. How should these new powers be used? (shrink)

The term duty is used in philosophy and law to de scribe the obligation one person owes to another. Yet what these two disciplines mean by duty often differs. Perhaps even more important, a determination by the law that a duty exists has different social consequences than does a similar assessment by philosophy Moral or ethical obligations between individuals make living in society possible, but breach of these obligations usually results only in social opprobrium, personal guilt, or shame. A legal (...) duty, by contrast, enables a person to use the power of the state to enforce claims against another, either by injunction to make the duty-ower fulfill his/her responsibilities or more commonly by award of damages in the event the duty-ower fails to meet these obligations. In some cases, society itself chooses to impose criminal penalties on those who fail to meet certain important obligations.The use of the term duty in both disciplines creates the temptation to extend a definition formulated in one setting to the other discourse. Ronald Green does not bite this apple, but his efforts to draw on the law to support his moral arguments, while not clearly identifying the distinctions between legal and moral obligations, may make it easier for others to see moral and legal duties as the same. Yielding to the enticement to equate moral and legal duties can lead to a host of difficulties. My purpose here is to demonstrate why the duties and privileges proposed by Professor Green are not and should not be adopted and enforced by the law. (shrink)

The term duty is used in philosophy and law to de scribe the obligation one person owes to another. Yet what these two disciplines mean by duty often differs. Perhaps even more important, a determination by the law that a duty exists has different social consequences than does a similar assessment by philosophy Moral or ethical obligations between individuals make living in society possible, but breach of these obligations usually results only in social opprobrium, personal guilt, or shame. A legal (...) duty, by contrast, enables a person to use the power of the state to enforce claims against another, either by injunction to make the duty-ower fulfill his/her responsibilities or more commonly by award of damages in the event the duty-ower fails to meet these obligations. In some cases, society itself chooses to impose criminal penalties on those who fail to meet certain important obligations.The use of the term duty in both disciplines creates the temptation to extend a definition formulated in one setting to the other discourse. Ronald Green does not bite this apple, but his efforts to draw on the law to support his moral arguments, while not clearly identifying the distinctions between legal and moral obligations, may make it easier for others to see moral and legal duties as the same. Yielding to the enticement to equate moral and legal duties can lead to a host of difficulties. My purpose here is to demonstrate why the duties and privileges proposed by Professor Green are not and should not be adopted and enforced by the law. (shrink)

The advent of prenatal genetic diagnosis has sparked debates among ethicists and philosophers regarding parental responsibility towards potential offspring. Some have attempted to place moral obligations on parents to not bring about children with certain diseases in order to prevent harm to such children. There has been no rigorous evaluation of cystic fibrosis in this context. This paper will demonstrate cystic fibrosis to have unique properties that make it difficult to categorise among other diseases with the goal of promulgating a (...) reproductive rule. Once this is established, it will be demonstrated that procreative rules that appeal to future health are inadequate in the era of advancing genetic knowledge. Utilising a specification of Joel Feinberg's ‘open future’ concept outlined by Matteo Mameli, it will offer an analysis of parental obligation that does not constrain parents of potential children with cystic fibrosis with a moral obligation not to bring them about. (shrink)

The law of unintended consequences is generally applied to technological advances that solve one problem but cause another. In this view, the problem created may be worse than that which was solved, hence the law is used as an argument against technological advances. Concern about intent and consequence comes to mind when reading the article by Ronald Green on parental decision making and prenatal genetics. Green's analysis, combined with the realities of genetic practice, raises questions about parental power, eugenics, and (...) the interests of children affected by genetic or congenital disorders. Green proposes rules and draws conclusions that are not useful for clinicians and that promise harm to families and individuals affected by genetic disorders. Green's analysis may be an example of a corollary that could be viewed as the Law of Unintended Ethics.Green's paper begins with an apparently contradictory dual thesis. First, he supports unfettered parental decision making about their fetuses and children. Second, he suggests that we should strive to give our children lives unimpaired by serious genetic disorders. (shrink)

The law of unintended consequences is generally applied to technological advances that solve one problem but cause another. In this view, the problem created may be worse than that which was solved, hence the law is used as an argument against technological advances. Concern about intent and consequence comes to mind when reading the article by Ronald Green on parental decision making and prenatal genetics. Green's analysis, combined with the realities of genetic practice, raises questions about parental power, eugenics, and (...) the interests of children affected by genetic or congenital disorders. Green proposes rules and draws conclusions that are not useful for clinicians and that promise harm to families and individuals affected by genetic disorders. Green's analysis may be an example of a corollary that could be viewed as the Law of Unintended Ethics.Green's paper begins with an apparently contradictory dual thesis. First, he supports unfettered parental decision making about their fetuses and children. Second, he suggests that we should strive to give our children lives unimpaired by serious genetic disorders. (shrink)