: New genetic technologies continue to emerge that allow us to control the genetic endowment of future children. Increasingly the claim is made that it is morally "irresponsible" for parents to fail to use such technologies when they know their possible children are at risk for a serious genetic disorder. We believe such charges are often unwarranted. Our goal in this article is to offer a careful conceptual analysis of the language of irresponsibility in an effort to encourage more care (...) in its use. Two of our more important sub-claims are: A fair judgment of genetic irresponsibility necessarily requires a thick background description of the specific reproductive choice; and there is no necessary connection between an act's being morally wrong and its being irresponsible. These are distinct judgments requiring distinct justifications. (shrink)

The American screenwriter and film director Billy Wilder referred to the perfect vision of hindsight; “hindsight is always twenty-twenty”. But hindsight may also distort and prejudice our judgment of past events in a way that it is difficult to compensate for. A 28 year old paper, part of a doctoral dissertation submitted to the Hebrew University of Jerusalem, has been reprinted in Quality and Safety in Health Care under the heading “Classic Paper”.The three experiments described in this paper, together with (...) a fourth referred to briefly, show that thinking that we know the outcome of a series …. (shrink)

When is it permissible to allow a newborn infant to die on the basis of their future quality of life? The prevailing official view is that treatment may be withdrawn only if the burdens in an infant's future life outweigh the benefits. In this paper I outline and defend an alternative view. On the Threshold View, treatment may be withdrawn from infants if their future well-being is below a threshold that is close to, but above the zero-point of well-being. I (...) present four arguments in favor of the Threshold View, and identify and respond to several counterarguments. I conclude that it is justifiable in some circumstances for parents and doctors to decide to allow an infant to die even though the infant's life would be worth living. The Threshold View provides a justification for treatment decisions that is more consistent, more robust, and potentially more practical than the standard view. (shrink)

This is about the rights and wrongs of bringing people into existence. In a nutshell: sometimes what matters is not what would have happened to you, but what would have happened to the person who would have been in your position, even if that person never actually exists.

The question I address in this paper is whether and under what conditions it is morally right to bring a person into existence. I defend the commonsensical thesis that, other things being equal, it is morally wrong to create a person who will be below some threshold of quality of life, even if the life of this potential person, once created, will nevertheless be worth living. However commonsensical this view might seem, it has shown to be problematic because of the (...) so-called 'Non-Identity Problem'. Both utilitarian and rights-based approaches have been unable to provide a solution to this problem. I rest my thesis on two premises: that causing a disability or impairment in a future person is prima facie wrong, so long as we can avoid causing such a disability to that very person; and that reproduction, under normal conditions, is prima facie morally indifferent. From these two premises, I conclude that it is prima facie wrong to bring into existence a person with a non-trivial disability or impairment (which might be, nonetheless, compatible with a worthwhile life), even if the only available alternative is to remain childless. (shrink)

My aim in this article is to argue that Philippa Foot fails to provide a convincing basis for moral evaluation in her bookNatural Goodness.Foot's proposal fails because her conception of natural goodness and defect in human beings either sanctions prescriptive claims that are clearly objectionable or else it inadvertently begs the question of what constitutes a good human life by tacitly appealing to an independent ethical standpoint to sanitize the theory's normative implications. Foot's appeal to natural facts about human goodness (...) is in this way singled out as an Achilles' heel that undermines her attempt to establish an independent framework for virtue ethics. This problem might seem to be one that is uniquely applicable to the bold naturalism of Foot's methodology; however, I claim that the problem is indicative of a more general problem for all contemporary articulations of virtue ethics. (shrink)

In recent years, the question of whether prospective parents might have a moral obligation to select against disability in their offspring has piqued the attention of many prominent philosophers and bioethicists, and a large literature has emerged surrounding this question. Rather than looking to the most common arguments given in support of a positive response to the abovementioned question, such as those focusing on the harms disability may impose on the child created, duties and role-specific obligations, and impersonal ‘harms’, a (...) less commonly made set of arguments is focused upon which looks to the harms that a decision not to select against disability may impose on others. Three different possible arguments supporting a limited duty of disability avoidance are thus identified and subsequently explored: harms to parents themselves, harms to existing family members, and harms to other existing members of society. (shrink)

