In 2015 a team of scientists used a new gene-editing technique called CRISPR-Cas9 to edit the genome of 86 non-viable human embryos. The experiment sparked a global debate on the ethics of gene editing. In this paper; I first review the key ethical issues that have been addressed in this debate. Although there is an emerging consensus now that research on the editing of human somatic cells for therapeutic purpose should be pursued further; the prospect of using gene-editing techniques for (...) the purpose of human enhancement has been met with strong criticism. The main thesis that I defend in this paper is that some of the most vocal objections recently raised against the prospect of genetic human enhancement are not justified. I put forward two arguments for the morality of genetic human enhancement. The first argument shows how the moral and legal framework within which we currently claim our procreative rights; especially in the context of IVF procedures; could be deployed in the assessment of the morality and legality of genetic human enhancement. The second argument calls into question the assumption that the average level of human cognitive performance should have a normative character. (shrink)

Abstract:This paper considers the relevance of the concept of “eugenics,”—a term associated with some of the most egregious crimes of the twentieth century—to the possibility of editing human genomes. The author identifies some uses of gene editing as eugenics but proposes that this identification does not suffice to condemn them. He proposes that we should distinguish between “morally wrong” practices, which should be condemned, and “morally problematic” practices that call for solutions, and he suggests that eugenic uses of gene editing (...) fall into this latter category. Although when we choose the characteristics of future people we are engaging in morally dangerous acts, some interventions in human heredity should nevertheless be acknowledged as morally good. These morally good eugenic interventions include some uses of preimplantation genetic diagnosis. The author argues that we should think about eugenic interventions in the same way that we think about morally problematic interventions in public health. When we recognize some uses of gene editing as eugenics, we make the dangers of selecting or modifying human genetic material explicit. (shrink)

Many countries are experiencing increasing levels of demand for access to assisted reproductive technologies. Policies regarding who can access ART and with what support from a collective purse are highly contested, raising questions about what state responses are justified. Whilst much of this debate has focused on the status of infertility as a disease, we argue that this is something of a distraction, since disease framing does not provide the far-reaching, robust justification for state support that proponents of ART seem (...) to suppose. Instead, we propose that debates about appropriate state responses should consider the various implications for health and broader well-being that may be associated with difficulties starting a family. We argue that the harms and disruption to valued life projects of subfertility-related suffering may provide a stronger basis for justifying state support in this context. Further, we suggest that, whilst ART may alleviate some of the harm resulting from subfertility, population-level considerations can indicate a broader range of interventions aimed at tackling different sources of subfertility-related harm, consistent with broader public health aims. (shrink)

Philosophers concerned with procreative ethics have long been puzzled by Parfit’s Non-Identity Problem (NIP). Various solutions have been proposed, but I argue that we have not solved the problem on its own narrow person-affecting terms, i.e., in terms of the identified individuals affected by procreative decisions and acts, especially future children. Thus, the core problem remains unsolved. This is a nagging concern for all who hold the common intuition that actions that harm no one are permissible. I argue against Harmon’s (...) and Woodward’s direct, narrow person-affecting solutions, and in favor of a new solution to the NIP. My solution, or, rather, dissolution, is based on the argument that merely possible people, i.e., hypothetical people who could possibly, but will not actually, exist, are morally irrelevant. I show that the NIP only arises when we concern ourselves with merely possible people. Once we are careful to restrict our concerns to only those that do or will exist, the NIP is dissolved. (shrink)

Controversial and provocative, To Be Real is a blueprint for the creation of a new political force.

