This chapter contains sections titled: General Assessments of Assisted Reproduction Pre‐birth Testing Conclusion References Further reading.

In recent years, preimplantation genetic testing (PGT) of IVF embryos have gained much traction in clinical assisted reproduction for preventing various genetic defects, including Down syndrome. However, such genetic tests inevitably reveal the sex of IVF embryos by identifying the sex (X and Y) chromosomes. In many countries with less stringent IVF regulations, information on the sex of embryos that are tested to be genetically normal is readily shared with patients. This would thus present Muslim patients with unintended opportunities (...) for sex selection based on personal or social biases without any pressing need or valid medical reason. Additionally, there are other patients who claim using PGT for preventing genetic defects as a pretext or “convenient excuse,” with a secret intention to do sex selection when it is banned in their home country. Currently, non-medical sex selection is a highly-controversial and hotly debated issue in Islam, because there is generally a strong preference for having sons over daughters due to widespread cultural norms of elderly parents depending on their sons for financial support, as well as the need for male heirs to continue the family lineage within the backdrop of local patriarchal cultures. There is a risk of gender imbalance and social disequilibrium occurring in Islamic societies due to prevalent sex selection. Hence, the question is whether opportunistic sex selection with PGT would contravene Islamic ethics and principles, which will thus be discussed here. (shrink)

The purpose of this article is to ascertain and appraise the ethical issues inherent to the utilisation of preimplantation genetic diagnosis for gender selection in infertile patients anticipating undergoing a medically indicated assisted reproductive technique procedure. Performance of preimplantation genetic diagnosis per request specifically for gender selection by an infertile couple undergoing medically indicated assisted reproductive technique may not breach the principles of ethics, and is unlikely to alter the population balance of sexes.

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)

The issue of prenatal testing and selective abortion has never received open public appraisal. This is somewhat regrettable. The interest in this area, however, is rapidly growing. In part this is a result of concerns about the rate of development in genetic knowledge and questions as to its application. For instance, there will be a huge increase in the scope of conditions or features for which we will be able to screen, some of which could hardly be described as (...) significant. Further, for some time now, people with disabilities have had concerns about the practice of prenatal testing and selective abortion. This article looks at the relationship between reproductive autonomy, prenatal testing and associated practices, and the interests of people with disabilities. It asks whether such practices negatively affect the interests of such individuals, and if so, how. This is an important question for the formulation of public policy in this area. Although some groups have studied this issue in detail, policy bodies do not necessarily fully engage with their analyses. This may be a reflection of public confusion about this issue. To some degree, fear of causing offense may also inhibit both expression of public opinion and, in turn, policy analysis. This is unfortunate and needs to be acknowledged. a. (shrink)

When widespread use of sex‐selective abortion and sex selection through assisted reproduction lead to severe harms to third parties and perpetuate discrimination, should these practices be banned? In this paper I focus on India and show why a common argument for a ban on sex selection fails even in these circumstances. I set aside a common objection to the argument, namely that women have a right to procreative autonomy that trumps the state's interest in protecting other parties (...) from harm, and argue against the ban on consequentialist grounds. I perform a pairwise comparative analysis of sex selection and its plausible alternatives and argue that that the ban fails to improve the state of affairs relative to a scenario without a ban. The ban makes the situation worse, especially for mothers and their daughters. India should therefore repeal its ban on sex selection. (shrink)

Over the past decade, non-invasive prenatal testing (NIPT) has been adopted into routine obstetric care to screen for fetal sex, trisomies 21, 18 and 13, sex chromosome aneuploidies and fetal sex determination. It is predicted that the scope of NIPT will be expanded in the future, including screening for adult-onset conditions (AOCs). Some ethicists have proposed that using NIPT to detect severe autosomal AOCs that cannot be prevented or treated, such as Huntington’s disease, should only be offered to prospective (...) parents who intend to terminate a pregnancy in the case of a positive result. We refer to this as the ‘conditional access model’ (CAM) for NIPT. We argue against CAM for NIPT to screen for Huntington’s disease or any other AOC. Next, we present results from a study we conducted in Australia that explored NIPT users’ attitudes regarding CAM in the context of NIPT for AOCs. We found that, despite overall support for NIPT for AOCs, most participants were not in favour of CAM for both preventable and non-preventable AOCs. Our findings are discussed in relation to our initial theoretical ethical theory and with other comparable empirical studies. We conclude that an ‘unconditional access model’ (UAM), which provides unrestricted access to NIPT for AOCs, is a morally preferable alternative that avoids both CAM’s fundamental practical limitations and the limitations it places on parents’ reproductive autonomy. (shrink)

This article explores the impact of Dobbs on access to assisted reproductive technologies. Clinical aspects of IVF, including embryo discard and cryopreservation, preimplantation genetic testing, and selective reduction of multiple pregnancy are potentially jeopardized by a new legal landscape that protects embryos over the interest of infertility patients.

