This paper focuses on one objection to the use of reproductive genetic technologies (RGTs): the argument known as the expressivist objection. According to this argument, the choice to use reproductive genetic technologies to prevent the birth of individuals with disabilities is an expression of disvalue for existing people with disability. Many have been persuaded by this impassioned perspective. This paper shows that this argument is misguided and so does not constitute a sound objection to the use of RGTs to prevent (...) disability in future children. It first identifies some responses to the objection that may be sound but not completely convincing to proponents of the expressivist position. It then describes a thought experiment designed to demonstrate more clearly that choosing to use RGTs to prevent disability in future children does not convey a negative message about people who have disabilities. After describing a decision that clearly does not send such a message, the paper walks through a series of cases and shows how, despite differences that might seem to be morally relevant, each is morally equivalent to the previous one with respect to the extent that it expresses disvalue for such individuals. (shrink)

With increased frequency, reproductive technologies are placing prospective parents in the position of choosing whether to bring a disabled child into the world. The most well-known objection to the act of “selecting against disability” is known as the Expressivist Argument. The argument claims that such acts express a negative or disrespectful message about disabled people and that one has a moral reason to avoid sending such messages. We have two primary aims in this essay. The first is to critically examine (...) the standard Expressivist Argument, which we analyze in terms of the expression of ableist attitudes. We distinguish three interpretations of the argument and argue that each version faces serious objections. Our second aim is to articulate two closely related arguments that also pertain to expressed ableist attitudes. The Expressive Harms Argument maintains that there is a moral reason to avoid actions that give rise to the perception of ableist attitudes in cases where this is likely to have negative consequences for disabled people. The Ableist Motivation Argument speaks against selecting against disability in cases where one would be motivated by ableist attitudes. While these two arguments face various objections, we seek to establish that they are more promising than the most natural interpretations of the Expressivist Argument. (shrink)

This paper examines potential ethical and legal issues arising during the research, develop- ment and clinical use of a proposed strategy in personalized medicine (PM): using human induced pluripotent stem cell (iPSC)-derived tissue cultures as predictive models of individ- ual patients to inform treatment decisions. We focus on epilepsy treatment as a likely early application of this strategy, for which early-stage stage research is underway. In relation to the research process, we examine issues associated with biological samples; data; health; vulnerable (...) populations; neural organoids; and what level of accuracy justifies using the iPSC-derived neural tissue system. In relation to clinical use, we examine potential uses in pre-natal screening, and effects on clinical decision-making. Although our focus is providing recommendations for researchers developing work in this area, we identify the novel issue of deciding on an acceptable accuracy level for the system. We also emphasize an issue thus far neglected in the ethics of PM: PM tends to represent treatment decisions as though they should be directed solely by biomedical information, but this in itself could be detri- mental to best personalizing treatment decisions in the clinic. (shrink)

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)

According to the expressivist argument the choice to use biotechnologies to prevent the birth of individuals with specific disabilities is an expression of disvalue for existing people with this disability. The argument has stirred a lively debate and has recently received renewed attention. This article starts with presenting the expressivist argument and its core elements. It then goes on to present and examine the counter-arguments before it addresses some aspects that have gained surprisingly little attention. The analysis demonstrates that the (...) expressivist argument has a wide range of underpinnings and that counter-arguments tend to focus on only a few of these. It also reveals an important aspect that appears to have been ignored, i.e., that people do not select foetuses based on chromosomes or other biological traits, but based on characteristics of living persons with specific disabilities. This makes it more difficult to undermine the claim that negative selection of foetuses expresses a disvaluing of persons with such disabilities. It leaves the expressivist argument with a strong bite still. (shrink)

The Genetic Information Nondiscrimination Act of 2008 prohibits most forms of discrimination on the basis of genetic information in health insurance and employment. The findings cited as justification for the act, the almost universal political support for it, and much of the scholarly literature about genetic discrimination, all betray a confusion about what is really at issue. They imply that genetic discrimination is wrong mainly because of genetic exceptionalism: because some special feature of genetic information makes discrimination on the basis (...) thereof wrong. I suggest, to the contrary, that the best arguments against genetic discrimination assume that health care is an entitlement . I do this by examining two different exceptionalist arguments for genetic nondiscrimination, showing that they do not furnish good reasons for prohibiting genetic discrimination unless one supposes that health care is an entitlement. (shrink)

This article analyzes the main reasons offered by the literature in relation to the question of whether pre-implantation genetic diagnosis and selection should be allowed in the context of assisted reproduction techniques to avoid the birth of children with disabilities. The bioethical literature faces a challenge from the disability discourse. When the oppressive social dimension of disability is taken into account, it results in a series of questions that could challenge the most settled conclusions of the bioethical debate. However, the (...) social model has not been without criticism and one of them, the underestimation of the importance of biological traits origin against a disability of social origin, resonates particularly in the debate on preimplantation genetic selection. (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)

The Japanese government and medical professionals have negative attitudes toward the provision of prenatal testing and related information due to social concern regarding discrimination against persons with disabilities. However, with the rapid increase in the number of non-invasive prenatal tests, particularly at non-certificated medical facilities, in response to the growing demand from pregnant women, the Japanese government and medical professional associations have enacted radical changes marking an active commitment to the provision of information on these services. While a major justification (...) for these policy changes is to ensure respect for reproductive autonomy and women’s self-determination, they may reinforce the concern regarding discrimination. This article investigated the argument that these new policies may reinforce discrimination and examined three objections to this argument. The results revealed that the recent policy changes, particularly for specific fetal traits, may imply a negative belief about people living with the same traits. Consequently, fundamental institutional changes are necessary. (shrink)

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

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)