Has the time come to put to bed the concept of a harm threshold when discussing the ethics of reproductive decision making and the legal limits that should be placed upon it? In this commentary, we defend the claim that there exist good moral reasons, despite the conclusions of the non-identity problem, based on the interests of those we might create, to refrain from bringing to birth individuals whose lives are often described in the philosophical literature as ‘less than worth (...) living’. (shrink)

It is commonly believed that disability disqualifies people from full participation in or recognition by society. This view is rooted in eugenic logic, which tells us that our world would be a better place if disability could be eliminated. In opposition to this position, I argue that that disability is inherent in the human condition and consider the bioethical question of why we might want to conserve rather than eliminate disability from our shared world. To do so, I draw together (...) an eclectic, rather than systematic, configuration of counter-eugenic arguments for conserving disability. The idea of preserving intact, keeping alive, and even encouraging to flourish denoted by conserve suggests that disabilities would be better understood as benefits rather than deficits. I present, then, a reading of disability as a potentially generative resource rather than unequivocally restrictive liability. In other words, what I consider here is the cultural and material contributions disability offers to the world. (shrink)

The aim of this paper is to scrutinize a contemporary standoff in the American debate over the moral permissibility of human reproductive cloning in its prospective use as a eugenic enhancement technology. I shall argue that there is some significant and under-appreciated common ground between the defenders and opponents of human cloning. Champions of the moral and legal permissibility of cloning support the technology based on the right to procreative liberty provided it were to become as safe as in vitro (...) fertilization and that it be used only by adults who seek to rear their clone children. However, even champions of procreative liberty oppose the commodification of cloned embryos, and, by extension, the resulting commodification of the cloned children who would be produced via such embryos. I suggest that a Kantian moral argument against the use of cloning as an enhancement technology can be shown to be already implicitly accepted to some extent by champions of procreative liberty on the matter of commodification of cloned embryos. It is in this argument against commodification that the most vocal critics of cloning such as Leon Kass and defenders of cloning such as John Robertson can find greater common ground. Thus, I endeavor to advance the debate by revealing a greater degree of moral agreement on some fundamental premises than hitherto recognized. (shrink)

‘Liberal eugenics’ has emerged as the most popular position amongst philosophers writing in the contemporary debate about the ethics of human enhancement. This position has been most clearly articulated by Nicholas Agar, who argues that the ‘new’ liberal eugenics can avoid the repugnant consequences associated with eugenics in the past. Agar suggests that parents should be free to make only those interventions into the genetics of their children that will benefit them no matter what way of life they grow up (...) to endorse. I argue that Agar's attempt to distinguish the new from the old eugenics fails. Once we start to consciously determine the genetics of future persons, we will not be able to avoid controversial assumptions about the relative worth of different life plans. Liberal eugenicists therefore confront the horns of a dilemma. Whichever way they try to resolve it, the consequences of widespread use of technologies of genetic selection are likely to look more like the old eugenics than defenders of the new eugenics have acknowledged. (shrink)

In recent decades, the intertwining ideas of self-determination and well-being have received tremendous support in bioethics. Discussions regarding self-determination, or autonomy, often focus on two dimensions—the capacity of the patient and the freedom from external coercion. The practice of obtaining informed consent, for example, has become a standard procedure in therapeutic and research medicine. On the surface, it appears that patients now have more opportunities to exercise their self-determination than ever. Nonetheless, discussions of patient autonomy in the bioethics literature, which (...) focus on individual patients making particular decisions, neglect the social structure within which health-care decisions are made. Looking through the lens of disability and informed by the feminist conception of relational autonomy, this essay argues that the issue of autonomy is much more complex than the individualist model suggests. The social system and the ableist ideology impose various forms of pressure or oppressive power that can affect people’s ability to choose according to their value system. Even if such powers are not directly coercive, they influence potential parents’ decisions indirectly—they structure their alternatives in such a way that certain options are never considered as viable and other decisions must be made. This paper argues that, instead of only focusing on the individual act of decision-making, we need to pay attention to the social structure that frames people’s decision. (shrink)

Proceedings of the Pittsburgh Workshop in History and Philosophy of Biology, Center for Philosophy of Science, University of Pittsburgh, March 23-24 2001 Session 1: Eugenics Narrative and Reproductive Engineering.