Prohibition on sex selection may well be unnecessary and oppressive as well as posing risks to women’s lives The urge to select children’s sex is not new. The Babylonian Talmud, a Jewish text completed towards the end of the fifth century of the Christian era, advises couples on means to favour the birth of either a male or a female child.1 The development of amniocentesis alerted the public in the mid-1970s to the scientific potential for prenatal determination of (...) fetal sex,2 and progressive decriminalisation of abortion afforded choice about continuation of pregnancy. The more recent emergence of preimplantation genetic diagnosis (PGD) obviates resort to abortion, and improved techniques of sperm sorting and diagnosis permit creation of zygotes that will ensure the sex of a future child. Growth of biomedical means to select the sex of future children has been accompanied by fear that such means will be employed to favour births of sons, and so perpetuate devaluation of girl children and women’s inferior family and social status. A reaction to this fear has been the demand for legal and medical professional prohibition of sex selection techniques. For instance, the Council of Europe’s Convention on Human Rights and Biomedicine3 provides in article 14 that: The use of techniques of medically assisted procreation shall not be allowed for the purpose of choosing a future child’s sex, except where serious hereditary sex-related disease is to be avoided. Legislation has been enacted in a number of countries, and proposed in others, to prohibit sex selection on non-medical grounds, such as the Prenatal Diagnostic Techniques (Regulation and Prevention of Misuse) Act, 1994 in India. In Canada, for instance, government draft legislation introduced in May 2002 proposes to make it a crime for any person, for the purpose of creating a human …. (shrink)

Background: Preimplantation genetic testing is used in In Vitro Fertilization to identify genetic abnormalities in embryos. Genetically defective embryos are not transferred to the uterus, resulting in a higher percentage of healthy babies born. Aim: to study the ethical problems of using preimplantation genetic testing in Orthodox Christian discourse. Materials and methods: An analysis of the provisions of Orthodox ethics, expressed in the church resolutions of the Russian Orthodox Church and the general church teaching on morality, was carried out in (...) the context of their application for the biotic analysis of preimplantation genetic testing. Results: Despite the fact that PGT can have positive implications for the choice of the mode of delivery later on and for the earliest possible initiation of intrauterine treatment, this practice meets with certain ethical objections in Orthodox Christian discourse. Identified genetic abnormalities of embryos in PGT encourage women to refuse to transfer the "diseased" embryo, leading ultimately to its death. The absence of intrauterine interaction between a mother and an embryo makes such a choice easily feasible. Given that Orthodox Christianity affirms the beginning of human life from the moment of conception, refusing to become pregnant with a "sick embryo" would be tantamount to its murder. In addition, among the ethical problems of PGT is the possibility of the use thereof for the embryo selection according to sex or other chosen characteristics, which also belongs to immoral actions in Orthodox Christianity. Conclusion: Thus, the possibility for Orthodox couples to participate in assisted reproductive technology must exclude the use of pre-implantation genetic testing, which is ethically unacceptable within Orthodox Christianity. The couple starting IVF should be ready to give birth and bring up such a child, who will be the result of the fertilization in vitro. (shrink)

Traditionally, two main rationales for the provision of prenatal testing and screening are identified: the expansion of women’s reproductive choices and the reduction of the burden of disease on society. With the number of prenatal tests available and the increasing potential for their widespread use, it is necessary to examine whether the reproductive autonomy model remains useful in upholding the autonomy of pregnant women or whether it allows public health considerations and even eugenic aims to be smuggled in (...) under the smokescreen of autonomy. In this article I argue that if we are serious about upholding women’s autonomy in the context of prenatal testing, what is needed is a model based on a more robust conception of reproductive autonomy, such as the one defended by Josephine Johnston and Rachel Zacharias as ‘reproductive autonomy worth having’. While Johnston and Zacharias put forward a basic outline of this conception, I apply it to the specific case of prenatal testing and show how it responds to objections levelled against the reproductive autonomy model. I argue that adopting this kind of conception is necessary to avoid fundamental challenges to women’s autonomy when it comes to prenatal screening and testing. (shrink)

Bowman-Smart et al. (2023) sketched a hypothetical scenario involving noninvasive prenatal testing (NIPT) for “non-medical” traits available for expectant parents in the near future. By critically...

In "Implementing Expanded Prenatal Genetic Testing: Should Parents Have Access to Any and All Fetal Genetic Information?," Bayefsky and Berkman argue in favor of establishing three categorie...

Contemporary mate preferences can provide important clues to human reproductive history. Little is known about which characteristics people value in potential mates. Five predictions were made about sex differences in human mate preferences based on evolutionary conceptions of parental investment, sexual selection, human reproductive capacity, and sexual asymmetries regarding certainty of paternity versus maternity. The predictions centered on how each sex valued earning capacity, ambition— industriousness, youth, physical attractiveness, and chastity. Predictions were tested in data from 37 samples drawn (...) from 33 countries located on six continents and five islands. For 27 countries, demographic data on actual age at marriage provided a validity check on questionnaire data. Females were found to value cues toresource acquisitionin potential mates more highly than males. Characteristics signalingreproductive capacitywere valued more by males than by females. These sex differences may reflect different evolutionary selection pressures on human males and females; they provide powerful cross-cultural evidence of current sex differences in reproductive strategies. Discussion focuses on proximate mechanisms underlying mate preferences, consequences for human intrasexual competition, and the limitations of this study. (shrink)

Disability rights advocates sometimes claim that prenatal tests to select against disabilities discriminate against people with disabilities. The “expressivist argument” that supports this position has been challenged on grounds of the difference between fetuses and born persons. In this essay, I explain why the expressivist argument is valid despite the questionableness of its conclusion, and why the distinction between fetuses and born persons fails to provide an adequate counterargument to the expressivist conclusion. I also consider a compelling argument for (...) prenatal testing to select against disabilities and propose a reformulation of this argument that, I think, supports prenatal testing for disabilities while avoiding discrimination against people born with disabilities. (shrink)