As assisted reproductive technologies become increasingly popular, debate has intensified over the ethical justification for restricting access to ART based on various medical and non-medical factors. In 2010, the Australian state of Victoria enacted world-first legislation that denies access to ART for all patients with certain criminal or child protection histories. Patients and their partners are identified via a compulsory police and child protection check prior to commencing ART and, if found to have a previous relevant conviction or child protection (...) order, are given a “presumption against treatment.” This article reviews the legislation and identifies arguments that may be used to justify restricting access to ART for various reasons. The arguments reviewed include limitations of reproductive rights, inheriting undesirable genetic traits, distributive justice, and the welfare of the future child. We show that none of these arguments justifies restricting access to ART in the context of past criminal history. We show that a “presumption against treatment” is an unjustified infringement on reproductive freedom and that it creates various inconsistencies in current social, medical, and legal policy. We argue that a state-enforced policy of restricting access to ART based on the non-medical factor of past criminal history is an example of unjust discrimination and cannot be ethically justified, with one important exception: in cases where ART treatment may be considered futile on the basis that the parents are not expected to raise the resulting child. (shrink)

An objection often is raised against the use of reproductive technology to create "nontraditional families," as in ovum donation for postmenopausal women or postmortem artificial insemination. The objection states that conceiving children in such circumstances is harmful to them because of adverse features of these nontraditional families. A similar objection is raised when parents, through negligence or willful disregard of risks, create children with serious genetic diseases or other developmental handicaps. It is claimed that such reproduction harms the children who (...) are created. In reply to this Harm to the Child Argument, it has been pointed out that the procreative acts that supposedly harm the child are the very acts that create the child. This reply has been developed into an argument that, in most of the types of cases under consideration, creating the child does not harm her. This reply, the No Harm Argument, has been stated in three main ways, and it is one of the most misunderstood arguments in bioethics. This paper examines the main rebuttals that have been made to the No Harm Argument and argues that none of them is successful. (shrink)

Disability activists influenced by queer theory and advocates of “human enhancement” have each disputed the idea that what is “normal” is normatively significant, which currently plays a key role in the regulation of pre-implantation genetic diagnosis (PGD). Previously, I have argued that the only way to avoid the implication that parents have strong reasons to select children of one sex (most plausibly, female) over the other is to affirm the moral significance of sexually dimorphic human biological norms. After outlining the (...) logic that generates this conclusion, I investigate the extent to which it might also facilitate an alternative, progressive, opening up of the notion of the normal and of the criteria against which we should evaluate the relative merits of different forms of embodiment. This paper therefore investigates the implications of ideas derived from queer theory for the future of PGD and of PGD for the future of queerness. (shrink)

Ever since the publication of Derek Parfit’s Reasons and Persons, bioethicists have tended to distinguish between two different ways in which reproductive technologies may have implications for the...

We consider whether intervening in the criminal tendency of future children is ethically justifiable. We argue that, if avoidance of.

abstract Criminal behaviour is but one behavioural tendency for which a genetic influence has been suggested. Whilst this research certainly raises difficult ethical questions and is subject to scientific criticism, one recent research project suggests that for some families, criminal tendency might be predicted by genetics. In this paper, supposing this research is valid, we consider whether intervening in the criminal tendency of future children is ethically justifiable. We argue that, if avoidance of harm is a paramount consideration, such an (...) intervention is acceptable when genetic selection is employed instead of genetic enhancement. Moreover, other moral problems in avoiding having children with a tendency to criminal behaviour, such as the prospect of social discrimination, can also be overcome. (shrink)