This paper comes out of a panel honoring the work of Anne Donchin (1940-2014), which took place at the 2016 Congress of the International Network on Feminist Approaches to Bioethics (FAB) in Edinburgh. My general aim is to highlight the contributions Anne made to feminist bioethics, and to feminist reproductive ethics in particular. My more specific aim, however, is to have a kind of conversation with Anne, through her work, about whether reproductive justice could demand insurance coverage for in vitro (...) fertilization. I quote liberally from Anne’s work for this purpose, but also to shower the reader with her words, reminding those of us who knew her well what a wonderful colleague she was. (shrink)

This paper explores the ethics of introducing genome-editing technologies as a new reproductive option. In particular, it focuses on whether genome editing can be considered a morally valuable alternative to preimplantation genetic diagnosis (PGD). Two arguments against the use of genome editing in reproduction are analysed, namely safety concerns and germline modification. These arguments are then contrasted with arguments in favour of genome editing, in particular with the argument of the child’s welfare and the argument of parental reproductive autonomy. In (...) addition to these two arguments, genome editing could be considered as a worthy alternative to PGD as it may not be subjected to some of the moral critiques moved against this technology. Even if these arguments offer sound reasons in favour of introducing genome editing as a new reproductive option, I conclude that these benefits should be balanced against other considerations. More specifically, I maintain that concerns regarding the equality of access to assisted reproduction and the allocation of scarce resources should be addressed prior to the adoption of genome editing as a new reproductive option. (shrink)

A common utilitarian argument in favor of abortion for fetal defects rests on some controversial assumptions about what counts as a life worth living. Yet critics of abortion for fetal defects are also in need of an argument free from controversial assumptions about the future child's quality of life. Christopher Kaczor (in: Kaczor (ed), The ethics of abortion: women's rights, human life, and the question of justice, Routledge, New York, 2011) has devised an analogy that apparently satisfies this condition. On (...) close scrutiny, however, Kaczor's analogy is too weak to debunk the common-morality intuition that at least some abortions for fetal defects are morally permissible. The upshot of this discussion is that, on the moral permissibility of abortions for fetal defects, a case-by-case approach is to be preferred. (shrink)

A crucial challenge for critical disability studies is developing an argument for why disabled people should inhabit our democratic, shared public sphere. The ideological and material separation of citizens into worthy and unworthy based on physiological variations imagined as immutable differences is what I call eugenic world building. It is justified by the idea that social improvement and freedom of choice require eliminating devalued human traits in the interest of reducing human suffering, increasing life quality, and building a more desirable (...) citizenry. In this essay, I outline the logic of inclusive and eugenic world building, define and explain the role of the "normate" in eugenic logic, and provide a critical disability studies reading of the 2005 novel Never Let Me Go by Kazuo Ishiguro and its 2010 film adaptation. I argue that the ways of being in the world we think of as disabilities must be understood as the natural variations, abilities, and limitations inherent in human embodiment. When this happens, disability will be understood not as a problem to be eliminated but, rather, as a valid way of being in the world that must be accommodated through a sustaining and sustainable environment designed to afford access for a wide range of human variations. (shrink)

This paper analyzes the underlying tendencies and attitudes toward reproductive medicine borrowing the Nietzschean concepts of nihilism: “death of God” with secularization; “will to power” with reproductive liberty and technological power; and the race of “supermen” with transhumanism. Medical science has advanced in leaps and bounds. In some way, technical innovations have given us unprecedented power to manipulate the way we reproduce. The indiscriminant use of medical technology is backed by a warped notion of human freedom. With secularization in the (...) West, freedom has taken on greater significance in society, but with a heavy emphasis on individual choices and rights. As technology joins forces with sexual liberty, it is not difficult to understand why the public accepts the latest novelty from the reproductive industry. As a result, many find Catholic teaching behind the times and incomprehensible, if not downright anti-scientific. In fact, this coupling of reproductive liberty (will) with reproductive technology (power) echoes the famous dictum “will to power” Nietzsche predicted would characterize post-modern societies. When liberty becomes absolute and technology unchecked, transhumanism is the logical outcome. As a response to these nihilistic tendencies, the paper will end with a critique drawing from theological insights. (shrink)