Jürgen Habermas has argued against prenatal genetic interventions used to influence traits on the grounds that only biogenetic contingency in the conception of children preserves the conditions that make the presumption of moral equality possible. This argument fails for a number of reasons. The contingency that Habermas points to as the condition of moral equality is an artifact of evolutionary contingency and not inviolable in itself. Moreover, as a precedent for genetic interventions, parents and society already affect children's traits, (...) which is to say there is moral precedent for influencing the traits of descendants. A veil-of-ignorance methodology can also be used to justify prenatal interventions through its method of advance consent and its preservation of the contingency of human identities in a moral sense. In any case, the selection of children's traits does not undermine the prospects of authoring a life since their future remains just as contingent morally as if no trait had been selected. Ironically, the prospect of preserving human beings as they are – to counteract genetic drift – might even require interventions to preserve the ability to author a life in a moral sense. In light of these analyses, Habermas' concerns about prenatal genetic interventions cannot succeed as objections to their practice as a matter of principle; the merits of these interventions must be evaluated individually. (shrink)

Down syndrome (Trisomy 21) is a mild to moderate intellectual disability. Historically, this condition has been a primary target for prenatal testing. However, Down syndrome has not been targeted for prenatal testing because it is an especially severe illness. The condition was just one that could be easily identified prenatally using the techniques first available decades ago. We are moving into an era in which we can prenatally test for a vast range of human traits. I argue that (...) when we can test for anything, there is no longer any reason to continue targeting Down syndrome. I present an argument based on the value of nondiscrimination. It is justified to set limits on access to prenatal information if the information is going to be used for discriminatory purposes. I use the examples of (1) prenatal testing for misogynistic fetal sex selection, and (2) homophobia-motivated prenatal testing for potential homosexuality, as compelling analogies. (shrink)

Non-medical sex selection is premised on the notion that the sexes are not interchangeable. Studies of individuals who undergo sex selection for non-medical reasons, or who have a preference for a son or daughter, show that they assume their child will conform to the stereotypical roles and norms associated with their sex. However, the evidence currently available has not succeeded in showing that the gender traits and inclinations sought are caused by a “male brain” or a “female brain”. (...) Therefore, as far as we know, there is no biological reason why parents cannot have the kind of parenting experience they seek with a child of any sex. Yet gender essentialism, a set of unfounded assumptions about the sexes which pervade society and underpin sexism, prevents parents from realising this freedom. In other words, unfounded assumptions about gender constrain not only a child’s autonomy, but also the parent’s. To date, reproductive autonomy in relation to sex selection has predominantly been regarded merely as the freedom to choose the sex of one’s child. This paper points to at least two interpretations of reproductive autonomy and argues that sex selection, by being premised on gender essentialism and/or the social pressure on parents to ensure their children conform to gender norms, undermines reproductive autonomy on both accounts. (shrink)

Recent developments in Western bioethics and biomedicine have called for the need to be culture-sensitive in handling certain bioethical issues. As a result of this anthropological turn in bioethics and biomedicine, there are cultural differences in moral attitudes such as disclosure of terminal illnesses, reproductive technologies, stem cell research, prenatal screening, genetic screening, therapeutic cloning, organ transplant, brain death, physician assisted suicide and so on.This paper offers an examination of the socio-culturally framed ways of dealing with Western and (...) African bioethics particularly as it relates to assisted reproductive technology. It focuses on the ethical issues surrounding assisted reproductive technology from an African perspective making special reference to their religious beliefs by drawing on the Christian and Islamic culture. Effort is made to distinguish between Western and African approaches to assisted reproduction stressing the fact of cultural diversity in issues relating to these reproductive techniques. It argues for the need to take social and cultural meanings embedded in various bioethical issues into consideration in arriving at different conclusions about issues in assisted reproduction in order to give room for adequate understanding.The paper concludes by emphasizing the need to acknowledge cultural diversity in bioethics giving reasons why this diversity is crucial and suggesting ways of handling this diversity. (shrink)

This article investigates the role of historical references and arguments in the current policy debate on non‐invasive prenatal testing (NIPT) in Germany. It analyses major documents and opinion statements, including the recent parliamentary debate (2019). The implementation of NIPT is accompanied by concerns and strong criticism, particularly in Germany. Many perceive the new test to be a problematic step that facilitates selective practices and is reminiscent of eugenics. Analysis of the German policy discourse shows that ‘eugenics’, and even more (...) strongly, ‘selection’, are pivotal terms for rejecting NIPT and its coverage by public health insurance. They touch on a historical dimension in public deliberation, namely the fundamental distancing from the inhuman practices of the National Socialist period and anything that resembles them. However, using these terms to criticize prenatal genetic testing is controversial, and recent discourse demonstrates their avoidance as well, with many supporters of a limited coverage by public health insurance contrasting their approach with more widespread screening. Here, ‘screening’ has a negative connotation, and functions to demarcate the debate in a way that may reflect distance from certain modes of historical reasoning, but still expresses a special need to reconcile prenatal testing with the principles of dignity, inclusion and diversity. This article aims to elucidate the concerns involved in the national debates on prenatal testing and to increase awareness of the historical dimensions of the language and reasoning with which such methods are negotiated today and in future. (shrink)