This article argues for the elimination of the concept of life worth living from philosophical vocabulary on three complementary grounds. First, the basic components of this concept suffer from multiple ambiguities, which hamper attempts to ground informative evaluative and classificatory judgments about the worth of life. Second, the criteria proposed to track the extension of the concept of life worth living rest on unsupported axiological assumptions and fail to identify precise and plausible referents for this concept. And third, the concept (...) of life worth living is not shown to serve any major evaluative or classificatory purpose besides those served by already available axiological concepts. By eliminating the concept of life worth living, philosophers will free themselves of the task of addressing ill-posed axiological questions and ground reflection about the worth of life on more rigorous conceptual foundations. (shrink)

In this paper I examine the prevailing assumption that there is a right to procreate and question whether there exists a coherent notion of such a right. I argue that we should question any and all procreative activities, not just alternative procreative means and contexts. I suggest that clinging to the assumption of a right to procreate prevents serious scrutiny of reproductive behavior and that, instead of continuing to embrace this assumption, attempts should be made to provide a proper foundation (...) for it. I argue that the focus of procreative activities and discourse on reproductive ethics should be on obligations instead of rights, as rights talk tends to obfuscate recognition of obligations toward others, particularly those who bear the most significant burdens of the procreative process. I examine some possible foundations of a right to procreate as well as John Robertson’s thoughtful account of “procreative liberty” but conclude that at the present time there exists no compelling account of a right to procreate. Finally, I conclude that in the absence of a satisfactory account of a right to procreate, we should refrain from grounding practices or polices on the assumption that there is such a right. (shrink)

In this paper we identify and evaluate arguments for and against offering assisted reproductive technologies , specifically IVF, to HIV discordant couples . The idea of offering ART to HIV discordant couples generates concerns about safety and public health and raises questions such as: what is an acceptable level of risk to offspring and should couples who want this assistance be subject to selection criteria; should they undergo scrutiny about their suitability as parents when those who are able to conceive (...) naturally face no such scrutiny and people with other illnesses are given access to ART? We conclude that offering ART to HIV discordant couples is likely to produce more benefit than harm and violates no ethical principles. Nevertheless, a decision to deny treatment need not constitute unjustified discrimination. (shrink)

Este artículo realiza una defensa de las axiologías centradas en el sufrimiento, que sostienen la prioridad de evitar el sufrimiento frente a la promoción de otros valores. Para ello, explica en primer lugar cómo ciertas cuestiones relativas a la creación de individuos sugieren la existencia de una asimetría entre el sufrimiento y la felicidad. Continúa describiendo un conjunto de argumentos a favor de la prioridad del sufrimiento relativos a individuos ya existentes. Asimismo, señala y responde a distintas objeciones que podrían (...) ser dirigidas contra estas axiologías. Finalmente, concluye que las posiciones centradas en el sufrimiento no están todavía lo bastante exploradas y pueden tener un gran potencial. (shrink)

This paper critically engages with how life not worth living (LNWL) and cognate concepts are used in the field of beginning-of-life bioethics as the basis of arguments for morally requiring the application of preimplantation genetic diagnosis (PGD) and/or germline genome editing (GGE). It is argued that an objective conceptualization of LNWL is largely too unreliable in beginning-of-life cases for deriving decisive normative reasons that would constitute a moral duty on the part of intending parents. Subjective frameworks are found to be (...) more suitable to determine LNWL, but they are not accessible in beginning-of-life cases because there is no subject yet. Conceptual and sociopolitical problems are additionally pointed out regarding the common usage of clear case exemplars. The paper concludes that a moral requirement for the usage of PGD and GGE cannot be derived from the conceptual base of LNWL, as strong reasons that can be reliably determined are required to limit reproductive freedom on moral grounds. Educated predictions on prospective well-being might still be useful regarding the determination of moral permissibility of PGD and/or GGE. It is suggested that due to the high significance of subjective experience in the normativity of beginning-of-life bioethics, the discipline is called to more actively realize the inclusion of people with disabilities. This regards for instance research design, citation practices, and language choices to increase the accessibility of societal debates on the reproductive ethics of genetic technologies. (shrink)