Anthropogenic climate change is arguably one of the biggest problems that confront us today. There is ample evidence that climate change is likely to affect adversely many aspects of life for all people around the world, and that existing solutions such as geoengineering might be too risky and ordinary behavioural and market solutions might not be sufficient to mitigate climate change. In this paper, we consider a new kind of solution to climate change, what we call human engineering, which involves (...) biomedical modifications of humans so that they can mitigate and/or adapt to climate change. We argue that human engineering is potentially less risky than geoengineering and that it could help behavioural and market solutions succeed in mitigating climate change. We also consider some possible ethical concerns regarding human engineering such as its safety, the implications of human engineering for our children and society, and we argue that these concerns can be addressed. Our upshot is that human engineering deserves further consideration in the debate about climate change. (shrink)

Safe and effective methods of preconception gender selection through flow cytometric separation of X- and Y-bearing sperm could greatly increase the use of gender selection by couples contemplating reproduction. Such a development raises ethical, legal, and social issues about the impact of such practices on offspring, on sex ratio imbalances, and on sexism and the status of women. This paper analyzes the competing interests in preconception gender selection, and concludes that its use to increase gender variety in a family, and (...) possibly for selecting the gender of firstborn, might in many instances be ethically acceptable. (shrink)

Der weltweit erste Mitochondrien-Transfer, auch als Erzeugung eines „Drei-Eltern-Kindes“ bezeichnet, hat 2016 eine intensive Debatte ausgelöst. Hinsichtlich des Verfahrens, das bisher nur in Großbritannien zugelassen ist, werden auch verschiedene ethische Aspekte angesprochen. Dazu gehören die Risikoabwägung, die reproduktive Selbstbestimmung und die psychosoziale Entwicklung eines Kindes, das von drei Individuen abstammt. Dabei fällt auf, dass zentrale konzeptuelle Fragen hinsichtlich des Mitochondrien-Transfers nicht geklärt sind. Ist der Mitochondrien-Transfer eine genetische Intervention in die Keimbahn? Handelt es sich bei dem Verfahren um eine medizinisch (...) indizierte Therapie oder um eine elektive Behandlung assistierter Reproduktion? Welche Konzepte von Identität und Elternschaft liegen der Auffassung eines „Drei-Eltern-Kindes“ zugrunde? Im Kontext dieser konzeptuellen Fragen muss eine ethische Analyse des Mitochondrien-Transfers durchgeführt werden. In den meisten Fällen zeigt sich allerdings, dass die ethische Analyse zu stark auf Einzelaspekte fokussiert ist, wodurch diese konzeptuellen Fragen aus dem Blick geraten. Daher verbinden wir in unserem Beitrag die ethische Analyse mit konzeptuellen Überlegungen. Dabei ist es von zentraler Bedeutung, auch die biomedizinischen Grundlagen des Verfahrens eingehend zu erörtern, um die konzeptuellen Aspekte angemessen einordnen zu können. In einem ersten Schritt erläutern wir die unterschiedlichen Verfahren des Mitochondrien-Transfers. In einem zweiten Schritt schlagen wir eine konzeptuelle Klärung der drei genannten Fragen vor. Diese konzeptuelle Klärung dient als Grundlage, um die ethischen Aspekte der reproduktiven Selbstbestimmung, Risikoabwägung sowie Elternschaft und Identitätskonzeption zu analysieren. In einem dritten Schritt fassen wir die Ergebnisse zusammen. (shrink)

In a project The Hastings Center is now running on the future of prenatal testing, we are encountering clear examples, both in established law and in the practices of individual providers, of failures to respect women's reproductive autonomy: when testing is not offered to certain demographics of women, for instance, or when the choices of women to terminate or continue pregnancies are prohibited or otherwise not supported. But this project also raises puzzles for reproductive autonomy. We have learned that some (...) clinicians and patients do not discuss the fact that prenatal testing can lead to a decision about whether to terminate a pregnancy—they just don't talk about it. And while the decision whether to agree to prenatal screening and diagnostic testing is to be made with women's free and informed consent, many screening tests have been routinized in such a way that some women do not even recall agreeing to testing, while others feel that agreeing to testing is what their clinicians expect of them or that the testing is necessary to protect themselves and their families from the significant financial hardship of raising a child with a disability. In the face of these pressures, can one really say that women are freely choosing to undergo testing or are freely choosing to continue or terminate a pregnancy following receipt of test results? The reality of these pressures is requiring us to consider expanding the scope of our investigation beyond the clinical encounter to the broader context—to think harder about what reproductive autonomy means and how best to enhance it. (shrink)