The scope of noninvasive prenatal testing (NIPT) could expand in the future to include detailed analysis of the fetal genome. This will allow for the testing for virtually any trait with a genetic contribution, including “non-medical” traits. Here we discuss the potential use of NIPT for these traits. We outline a scenario which highlights possible inconsistencies with ethical decision-making. We then discuss the case against permitting these uses. The objections include practical problems; increasing inequities; increasing the burden of choice; (...) negative impacts on the child, family, and society; and issues with implementation. We then outline the case for permitting the use of NIPT for these traits. These include arguments for reproductive liberty and autonomy; questioning the labeling of traits as “non-medical”; and the principle of procreative beneficence. This summary of the case for and against can serve as a basis for the development of a consistent and coherent ethical framework. (shrink)

The Canadian province of Quebec recently amended its Health Insurance Act to cover the costs of In Vitro Fertilization . The province of Ontario recently de-insured IVF. Both provinces cited cost-effectiveness as their grounds, but the question as to whether a public health insurance system ought to cover IVF raises the deeper question of how we should understand reproduction at the social level, and whether its costs should be a matter of individual or collective responsibility. In this article I examine (...) three strategies for justifying collective provisions in a liberal society and assess whether public reproductive assistance can be defended on any of these accounts. I begin by considering, and rejecting, rights-based and needs-based approaches. I go on to argue that instead we ought to address assisted reproduction from the perspective of the contractarian insurance-based model for public health coverage, according to which we select items for inclusion based on their unpredictability in nature and cost. I argue that infertility qualifies as an unpredictable incident against which rational agents would choose to insure under ideal conditions and that assisted reproduction is thereby a matter of collective responsibility, but only in cases of medical necessity or inability to pay. The policy I endorse by appeal to this approach is a means-tested system of coverage resembling neither Ontario nor Quebec's, and I conclude that it constitutes a promising alternative worthy of serious consideration by bioethicists, political philosophers, and policy-makers alike. (shrink)

People are worried that advances in genetics will lead to a revival of eugenics. Such worries are often associated with eugenic practices carried out early in the 20th century---the forcible sterilization of feebleminded persons in the United States and the Nazi program of Racial Hygiene. A "new eugenics" involving prenatal genetic testing and the selective abortion of fetuses diagnosed with severe genetic disorders might, nonetheless, be acceptable. In chapter one I examine the history of eugenics and discuss what might (...) make a new eugenics more tolerable. ;Chapters two and three discuss reproductive decision making by individuals . Chapter 2 investigates the morality of abortion. I conclude that the moral status of the fetus is ultimately uncertain. In exceptional circumstances, such as the case where a fetus would develop into a severely disabled infant, there are good reasons for thinking that abortion is morally permissible. It is plausible, for example, that the value of a fetal life is a function of its future quality of life. ;In chapter three I discuss what quality of life consists in. I develop a pluralistic perspective according to which quality of life is a function of multiple independent components. When deciding to bring a child into existence parents should consider the quality of life expected for the child and also take into account the likely impact on their own lives, the lives of other family members, and society as a whole. ;Chapter four asks whether or not governmental restrictions should be placed on the kinds of genetic interventions which will be permitted. A worry is that interventions aimed at enhancement would only be available to the financially fortunate and thus promote unjust social inequalities. Another worry is that the development and use of such interventions would drain medical resources away from more fruitful purposes and thus have a negative impact on aggregate utility. The social aim to promote liberty, on the other hand, speaks against the imposition of restrictions. Faced with conflicting social values, we need to think more about how to make trade-offs between liberty, equality, and aggregate utility. (shrink)

Prenatal diagnosis utilizes invasive procedures such as amniocentesis, chorionic villus sampling, cord blood sampling and pre-implantation genetic diagnosis. These techniques can diagnose serious foetal illnesses and this therefore provides valuable information to couples, helping them to prepare for the birth of an affected child. It also affords women the freedom to decide whether to terminate a pregnancy. The selective termination of foetuses with serious disabilities does not represent disability discrimination because women and parents are actually rejecting the disability, rather (...) than the foetus itself More significantly, the choice to abort a foetus with a serious illness or disability is an intensely private and personal exercise that does not and cannot be reflective of a wider public morality. Exactly the same can be said of the choice to selectively abort foetuses based solely on their sex. The private choice of women in this respect does not amount to the social devaluation of women. Firstly, it is an erroneous assumption that women in Australia prefer male babies. Secondly, even if there is a preference for male babies, banning prenatal sex selection would be treating just one of many symptoms of sexism, rather than curing the primary causes. The moral right of all women to reproductive freedom is an embodiment of their equal value in society. (shrink)

Since the decade of the 1970s, and particularly since the first successful test-tube baby in 1978, the development and use of assisted reproductive technologies have grown exponentially. Would-be parents—including those in so-called traditional male-female marriages, unmarried adults, postmenopausal women, and same-sex partnerships—who just over 20 years ago had no recourse for their fertility issues can now pursue their desires to have children with at least a partial, if not, total, genetic and/or biological relationship. Ovulation-stimulating medications, artificial insemination using the (...) sperm of a husband or unrelated donor, in vitro fertilization with embryo transfer, intracytoplasmic sperm injection, and gamete and zygote intrafallopian transfers are but a few of a host of treatment options ranging in complexity, invasiveness, and expense. And on the horizon are genetic techniques such as cloning—which was once considered “pure” science fiction but in 1997 became what some call an inevitability, with the development of mammalian cloning in the form of the now-famous Dolly the sheep. (shrink)

Medical professionals routinely offer prenatal genetic testing services to their expecting patients. In theory, this testing helps expecting parents better prepare for the birth of their child: e.g., if the child will have a disability. In practice, however, such testing often leads to the termination of pregnancies that would produce a child who has a disability. Some bioethicists believe that in light of our society’s history of poor treatment of people who have disabilities, when expecting parents use prenatal (...) testing for selective abortion and when medical professionals promote the use of such testing, they express a disparaging message to and about extant disabled people: e.g., that disabled people’s lives are... (shrink)