The predominant position in the reproductive rights literature argues that access to assisted reproductive technologies (ART) forms part of an individual’s right to reproduce. On this reasoning, refusal of treatment by clinicians (via provision) violates a hopeful parent’s reproductive right and discriminates against the infertile. I reject these views and suggest they wrongly contort what reproductive freedom entitles individuals to do and demand of others. I suggest these views find their origin, at least in part, in the way we define (...) “reproduction” itself. This paper critically analyses two widely accepted definitions of human reproduction and demonstrates that both are fundamentally flawed. While the process of reproduction includes the biological acts of begetting and bearing a child, I argue that it does not extend to include rearing. This reworked definition has little impact in the realm of sexual reproduction. However, it has significant ethical implications for the formulation and assignment of reproductive rights and responsibilities in the non-sexual realm in two important ways. First, a claim to access ART where one has an intention to rear a child (but does not beget or bear) cannot be grounded in reproductive rights. Second, lacking an intention to rear does not extinguish the reproductive rights and responsibilities for those who collaborate in the process. I conclude that clinicians collaborate in non-sexual reproduction at the point of triggering conception (begetting) and therefore have the right to refuse to be involved in non-sexual reproduction, in some instances, as do all reproductive collaborators. (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)

Until recently, genetics counselors and medical geneticists considered themselves lucky if they could provide parents with predictive information about a small number of severe genetic disorders. Testing and counseling were indicated primarily for conditions of thithis s sort. Out of respect for the autonomy of parental reproductive decision making, the prevailing ethic of genetic counseling stressed nondirectiveness and value neutrality As summarized by Arthur Caplan, the hallmarks of this stance includea willingness to provide testing and counseling to all who voluntarily (...) seek it, the presentation of information concerning findings in a manner that is balanced and comprehensible to patients or clients, the fair and balanced presentation of all options for action if a problem is discovered, a willingness to answer all questions asked by those seeking services, and an obligation to protect privacy and confidentiality at all times regardless of societal needs or benefits. (shrink)

Abstract It is common practice to regard participants in assisted and collaborative reproduction (gamete donors, embryologists, fertility doctors, etc.) as simply providing a desired biological product or medical service. These agents are not procreators in the ordinary sense, nor do they stand in any kind of meaningful parental relation to the resulting offspring. This paper challenges the common view by defending a principle of procreative responsibility and then demonstrating that this standard applies as much to those who provide reproductive assistance (...) in the form of medical services or gametes, as it does to coital reproducers or intending parents. Drawing on vocabulary from the common law tradition, I suggest that it may be helpful to refer to the various participants in assisted and collaborative reproduction (ACR) as accessories to procreation. Referring to the participants in ACR as accessories to procreation highlights the fact that these agents are not just providing medical services or products. They are participating in a supply chain designed to bring about new persons. I conclude by arguing that regulative standards in the fertility industry should be structured such that they permit, facilitate, and encourage agents to satisfy the requirements of procreative responsibility. Content Type Journal Article Pages 1-16 DOI 10.1007/s10677-011-9330-7 Authors Melissa Seymour Fahmy, Department of Philosophy, University of Georgia, 107 Peabody Hall, Athens, GA 30602, USA Journal Ethical Theory and Moral Practice Online ISSN 1572-8447 Print ISSN 1386-2820. (shrink)

One of the most contentious ethical issues in the neonatal intensive care unit is the withdrawal of life-sustaining treatment from infants who may otherwise survive. In practice, one of the most important factors influencing this decision is the prediction that the infant will be severely intellectually disabled. Most professional guidelines suggest that decisions should be made on the basis of the best interests of the infant. It is, however, not clear how intellectual disability affects those interests. Why should intellectual disability (...) be more important than physical disability to the future interests of an infant? Is it discriminatory to base decisions on this? This paper will try to unravel the above questions. It seems that if intellectual disability does affect the best interests of the child it must do so in one of three ways. These possibilities will be discussed as well as the major challenges to the notion that intellectual disability should have a role in such decisions. The best interests of the child can be affected by severe or profound intellectual disability. It is, though, not as clear-cut as some might expect. (shrink)