Having and raising children is widely regarded as one of the most valuable projects a person can choose to undertake. Yet many disabled people find it difficult to share in this value because of obstacles that arise from widespread social attitudes about disability. A common assumption is that having a disability tends to make someone unfit to parent. This assumption may seem especially relevant as a factor in decisions about whether to allow, encourage and assist disabled people to reproduce and (...) raise children. Yet there are reasons to doubt whether there is such a close connection between having a disability and lacking the ability to raise a child well. The aims of this paper are, first, to identify and clarify some values that are relevant to questions about allowing, encouraging and assisting disabled people to procreate and raise children, second, to give an overview of how these values can help us to address certain legal questions that arise for disabled people who aim to procreate and parent, third, to raise concerns about how to properly assess the parenting capacities of people with disabilities, and fourth, to suggest some ways in which having a disability can actually make someone a better parent. (shrink)

Preimplantation genetic diagnosis is a new method of prenatal diagnosis that is developing from a union of in vitro fertilization technology and molecular biology. Briefly stated, PGD involves the creation of several embryos in vitro from the eggs and sperm of an interested couple. The embryos are permitted to develop to a 6-to-10-cell stage, at which point one of the embryonic cells is removed from each embryo and the cellular DNA is analyzed for chromosomal abnormalities or genetic mutations. An embryo (...) or several embryos found to be free of genetic abnormalities are subsequently transferred to the woman's uterus for gestation. Embryos found to carry a genetic abnormality are discarded or frozen. Extra normal embryos may be frozen for future transfer or donation to another couple. (shrink)

Fertility specialists, adoption agents, judges and others sometimes take themselves to have a responsibility to fairly adjudicate conflicts that may arise between the procreative and parenting interests of people with disabilities and the interests that their children or potential children have to be nurtured, cared for and protected. An underlying assumption is that having a disability significantly diminishes a person's parenting abilities. My aim is to challenge the claim that having a disability tends to make someone a bad parent by (...) arguing that the interests of prospective parents with disabilities and the interests of their children or potential children are often aligned and mutually supporting. (shrink)

The analysis of a dispute can focus on either interests, rights, or power. Commentators often frame the conflict over conscience in clinical practice as a dispute between a patient’s right to legally available medical treatment and a clinician’s right to refuse to provide interventions the clinician finds morally objectionable. Multiple sources of unresolvable moral disagreement make resolution in these terms unlikely. One should instead focus on the parties’ interests and the different ways in which the health care delivery system can (...) accommodate them. In the specific case of pharmacists refusing to dispense emergency contraception, alternative systems such as advanced prescription, pharmacist provision, and over-the-counter sales may better reconcile the client’s interest in preventing unintended pregnancy and the pharmacist’s interest in not contravening his or her conscience. Within such an analysis, the ethicist’s role becomes identifying and clarifying the parties’ morally relevant interests. (shrink)

In this paper we will look at the various ways in which infertility can be understood and at how need for reproductive therapies can be construed. We will do this against the background of research with artificial gametes. Having explored these questions we will attempt to establish the degree to which technologies such as AGs could expand the array of choices that people have to reproduce and/or become parents. Finally, we will examine whether and in what ways the most promising (...) developments of such technologies are likely to bring about the “end of infertility”. (shrink)