Reproductive counseling includes counseling of prospective parents by obstetricians, clinical geneticists, and genetic counselors regarding, for example, the use of assisted reproductive technologies, prenatal testing, and preimplantation genetic diagnosis. Two different views on wisdom and the goal of reproductive counseling are analyzed. According to the first view, the goal of reproductive counseling is to help prospective parents reach a wise decision. A specific course of action is recommended by the counselor in contrast to other possible alternatives. According to (...) the second view, the goal of reproductive counseling is not to help prospective parents reach a wise decision but to help them reach their own decision wisely. It is the prospective parents who should make the decision, and it is their value commitments that should be decisive. It is argued that the second approach is to be preferred to the first. It combines respect for autonomy with a recognition of the need for assistance in decision-making. Both the first and second views relate the goal of reproductive counseling to wisdom. A problem is, however, what wisdom more precisely means — there are many different views. A casuistic view of wisdom is investigated. This view roughly defines wisdom as practical prudence in dealing with particular cases. What characterizes a casuistic decision-making method is elaborated in more detail. Applied to the second view, a casuistic view of wisdom implies that the counselor should encourage prospective parents to take into consideration the nature of the particular problem at hand, the context of the problem, their own individual identities, their personal value commitments, and various alternative perspectives, values and arguments. (shrink)

This imaginative guide to decision-making about prenatal genomics is situated in a not-too-distant future in which parents can easily choose among embryos from gametes that have been produced in a laboratory using their own skin cells. Readers are invited into a future vision of conscientious parenting that involves testing to protect, rather than to select, a future child.

Prenatal care and the practice of prenatal genetic testing are about to be changed fundamentally. Due to several ground-breaking technological developments prenatal screening and diagnosis (PND) will soon be offered earlier in gestation, with less procedure-related risks and for a profoundly enlarged variety of targets. In this paper it is argued that the existing normative framework for prenatal screening and diagnosis cannot answer adequately to these new developments. In concentrating on issues of informed consent and the (...) reproductive autonomy of the pregnant women the ethical debate misses problems related to the clinical pathway as a whole and to implicit normative attributions to clinical actions or the function of health care professionals. If, however, ethical debate would focus on the clinical context and on the ends of PND to a larger extent, it would be able to provide a more comprehensive analysis of the ethical challenges especially of the new technologies in order to be more adequately prepared for their implementation. (shrink)

This article reads the uptake of facial-matching algorithms by fertility clinics in Spain through the lens of ‘the fertility fix’: a software fix to the social reconfiguration of kinship and a fixed capital investment made by competing fertility companies and firms. ‘The fertility fix’ is proposed as a critical, ethical lens through which to situate algorithmic facial-matching in assisted reproduction in the context of the racial politics of the face and phenotype and the spatial politics of market expansion. While (...) an ‘infertility crisis’ is often mentioned when explaining the growth of the assisted reproductive technologies (ARTs) industry, the use of donated reproductive cells is tied up in societal, ecological and economic shifts. Combining Software Studies analysis with Marxist Feminist and trans*feminist perspectives on shifting re/production dynamics, the article details the role of computational technologies in promoting certain ideas and beliefs about family and fixing certain territories of capital flow. (shrink)

This article reads the uptake of facial-matching algorithms by fertility clinics in Spain through the lens of ‘the fertility fix’: a software fix to the social reconfiguration of kinship and a fixed capital investment made by competing fertility companies and firms. ‘The fertility fix’ is proposed as a critical, ethical lens through which to situate algorithmic facial-matching in assisted reproduction in the context of the racial politics of the face and phenotype and the spatial politics of market expansion. While (...) an ‘infertility crisis’ is often mentioned when explaining the growth of the assisted reproductive technologies (ARTs) industry, the use of donated reproductive cells is tied up in societal, ecological and economic shifts. Combining Software Studies analysis with Marxist Feminist and trans*feminist perspectives on shifting re/production dynamics, the article details the role of computational technologies in promoting certain ideas and beliefs about family and fixing certain territories of capital flow. (shrink)

Background Noninvasive prenatal testing (NIPT) designed to screen for fetal genetic conditions, is increasingly being implemented as a part of routine prenatal care screening in the United States (US). However, these advances in reproductive genetic technology necessitate empirical research on the ethical and social implications of NIPT among populations underrepresented in genetic research, particularly Black women with sickle cell disease (SCD).Methods Forty (N = 40) semi-structured interviews were conducted virtually with Black women in the US (19 participants with (...) SCD; 21 participants without SCD) from June 2021 to January 2022. We employed a qualitative approach to examine the study participants’ perceptions of the potential advancement of NIPT for screening SCD in the fetus. Data were analyzed using NVivo 12 qualitative software.Results The themes revealed the complexities involving the intersectional lived experiences of SCD, prenatal care, lack of synergy among health providers, and NIPT decision-making. The results further revealed that even when Black women have shared commonalities in their lived experiences while navigating SCD and motherhood, their perceptions of NIPT screening technologies are divergent.Conclusion Expanding the ethical discourse on the social implications of NIPT is critical to fully elucidate how Black women perceive NIPT’s utility, particularly as NIPT advances to screen for SCD in the fetus. Neglecting to include Black women with genetic conditions in empirical studies on NIPT may contribute to ongoing health inequities and limit and constrain reproductive choices among Black women with and without SCD. (shrink)

