Ableist attitudes and structures regarding disability are increasingly recognized across all sectors of healthcare delivery. After Dobbs, novel questions arose in the USA concerning how to protect reproductive autonomy while avoiding discrimination against and devaluation of disabled persons. As a case study, we examine the Louisiana’s Department of Public Health August 1st Emergency Declaration, “List of Conditions that shall deem an Unborn Child ‘Medically Futile.’” We raise a number of medical, ethical, and public health concerns that lead us to argue (...) the declaration should be rescinded. The ethically objectionable declaration provides valuable lessons concerning how to uphold both reproductive and disability justice in a post-Dobbs landscape. (shrink)

In the last decade, preimplantation genetic testing have become widely used and in 2005 constituted 5 percent of all in vitro fertilization cycles performed in Europe. Their diffusion, however, is not homogenous; while in some countries they are prohibited and in others hardly implemented, Spain performs 33 percent of all the PGD/pgs. While policy guidelines and mainstream bioethics address PGD from a patient choice perspective, disability studies insist on PGD’s potentiality for discrimination. Alternatively, other authors have explored PGD/pgs from the (...) perspective of geneticization but little work has been done on how PGD/pgs are framed by the members of national regulatory bodies. Combining the analysis of juridical documents with semistructured interviews with members of the Spanish National Assisted Reproduction Committee, this study suggests that the remarkable diffusion of PGD/pgs in Spain may be largely due to the interaction between the growing momentum enjoyed by embryonic stem cell research and a vibrant expansion of IVF business along the Mediterranean coast. In this process, genetic issues per se seem to play a minor role, although the prevention of genetic diseases now constitutes the master narrative underpinning the extension of PGD from monogenic, early onset, diseases to polygenic, late-onset, ones. (shrink)

This is a critical response to "Defending Eugenics", published in MBR in 2018.

Medicalization occurs when an aspect of embodied humanity is scrutinized by the medical industry, claimed as pathological, and subsumed under medical intervention. Numerous critiques of medicalization appear in academic literature, often put forth by bioethicists who use a variety of “lenses” to make their case. Feminist critiques of medicalization raise the concerns of the politically disenfranchised, thus seeking to protect women—particularly natal sex women—from medical exploitation. This article will focus on three feminist critiques of medicalization, which offer an alternative narrative (...) of sickness and health. I will first briefly describe the philosophical origins of medicalization. Then, I will present three feminist critiques of medicalization. Liberal feminism, trans feminism, and crip feminism tend to regard Western medicine with a hermeneutics of suspicion and draw out potential harms of medicalization of reproductive sexuality, gender, and disability, respectively. While neither these branches of feminism—nor their critiques—are homogenous, they provide much-needed commentaries on phallocentric medicine. I will conclude the paper by arguing for the continual need for feminist critiques of medicalization, using uterus transplantation as a relevant case study. (shrink)

The view that it is better for life to be created free of disability is pervasive in both common sense and philosophy. We cast doubt on this view by focusing on an influential line of thinking that manifests it. That thinking begins with a widely-discussed principle, Procreative Beneficence, and draws conclusions about parental choice and disability. After reconstructing two versions of this argument, we critique the first by exploring the relationship between different understandings of well-being and disability, and the second (...) by more briefly focusing on the idea of a significant reason. By placing these results against the broader historical and ongoing contexts in which the lives of those with disabilities have been deemed of inferior quality, we conclude with a call for greater humility about disability and well-being in thought and practice. (shrink)

Does disability make a person worse off? I argue that the best answer is yes AND no, because we can be worse off in two conceptually distinct ways. Disabilities usually make us worse off in one way (typified by facing hassles) but not in the other (typified by facing loneliness). Acknowledging two conceptually distinct ways to be worse off has fundamental implications for philosophical theories of well-being. (This paper won the APA’s Routledge, Taylor & Francis Prize in 2017.).