While many experts and organizations have recognized infertility as a public health issue, most governments have not yet adopted a public health approach to infertility. This article argues in favor of such an approach by discussing the various implications of infertility for public health. We use a conceptual framework that focuses on the dual meaning of the term ‘public’ in this context: the health of the public, as opposed to that of individuals, and the public/collective nature of the required interventions. (...) This analysis highlights the need for a comprehensive public health approach toward infertility, points to some initiatives that are already in place and demonstrates that prevention is currently a neglected—yet much needed——element. We move on to discuss the sensitive nature of prevention initiatives as a probable explanation for their scarcity. We illustrate the complexity of prevention through an analysis of an infertility prevention campaign previously conducted in the United States, which provoked significant controversy. We use a public health communication ethics framework to expose the strengths and the shortcomings of this campaign, and conclude that prevention initiatives targeting infertility can indeed be conducted in a sensible way that promotes autonomy while improving public health. (shrink)

Existing debate on procreative selection focuses on the well-being of the future child. However, selection decisions can also have significant effects on the well-being of others. Moreover, these effects may run in opposing directions; some traits conducive to the well-being of the selected child may be harmful to others, whereas other traits that limit the child’s well-being may preserve or increase that of others. Prominent selection principles defended to date instruct parents to select a child, of the possible children they (...) could have, likely to have a good (or nonbad) life, but they do not instruct parents to independently take the well-being of others into account. We refer to these principles as individualistic selection principles. We propose a new selection principle—Procreative Altruism—according to which parents have significant moral reason to select a child whose existence can be expected to contribute more to (or detract less from) the well-being of others than any alternative child they could have. We present the case for adopting Procreative Altruism alongside any of the major individualistic selection principles proposed to date and defend this two-principle model against a range of objections. (shrink)

Since its inception decades ago, technological intervention in human reproduction has been the subject of considerable attention and controversy. After identifying two focal points of debate, I focus in this paper upon an emerging body of literature responsive to a host of problematic issues that, scholars claim, reproductive technologies pose. Maintaining that critical assessment of this literature is necessary, I identify two areas of inquiry which deserve attention and, correspondingly, sketch directions which might guide further study.

Since the first sex reassignment operations were performed, individual sex has come to be, to some extent at least, a technological artifact. The existence of sperm sorting technology, and of prenatal determination of fetal sex via ultrasound along with the option of termination, means that we now have the power to choose the sex of our children. An influential contemporary line of thought about medical ethics suggests that we should use technology to serve the welfare of individuals and to remove (...) limitations on the opportunities available to them. I argue that, if these are our goals, we may do well to move towards a “post sex” humanity. Until we have the technology to produce genuine hermaphrodites, the most efficient way to do this is to use sex selection technology to ensure that only girl children are born. There are significant restrictions on the opportunities available to men, around gestation, childbirth, and breast-feeding, which will be extremely difficult to overcome via social or technological mechanisms for the foreseeable future. Women also have longer life expectancies than men. Girl babies therefore have a significantly more “open” future than boy babies. Resisting the conclusion that we should ensure that all children are born the same sex will require insisting that sexual difference is natural to human beings and that we should not use technology to reshape humanity beyond certain natural limits. The real concern of my paper, then, is the moral significance of the idea of a normal human body in modern medicine. (shrink)

: We criticize a view of maternity that equates the natural with the genetic and biological and show how such a practice overdetermines the maternal body and the maternal experience for women who are mothers through adoption and ART (Assisted Reproductive Technologies). As an alternative, we propose a new framework designed to rethink maternal bodies through the lens of feminist embodiment. Feminist embodied maternity, as we call it, stresses the particularity of experience through subjective embodiment. A feminist embodied maternity emphasizes (...) the physical relations of the subjective lived-body rather than the genetic or biological connections. Instead of universalizing claims about the maternal body, embodied maternity looks to communicable experiences and empathetic understanding. (shrink)

Recently, debate over whether health care providers should have a protected right to conscientiously refuse to offer legal health care services—such as abortion, elective sterilization, aid in dying, or treatments for transgender patients—has grown exponentially. I advance a modified compromise view that bases respect for claims of conscientious refusal to provide specific health care services on a publicly defensible rationale. This view requires health care providers who refuse such services to disclose their availability by other providers, as well as to (...) arrange for referrals or facilitate transfers of care. This requirement raises the question of whether providers are being forced to be complicit in the provision of services they deem to be morally objectionable. I conclude by showing how this modified compromise view answers the most significant objections mounted by critics of the right to conscientious refusal and safeguards providers from having to offer services that most directly threaten their moral integrity. (shrink)