BackgroundThe introduction and wide application of non-invasive prenatal testing (NIPT) has triggered further evolution of routines in the practice of prenatal diagnosis. ‘Routinization’ of prenatal diagnosis however has been associated with hampered informed choice and eugenic attitudes or outcomes. It is viewed, at least in some countries, with great suspicion in both bioethics and public discourse. However, it is a heterogeneous phenomenon that needs to be scrutinized in the wider context of social practices of reproductive genetics. In (...) different countries with their different regulatory frameworks, different patterns of routines emerge that have different ethical implications.This paper discusses an ethics of routines informed by the perspectives of organizational sociology and psychology, where a routine is defined as a repetitive, recognizable pattern of interdependent organizational actions that is carried out by multiple performers. We favour a process approach that debunks the view – which gives way to most of the concerns – that routines are always blindly performed. If this is so, routines are therefore not necessarily incompatible with responsible decision-making. Free and informed decision-making can, as we argue, be a key criterion for the ethical evaluation of testing routines. If free and informed decision-making by each pregnant woman is the objective, routines in prenatal testing may not be ethically problematic, but rather are defensible and helpful. We compare recent experiences of NIPT routines in the context of prenatal screening programmes in Germany, Israel and the Netherlands. Notable variation can be observed between these three countries (i) in the levels of routinization around NIPT, (ii) in the scope of routinization, and (iii) in public attitudes toward routinized prenatal testing.ConclusionAn ethics of routines in the field of prenatal diagnostics should incorporate and work with the necessary distinctions between levels and forms of routines, in order to develop sound criteria for their evaluation. (shrink)

Informed consent is a key condition for prenatal screening programmes to reach their aim of promoting reproductive autonomy. Reaching this aim is currently being challenged with the introduction of non-invasive prenatal testing (NIPT) in first-trimester prenatal screening programmes: amongst others its procedural ease—it only requires a blood draw and reaches high levels of reliability—might hinder women’s understanding that they should make a personal, informed decision about screening. We offer arguments for a renewed recognition and use of informed (...) consent compared to informed choice, and for a focus on value-consistent choices and personalized informational preferences. We argue for a three-step counselling model in which three decision moments are distinguished and differently addressed: (1) professionals explore women’s values concerning whether and why they wish to know whether their baby has a genetic disorder; (2) women receive layered medical-technical information and are asked to make a decision about screening; (3) during post-test counselling, women are supported in decision-making about the continuation or termination of their pregnancy. This model might also be applicable in other fields of genetic (pre-test) counselling, where techniques for expanding genome analysis and burdensome test-outcomes challenge counselling of patients. (shrink)

Informed consent is a key condition for prenatal screening programmes to reach their aim of promoting reproductive autonomy. Reaching this aim is currently being challenged with the introduction of non‐invasive prenatal testing (NIPT) in first‐trimester prenatal screening programmes: amongst others its procedural ease—it only requires a blood draw and reaches high levels of reliability—might hinder women’s understanding that they should make a personal, informed decision about screening. We offer arguments for a renewed recognition and use of informed (...) consent compared to informed choice, and for a focus on value‐consistent choices and personalized informational preferences. We argue for a three‐step counselling model in which three decision moments are distinguished and differently addressed: (1) professionals explore women’s values concerning whether and why they wish to know whether their baby has a genetic disorder; (2) women receive layered medical‐technical information and are asked to make a decision about screening; (3) during post‐test counselling, women are supported in decision‐making about the continuation or termination of their pregnancy. This model might also be applicable in other fields of genetic (pre‐test) counselling, where techniques for expanding genome analysis and burdensome test‐outcomes challenge counselling of patients. (shrink)

This paper calls fresh attention to ethical problems surrounding prenatal testing by focusing on genetic knowledge gained through evolving testing procedures. Advances in reproductive and prenatal genetic testing include non-invasive tests, such as Verifi and Materniti21, designed to gather detailed information regarding fetal DNA as early as 10 weeks. Meanwhile, a new method of chromosomal microarray has proved more reliable than karyotyping in detecting fetal abnormality. This method detects abnormalities in 1 out of every 60 pregnancies in which (...) karyotyping identified the fetus as “normal.” Chromosomal microarray directly compares fetal DNA to DNA from a presumptively “healthy person” to identify genetic deviations. The chromosomal microarray method thus assumes a human genetic blueprint—that is, a normal genotype, deviance from which is risky and open to medical diagnosis. But, according to philosopher and geneticist Jackie Leach Scully, there is no genetic blueprint for human beings. Rather, genetic variation is constant. Thus, notes Scully, genetic discourse could free medical discourse from the dictates of the binary between normal and abnormal, although mistaken belief in a genetic blueprint can foil this alternative way of speaking and thinking. Prenatal testing has received critical philosophical attention from both disability theorists and feminists. Adrienne Asch suggests that prenatal testing and diagnosis stigmatizes already-existing persons with disabilities by suggesting that bodily deviance is intolerable. Licia Carlson coined the phrase “prenatal prototypes” to describe the obfuscating results of genetic profiling carried out on the fetus. The philosophical conversation Asch and Carlson stimulate involves higher stakes now that testing uncovers fetal genotype and reveals mere genetic deviation in order to aid reproductive decision-making. I argue that prenatal testing, and especially the most recently developed testing procedures described above, forecloses Scully’s alternative discourse of genetic variation by supporting an ideal of a singular “healthy genotype,” deviance from which is to be uncovered and avoided. Mobilizing this insight by drawing on the work of feminist disability scholars like Asch and Carlson, I seek to foreground the play between norm and deviance. I expose the normalizing field of statistical risk, operating in excess of medical diagnosis, which requires potential parents to manage and avoid deviance itself. (shrink)

It is now possible to have a child without sexual intercourse. The history of this apparently new statement has been breefly synthetised.The new perspectives open ethical problems for the scientific community and a new social context for single women.