The idea that a world in which everyone was born “perfect” would be a world in which something valuable was missing often comes up in debates about the ethics of technologies of prenatal testing and preimplantation genetic diagnosis . This thought plays an important role in the “disability critique” of prenatal testing. However, the idea that human genetic variation is an important good with significant benefits for society at large is also embraced by a wide range of figures writing in (...) the bioethics literature, including some who are notoriously hostile to the idea that we should not select against disability. By developing a number of thought experiments wherein we are to contemplate increasing genetic diversity from a lower baseline in order to secure this value, I argue that this powerful intuition is more problematic than is generally recognized, especially where the price of diversity is the well-being of particular individuals. (shrink)

Noninvasive prenatal testing promises to enhance women's reproductive autonomy by providing genetic information about the fetus, especially in the detection of genetic impairments like Down syndrome. In practice, however, NIPT provides opportunities for intensified manipulation and control over women's reproductive decisions. Applying Miranda Fricker's concept of epistemic injustice to prenatal screening, this article analyzes how medical professionals impair reproductive decision-making by perpetuating testimonial injustice. They do so by discrediting positive parental testimony about what it is like to raise a child (...) with DS. We argue that this testimonial injustice constitutes a twofold harm: people with DS and their family members who claim that parenting a child with DS may be a rewarding and joyous experience are harmed when they are systematically silenced, disbelieved, and/or denied epistemic credibility by medical professionals, and pregnant women are harmed since they might make poorly informed choices without access to all relevant information. The broader implication of the analysis is that epistemic justice is a precondition of reproductive autonomy. We conclude by calling for federal oversight of the acquisition and dissemination of information that prospective parents receive following a positive diagnosis of DS to ensure that it is comprehensive and up to date. (shrink)

Some disability rights advocates criticise prenatal testing and selective abortion on the grounds that these practices express negative attitudes towards existing persons with disabilities. Disability rights advocates also commonly criticise and oppose physician-assisted suicide (PAS) and euthanasia on the same grounds. Despite the structural and motivational similarity of these two kinds of arguments, there is no literature comparing and contrasting their relative merits and the merits of responses to them with respect to each of these specific medical practices. This paper (...) undertakes such a comparison. My thesis is that a number of potentially significant weaknesses of the expressivist argument against reproductive technologies are avoided when the argument is used against PAS. In particular, I try to show that three common criticisms of the expressivist argument applied to reproductive technologies, whatever merit they have, have even less merit when they are used to reply to the expressivist argument applied to PAS. This is important because the expressivist argument applied to the end of life scenario does not get as much attention as the argument applied to the beginning of life scenario, and yet it has a relatively stronger position. (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)

This article explores the moral significance of technology, reviewing a microfluidic chip for sperm sorting and its use for non-medical sex selection. I explore how a specific material setting of this new iteration of pre-pregnancy sex selection technology—with a promised low cost, non-invasive nature and possibility to use at home—fosters new and exacerbates existing ethical concerns. I compare this new technology with the existing sex selection methods of sperm sorting and Prenatal Genetic Diagnosis. Current ethical and political debates on emerging (...) technologies predominantly focus on the quantifiable risk-and-benefit logic that invites an unequivocal “either-or” decision on their future and misses the contextual ethical impact of technology. The article aims to deepen the discussion on sex selection and supplement it with the analysis of the new technology’s ethical potential to alter human practices, perceptions and the evaluative concepts with which we approach it. I suggest that the technological mediation approach can be useful to ethically contextualize technologies and highlight the value of such considerations for the informed deliberation regarding their use, design and governance. (shrink)

I have at least four close friends who seem to be ideal qualified recipients of WET. My friends have a variety of eyes: some prosthetic, some wandering, some misaligned, some absent, some shrouded...

Trait Selective Abortions (TSA) have come under critique as a medical practice that presents potential disabled infants as burdens and lacking the potential for meaningful lives. This paper, using the author’s background as a disabled person, contends that the philosophy underpinning TSAs reflects liberal society’s lack of a theory of needs. The author argues for a care ethics based approach informed by disability analyses to engage with TSAs.

Gene-editing technologies, such as CRISPR/Cas9, are internationally ethically fraught. In the United States, policy surrounding gene-editing has yet to be implemented, while the science continues to speed ahead. However, it is not enough that policy be implemented: in order for policy to establish limits for the technology such that benefits are possible while threats are kept at bay, such policy must be ethical. In turn, the ethics of gene-editing is a culturally determined field of inquiry. This piece presents a proposal (...) for a study whose goal is to arrive at ethical policy recommendations for policymakers. To achieve this goal, this study proposes, what needs to be done is, first, to understand the full history and foundation of gene-editing by conducting a thorough legal, bioethical, and policy review for precedent assisted reproductive technologies and genetic reproductive technologies. Following this effort, an empirical study must be conducted involving careful surveys of key stakeholder groups on their knowledge and opinions of gene-editing. Such stakeholder groups must include bioethicists, medical geneticists, and lay persons, including those in the disability community. (shrink)

While fetal surgery—and pregnancy termination as a possible therapeutic alternative—have been examined in a number of studies, very few have addressed the issues and tensions that arise when prenat...