What is Christian about Christian bioethics? The short answer to this question is that the Incarnation should shape the form and content of Christian bioethics. In explicating this answer it is argued that contemporary medicine is unwittingly embracing and implementing the transhumanist dream of transforming humans into posthumans. Contemporary medicine does not admit that there are any limits in principle to the extent to which it should intervene to improve the quality of human life. This largely inarticulate, yet ambitious, agenda (...) is derived first in late modernity's failed, but nonetheless ongoing, attempt to transform necessity into goodness, and second the loss of any viable concept of eternity, thereby stripping temporal existence of any normative significance. In short, medicine has become the vanguard of a profane attempt to save humankind by extracting data from flesh. In response, it is contended that an alternative Christian bioethics must be shaped by the Incarnation, the Word made flesh. This assertion does not entitle Christians to oppose the posthuman trajectory of contemporary medicine on the basis of any natural or biological essentialism. Rather, it is an evangelical witness to the grace of Christ's redemption instead of the work of self-transformation. It is Christ alone who thereby makes the vulnerability and mortality of finitude a gift and blessing. Specifically, it is maintained that the chasm separating necessity and goodness cannot be filled but only bridged through the suffering entailed in Christ's cross, and through Christ's resurrection eternity becomes the standard against which the temporal lives of human creatures are properly formed and measured. Consequently, Christian bioethics should help us become conformed to Christ rather than enabling selftransformation. (shrink)

In the last few years, a great deal of attention has been paid to the effects that the achievements of the Human Genome Project will have on the confidentiality of medical information. The Genetic Privacy Act is an attempt to address the privacy, confidentiality, and property rights relating to obtaining, requesting, using, storing, and disposing of genetic material. The GPA grew out of concerns over the vast amount of genetic information that is a product of the Human Genome Project. The (...) central goals of the GPA are twofold: to define an individual's right to control access to their genetic material and the privilege to control the information derived therefrom; and to prevent potential and actual abuse of genetic information by third parties, such as insurance companies, employers, and government. The GPA is one of a group of proposals that seek to control the flow of medical information from the individual to health care professionals and to other persons. (shrink)

Stigma taints individuals with a spoiled identity and loss of status or discrimination. This article is the first to examine the stigma attached to abortion and surrogacy and consider how law may stigmatize women for failing to conform to social expectations about maternal roles. Courts should consider evidence of stigma when evaluating laws regulating abortion or surrogacy to determine whether these laws are based on impermissible gender stereotyping.

The identification and avoidance of disease susceptibility in embryos is the most common goal of preimplantation genetic diagnosis (PGD). Most jurisdictions that accept but regulate the availability of PGD restrict it to what are characterized as ‘serious’ conditions. Line-drawing around seriousness is not determined solely by the identification of a genetic mutation. Other factors seen to be relevant include: impact on health or severity of symptoms; degree of penetrance (probability of genotype being expressed as a genetic disorder); potential for therapy; (...) rate of progression; heritability; and age of onset. In the original applications of PGD, most, if not all of these factors were seen as necessary but none was seen as sufficient for determining whether a genetic condition was labelled ‘serious’. This, however, is changing as impact on health or severity of symptoms is coming to eclipse the other considerations. This paper investigates how age of onset (primarily in the context of the United Kingdom (UK)) has become considerably less significant as a criterion for determining ethically acceptable applications of PGD. Having moved off the threshold of permitting PGD testing for only fatal (or seriously debilitating), early-onset diseases, I will investigate reasons for why age of onset will not do any work to discriminate between which adult-onset diseases should be considered serious or not. First I will explain the rationale underpinning age of onset as a factor to be weighed in making determinations of seriousness. Next I will challenge the view that later-onset conditions are less serious for being later than earlier-onset conditions. The final section of the paper will discuss some of the broader disability concerns at stake in limiting access to PGD based upon determinations of the ‘seriousness’ of genetic conditions. Instead of advocating a return to limiting PGD to only early-onset conditions, I conclude that the whole enterprise of trying to draw lines of what is to count as a ‘serious’ condition is itself problematic and in certain ways morally misleading. (shrink)