IntroductionThe assisted reproductive technology field deals with consistent and predictable gaps in knowledge. Expressing lack of knowledge with a sentence like “I don’t know” can be challenging for doctors. This study examined physicians’ negative epistemic disclaimer “non lo so” in Italian ART doctor-couple interactions. In particular, it aimed to reveal specific features of “non lo so”: function, topic, temporality, responsibility, and interactional aspects.MethodsThis was a video-based observational study. We used microanalysis of face-to-face dialogue to analyze 20 purposively selected triadic (...) consultations from a corpus of 85. This inductive analysis focused on the function, the content and some selected interactional aspects of the “non lo so”, quantifying and capturing the interaction between these qualitative features.ResultsWe found 82 doctors’ “non lo so” in the corpus. We discovered three main functions of this expression: propositional, relational, discursive. The most frequent topics raising doctors’ “non lo so” were costs, treatment-related aspects, and timing issues. In more than half of the cases, present issues emerged. The majority of “non lo so” was framed using the “I,” with doctors’ taking personal responsibility. Patients played a role in these expressions from doctors: Patients initiated more than one third of them, and in one fourth of the cases, patients followed up immediately.ConclusionOur findings may be related to characteristics of the specific field of ART. Doctors in this setting must frequently express a direct lack of knowledge to their patients, and when they do, they mean it literally. Patients contribute to such disclosures, and their responses suggest that they find them acceptable, showing that they may expect limitations in their potential to conceive. (shrink)

From 2002 to 2003, the United Kingdom's Human Fertilisation and Embryology Authority carried out a review of the available methods of sex selection, the central aims of which were, in the words of the subsequent report.

The finding that women are attracted to men older than themselves whereas men are attracted to relatively younger women has been explained by social psychologists in terms of economic exchange rooted in traditional sex-role norms. An alternative evolutionary model suggests that males and females follow different reproductive strategies, and predicts a more complex relationship between gender and age preferences. In particular, males' preferences for relatively younger females should be minimal during early mating years, but should become more pronounced as the (...) male gets older. Young females are expected to prefer somewhat older males during their early years and to change less as they age. We briefly review relevant theory and present results of six studies testing this prediction. Study 1 finds support for this gender-differentiated prediction in age preferences expressed in personal advertisements. Study 2 supports the prediction with marriage statistics from two U.S. cities. Study 3 examines the cross-generational robustness of the phenomenon, and finds the same pattern in marriage statistics from 1923. Study 4 replicates Study 1 using matrimonial advertisements from two European countries, and from India. Study 5 finds a consistent pattern in marriages recorded from 1913 through 1939 on a small island in the Philippines. Study 6 reveals the same pattern in singles advertisements placed by financially successful American women and men. We consider the limitations of previous normative and evolutionary explanations of age preferences and discuss the advantages of expanding previous models to include the life history perspective. (shrink)

Noninvasive prenatal screening using cell-free DNA, which analyzes placental DNA circulating in maternal blood to provide information about fetal chromosomal disorders early in pregnancy and without risk to the fetus, has been hailed as a potential “paradigm shift” in prenatal genetic screening. Commercial provision of cell-free DNA screening has contributed to a rapid expansion of the tests included in the screening panels. The tests can include screening for sex chromosome anomalies, rare subchromosomal microdeletions and aneuploidies, and most recently, (...) the entire fetal genome. The benefits of this screening tool are generally framed, by both providers and commercial laboratories, as enhancing reproductive autonomy and choice by providing an earlier, simpler, and more accurate screening while potentially reducing the need for invasive follow-up testing. The majority of the literature has explored these issues empirically or conceptually from a European or North American vantage point, one that assumes normative priorities such as individual reproductive autonomy and the clinical availability of maternal health care or prenatal screening programs within which cell-free DNA screening is offered. While its implementation has raised both challenges and opportunities, very little is known about real-world experiences and the implications of the rapid introduction of cell-free DNA screening outside of North America and Europe, especially in low- and middle-income countries. To begin addressing this gap in knowledge, we organized a four-day international workshop to explore the ethical, legal, social, economic, clinical, and practical implications of the global expansion of cell-free DNA screening. We describe eight key insights that arose from the workshop. (shrink)

The use of genomic testing in pregnancy is increasing, giving rise to questions over how the information that is generated should be offered and returned in clinical practice. While these tests provide important information for prenatal decision-making, they can also generate information of uncertain significance. This paper critically examines three models for approaching the disclosure of variants of uncertain significance (VUS), which can arise from forms of genomic testing such as prenatal chromosomal microarray analysis (CMA). Contrary to prevailing (...) arguments, we argue that respect for reproductive autonomy does not justify adopting a model on which an offer to disclose VUS is a routine part of genetic counselling. Instead, we contend that a commitment both to solidarity between healthcare providers and pregnant women and to the acceptance of a novel principle of caution under normative uncertainty means that we should instead adopt a model of VUS disclosure that imposes a strong presumption against offering to disclose VUS. The upshot of this is that it should be standard practice to only offer to disclose VUS when this is requested by the woman undergoing CMA. We defend our position against claims that arise from an alleged right to such information and that a presumption against an offer will lead to inequity. (shrink)