This article brings together two debates in bioethics more substantively than has been the case until now. One is the methodological debate over "principlism," i.e., the theoretical framework for analyzing and solving ethical problems proposed by Beauchamp and Childress in Principles of Biomedical Ethics. The other is the normative debate about reproductive ethics, i.e., procreative rights and obligations in a time of pervasive opportunities for making detailed choices about the properties and capacities of future people. The obvious point of bringing (...) the debates together is to show how they can illuminate each other in fruitful ways consistent with the method of reflective equilibrium endorsed in PBE. Furthermore, discussions of reproductive ethics is almost absent in PBE, making it an interesting "test case" on how principlist theory can have an impact on and be affected by confrontations with new practices and considerations in biomedicine. Reproductive ethics is especially interesting due to the so-called non-identity considerations, which pose a challenge to common morality views on harm to and respect for persons. My focus is mainly on some methodological points about the import of concrete normative discussions for formulating basic normative principles. However, I unfold a number of substantial points in order to demonstrate this. It is my impression that most writers on principlism underestimate the effect of engaging with concrete problems. Specifically, I conclude that reflecting on procreative obligations provides strong reasons for specifying the basic principles in ways that uncover new dimensions of them and not just new applications. _Key words: _principlism, reproductive ethics, non-identity problem, nonmaleficence, respect for persons. (shrink)

The purpose of this paper is to show that a decontextualized approach to ethical issues is not just unhelpful for the decision making process of real, situated human beings, but dangerous. This is so, because by neglecting the context in which people make moral decisions we run the risk of reinforcing or furthering injustices against already disadvantaged groups. To show this, I evaluate three moral obligations that our ability to obtain genetic information has made salient: the duty to obtain genetic (...) information about ourselves, the obligation to inform family members about genetic risks and the duty not to reproduce when we know that there is a high risk of transmitting a serious disease or defect. I will argue here that in ignoring the context in which these moral obligations are put into practice, and in particular the situation of women in our society, those who defend these moral duties might be furthering injustices against women. (shrink)

For now, the best way to select a child's genes is to select a potential child who has those genes, using genetic testing and either selective abortion, sperm and egg donors, or selecting embryos for implantation. Some people even wish to select against genes that are only mildly undesirable, or to select for superior genes. I call this selection drift– the standard for acceptable children is creeping upwards. The President's Council on Bioethics and others have raised the parental love objection: (...) Just as we should love existing children unconditionally, so we should unconditionally accept whatever child we get in the natural course of things. If we set conditions on which child we get, we are setting conditions on our love for whatever child we get. Although this objection was prompted by selection drift, it also seems to cover selecting against genes for severe impairments. I argue that selection drift is not inconsistent with the ideal of unconditional parental love and, moreover, that the latter actually implies that we should practise selection drift – in other words, we should try to select potential children with the best genetic endowments. My endowment argument for the second claim works from an analogy between arranging an endowment prior to conception to fund a future child's education, and arranging a genetic endowment by selecting a potential child who already has it, where in both cases the child would not have existed without the endowment. I conclude with some programmatic remarks about the nonidentity problem. (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)

Two normative principles of toleration are offered, one individual-regarding, the other group-regarding. The first is John Stuart Mill’s harm principle; the other is “Principle T,” meant to be the harm principle writ large. It is argued that the state should tolerate autonomous sacrifices of autonomy, including instances where an individual rationally chooses to be enslaved, lobotomized, or killed. Consistent with that, it is argued that the state should tolerate internal restrictions within minority groups even where these prevent autonomy promotion of (...) members of the group. Finally, it is argued that toleration excludes external protections of minority groups. (shrink)