Since the 1970s, prenatal testing has been integrated into many health care systems on the basis of two competing and largely irreconcilable rationales. The reproductive autonomy rationale focuses on nondirective counseling and consent as ways to ensure that women's decisions about testing and subsequent care are informed and free of undue pressures. It also represents an easily understandable and ethically convincing basis for widespread access to prenatal testing, since the value of autonomy is well established in Western bioethics and widely (...) recognized by funders of health care. In contrast, the public health rationale approaches prenatal testing as designed to reduce the incidence of certain conditions in the population to reduce the burden of disease. This rationale emphasizes the societal consequences of reproduction and the aggregate impact of women's individual reproductive decisions on the overall health of future populations. In this essay, I argue that, despite what could be seen as a persistent failure to meet the ideals of reproductive autonomy, resisting the public health rationale as a basis for prenatal screening is ethically and pragmatically crucial. I recommend policy mechanisms that can enhance reproductive autonomy at a societal level to support choice at the individual level. (shrink)

This article will review reasons why it is argued that the law on abortion on the grounds of disability is discriminatory, as well as recent unsuccessful attempts to address this discrimination in the law. These attempts include ones which would have moderately restricted access to abortion in certain limited cases, and another that might have opened to door to a number of different possibilities, including both to options that could have restricted access to abortion, and to other options that might (...) have increased access. Finally, this article will also examine reasons why some of the most important challenges surrounding disability equality cannot be sufficiently addressed through legal change alone. While there are strong reasons to support some form of change in the law, a more foundational change in values is necessary if we want to live in a more ethical society that is truly capable of welcoming disabled children. (shrink)

This article will review reasons why it is argued that the law on abortion on the grounds of disability is discriminatory, as well as recent unsuccessful attempts to address this discrimination in the law. These attempts include ones which would have moderately restricted access to abortion in certain limited cases, and another that might have opened to door to a number of different possibilities, including both to options that could have restricted access to abortion, and to other options that might (...) have increased access. Finally, this article will also examine reasons why some of the most important challenges surrounding disability equality cannot be sufficiently addressed through legal change alone. While there are strong reasons to support some form of change in the law, a more foundational change in values is necessary if we want to live in a more ethical society that is truly capable of welcoming disabled children. (shrink)

This essay re-examines the disability critique of prenatal and pre-implantation screening in light of evidence about the larger context in which fertility and reproductive healthcare is rendered in the U.S. It argues that efforts to identify acceptable criteria for trait-based selection or otherwise impose reasons-based limitations on reproductive choice should be avoided because such limitations tend to perpetuate the discrimination encountered by adults with disabilities seeking fertility and reproductive health services.

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)

It has been argued by some authors that our reaction to deaf parents who choose deafness for their children ought to be compassion, not condemnation. Although I agree with the reasoning proposed I suggest that this practice could be regarded as unethical. In this article, I shall use the term “dysgenic” as a culturally imposed genetic selection not to achieve any improvement of the human person but to select genetic traits that are commonly accepted as a disabling condition by the (...) majority of the social matrix; in short as a handicap. As in eugenics, dysgenics can be achieved in a positive and a negative way. Positive dysgenics intends to increase the overall number of people with a particular genetic trait. Marriage between deaf people or conceiving deaf children through reproductive technology are examples of positive dysgenics. Negative dysgenics can be obtained through careful prenatal or pre-implantation selection and abortion (or discarding) of normal embryos and foetuses. Only deaf children would be allowed to live. If dysgenics is seen as a programmed genetic intervention that undesirably shapes the human condition – like deliberately creating deaf or dwarf people – the professionals involved in reproductive technologies should answer the question if this should be an accepted ethical practice because the basic human right to an open future is violated. (shrink)

This article is written in response to the idea that selective termination may be eugenic. It points out that a mixture of motives and goals may inform screening programmes and selective termination for fetal abnormality without the intention being “eugenic”. The paper locates modern genetics within the tradition of humanist medicine by suggesting that parents who choose to terminate a pregnancy because of fetal abnormalities are not making moral judgments about those who are living with these abnormalities already. Rather they (...) are making judgments about their own lives and the lives of their children in relation to this genetic disorder. It concludes by introducing several caveats about the counselling that parents receive after the results of the testing and suggests that counselling inevitably contains a directive element because of the nature of the information covered. (shrink)