There are substantial numbers of frozen embryos in storage that will not be used by those who produced them for their own fertility treatment. One option for such embryos is to donate them to others to use in their fertility treatment. There has been considerable debate about how this process should be organized. In the US, there are embryo adoption programmes that mediate between those relinquishing embryos and potential recipients. This is a form of conditional embryo donation, where the relinquishing (...) couple can choose the recipient of their embryo. This article examines the ethical debate over conditional embryo donation for family building and explores the question of whether those who have unused frozen embryos should be able to determine who receives their embryos. The main objections to conditional embryo donation are examined: first, the embryo is not a person and therefore such concern over the placement of an embryo is unwarranted; secondly, potential donors might impose morally problematic conditions on who should receive their embryo; and thirdly, there are practical difficulties regarding organizational arrangements and the associated costs involved. It will be concluded that these objections can be countered and that if people wish to donate and receive embryos in this way there is no ethical objection to them doing so. (shrink)

In the last few years, a great deal of attention has been paid to the effects that the achievements of the Human Genome Project will have on the confidentiality of medical information. The Genetic Privacy Act is an attempt to address the privacy, confidentiality, and property rights relating to obtaining, requesting, using, storing, and disposing of genetic material. The GPA grew out of concerns over the vast amount of genetic information that is a product of the Human Genome Project. The (...) central goals of the GPA are twofold: to define an individual's right to control access to their genetic material and the privilege to control the information derived therefrom; and to prevent potential and actual abuse of genetic information by third parties, such as insurance companies, employers, and government. The GPA is one of a group of proposals that seek to control the flow of medical information from the individual to health care professionals and to other persons. (shrink)

Debate over the relationship of law and bioethics is growing - what the relationship has been and what it should be in the future. While George Annas has praised law and rights-talk for creating modern bioethics, Carl Schneider has instead blamed law for hijacking bioethics and stunting moral reflection. Indeed, as modern bioethics approaches the 40-year mark, historians of bioethics are presenting divergent accounts. In one account, typified by Albert Jonsen, bioethics largely grew out of philosophy and theology, not law. (...) In another account, law has deeply shaped bioethics from the start, forging its central commitment to the rights of patients and research subjects and the fields imposition of broad fiduciary responsibilities on health care professionals and researchers.In addition to debating how to properly describe laws historical relationship to bioethics, commentators have argued over whether laws influence in bioethics is now good or bad. (shrink)

Advances in reproductive genetic engineering have the potential to transform human lives. Not only do they promise to allow us to select children free of diseases, they can also enable us to select children with desirable traits. In this paper, I consider two clusters of arguments for the moral permissibility of reproductive genetic engineering, what I call the Perfectionist View and the Libertarian View; and two clusters of arguments against reproductive genetic engineering, what I call the Human Nature View and (...) the Motivation View. I argue that an adequate theory of the ethics of reproductive genetic engineering should take into account insights gained from these views. (shrink)

This paper argues that the convention of allocating donated gametes on a ‘first come, first served’ basis should be replaced with an allocation system that takes into account more morally relevant criteria than waiting time. This conclusion was developed using an empirical bioethics methodology, which involved a study of the views of 18 staff members from seven U.K. fertility clinics, and 20 academics, policy-makers, representatives of patient groups, and other relevant professionals, on the allocation of donated sperm and eggs. Against (...) these views, we consider some nuanced ways of including criteria in a points allocation system. We argue that such a system is more ethically robust than ‘first come, first served’, but we acknowledge that our results suggest that a points system will meet with resistance from those working in the field. We conclude that criteria such as a patient's age, potentially damaging substance use, and parental status should be used to allocate points and determine which patients receive treatment and in what order. These and other factors should be applied according to how they bear on considerations like child welfare, patient welfare, and the effectiveness of the proposed treatment. (shrink)