Recent ethical and legal challenges have arisen concerning the rights of individuals over their IVF embryos, leading to questions about how, when the wishes of parents regarding their embryos conflict, such situations ought to be resolved. A notion commonly invoked in relation to frozen embryo disputes is that of reproductive rights: a right to have (or not to have) children. This has sometimes been interpreted to mean a right to have, or not to have, one's own genetic children. But can (...) such rights legitimately be asserted to give rise to claims over embryos? We examine the question of property in genetic material as applied to gametes and embryos, and whether rights over genetic information extend to grant control over IVF embryos. In particular we consider the purported right not to have one's own genetically related children from a property-based perspective. We argue that even if we concede that such (property) rights do exist, those rights become limited in scope and application upon engaging in reproduction. We want to show that once an IVF embryo is created for the purpose of reproduction, any right not to have genetically-related children that may be based in property rights over genetic information is ceded. There is thus no right to prevent one's IVF embryos from being brought to birth on the basis of a right to avoid having one's own genetic children. Although there may be reproductive rights over gametes and embryos, these are not grounded in genetic information. (shrink)

John Robertson, Children of Choice: Freedom and the New Reproductive Technologies Princeton, NJ: Princeton University Press, 1994, 281 pp.

The paper focuses on the question of whether it is morally permissible to use reproductive technologies to select children with congenital deafness. I review the arguments that have been presented to support the claims that the lack of hearing is not overall bad, that disability is caused by social discrimination rather than impairment, that the community of deaf people gives its members plenty of opportunities to lead a happy life, and that procreative decisions need not improve the world. I argue (...) that although the claims are, to a certain extent, reasonable, they fail to establish the conclusion that selecting for deafness is morally permissible. I further argue that the decision to select a deaf child is morally wrong because it results in imposed and needless dependency, that the happiness of a deaf child is conditioned by their confinement to a relatively small community, and that the deaf parents who reject their child’s potential biculturalism are motivated by questionably self-regarding reasons. (shrink)

This paper aims to argue for the thesis that it is not a priori morally justified that the first phase of space colonisation is based on sexual reproduction. We ground this position on the argument that, at least in the first colonisation settlements, those born in space may not have a good chance of having a good life. This problem does not depend on the fact that life on another planet would have to deal with issues such as solar radiation (...) or with the decrease or entire absence of the force of gravity. These issues could plausibly be addressed given that the planets or settlements we will feasibly colonise could be completely transformed through geoengineering processes. Likewise, the ability of humans to live in space could be enhanced through genetic modification interventions. Even if, however, the problems concerning survival in space were solved, we think that, at least in the first period of colonisation of space or other planets, giving birth to children in space could be a morally irresponsible choice since we argue, the life we ​​could give them might not be good enough. We contend that this is the case since when we decide to have a baby. We argue that it is not morally right to be content that our children have a minimally sufficient life worth living; before we give birth to children in space, we should make sure we can give them a reasonable chance of having a good life. This principle applies both on Earth - at least where you can choose - and for space travel. (shrink)

In this paper, I explore the “expressivist critique” of the use of prenatal testing to select against the birth of persons with impairments. I begin by setting out the expressivist critique and then highlighting, through an investigation of an influential objection to this critique, the ways in which both critics and proponents of the use of technologies of genetic selection negotiate a difficult set of dilemmas surrounding the relationship between genes and identity. I suggest that we may be able to (...) advance the debate about these technologies by becoming more aware of the ways in which this debate is itself in part a political contestation over this relationship. Ultimately, I will argue, the real force of the expressivist objection lies in its capacity to draw our attention to political questions about the role of the state and about relationships between different social groups rather than between parents and prospective children. That is to say, crucial issues, when evaluating the force of this criticism, turn out to be: the nature of the institutions which determine how decisions about prenatal selection are made; and how we think of each other, that is, what we take to be the defining characteristics of human beings. Paradoxically, arguments about the ethics of the “sorting society”, both supportive and critical, are an important arena in which these institutions and these ideas about identity are contested and shaped. An increased awareness of the reflexive nature of the process of debating these issues may assist us in better negotiating them. (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)