Non-invasive prenatal testing is at the forefront of prenatal screening. Current uses for NIPT include fetal sex determination and screening for chromosomal disorders such as trisomy 21. However, NIPT may be expanded to many different future applications. There are a potential host of ethical concerns around the expanding use of NIPT, as examined by the recent Nuffield Council report on the topic. It is important to examine what NIPT might be used for before these possibilities become consumer reality. (...) There is limited research exploring views of women on possible future uses of NIPT, particularly those of women who have undergone NIPT. In this study, we examined the views of women who undertook NIPT previously on the acceptability of and interest levels in using NIPT for a number of current and possible future applications. These included several medical conditions encompassing psychiatric, neurodevelopmental and adult-onset conditions as well as non-medical traits such as intelligence. One thousand women were invited to participate and 235 eligible surveys were received. Women generally reported an interest in using NIPT for medical conditions that severely impacted quality of life and with an onset earlier in life and stressed the importance of the accuracy of the test. Concerns were raised about the use of NIPT for non-medical traits. Respondents indicated that termination of pregnancy was not their only reason for testing, particularly in the case of sex. These results can further inform the ethical debate around the increasing integration of NIPT into healthcare systems. (shrink)

Singapore, a highly affluent island city-state located in Southeast Asia, has increasingly leveraged new assisted reproductive technologies (ART) to overcome its dismal fertility rates in recent years. A new frontier in ART is preimplantation genetic testing (PGT) for polygenic risk scores (PRS) to predict complex multifactorial traits in IVF (in vitro fertilisation) embryos, such as type 2 diabetes, cardiovascular diseases and various other characteristics like height, intelligence quotient (IQ), hair and eye colour. Unlike well-known safety risks with human genome (...) editing, there are negligible risks with PGT-P, because there are no man-made genetic modifications that can be transmitted to future generations. Nevertheless, the current efficacy of using PGT-P to select IVF embryos for either increased or decreased probability of developing specific polygenic traits is still far from certain. Hence, the regulatory safeguards proposed here will be based on the assumption that the efficacy of this new technology platform has already been validated. These include: (1) restricting the application of PGT-P only for prevention of clinically relevant polygenic disease traits, (2) securely blocking patients’ access to the raw genomic DNA sequencing data of their IVF embryos, (3) validating diagnosis of polygenic disease traits in the prospective parents/grandparents of IVF embryos, and restricting PGT-P only for preventing specifically diagnosed polygenic disease traits and (4) mandating rigorous and comprehensive genetic counselling for IVF patients considering PGT-P. There is an urgent and dire need to prevent abuse of the PGT-P technique, as well as protect the interests and welfare of patients if its clinical application is to be permitted in the country. (shrink)

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)

People with cognitive disabilities and their advocates often express uneasiness about prenatal testing and the selective termination of pregnancies because the fetus has a cognitively disabling condition. There are high rates of abortion in such circumstances, and new forms of noninvasive prenatal testing (NIPT) have been introduced to improve the detection of genetic conditions. This chapter argues that the feeling of disquiet about prenatal testing and selective termination is justified. Philosophers working in the field of bioethics often (...) offer reassurance that such feelings are unjustified. This chapter shows that such reassurances fail and presents an argument that bias against people with cognitive disability plays a role in prenatal decision-making. Feelings of disquiet are justified because it is justified to object to bias that is otherwise directed at oneself. (shrink)

Background Prenatal genetic testing, in particular non-invasive prenatal testing (NIPT), as well as screening for risks associated with pregnancy, and counseling, play pivotal roles in reproductive healthcare, offering valuable information about the health of the fetus to expectant parents. This study aims to delve into the perspectives and experiences of women considering genetic testing and screening during pregnancy, focusing on their decision-making processes and the implications for informed consent. Methods A nationwide qualitative study was conducted in Switzerland, involving (...) in-depth interviews with women who were 1 to 2 years post-partum, covered by basic compulsory Swiss insurance, including women with a migration background. Thematic analysis was employed to identify key themes and patterns in the data. Results The findings underscore the significance of effective communication during prenatal counseling, suggesting that healthcare providers could not only convey technical information but also support women in their decision-making processes. Women need comprehensive information about genetic testing and its implications, as well as the reasons for screening during pregnancy, as there might be a need to bridge knowledge gaps and clarify misconceptions. Furthermore, the study highlights the multifaceted nature of decision-making, with women considering factors such as uncertainty, values, emotional responses, and societal support systems. The concept of acceptance emerged as a crucial theme, with some women expressing their readiness to love and accept their child, regardless of genetic anomalies or disabilities. Conclusion This study offers valuable insights into the perspectives and needs of women regarding prenatal genetic testing, screening, and counseling in Switzerland. It underscores the importance of enhancing the clinical interaction and informed consent process by providing comprehensive information, addressing misconceptions, and supporting women in decision-making about pregnancy management and the management of the child’s health, following prenatal genetic testing, including NIPT. These findings can inform healthcare providers and policymakers in improving the quality of prenatal counseling, ensuring informed consent, and supporting women in making well-informed and meaningful decisions about genetic testing, and on the use of screening during pregnancy. (shrink)

Policy-makers have attempted to frame the ethical requirements that are relevant to the creation of human beings via reproductive technologies. Various reports and laws enacted in New Zealand, Canada, Australia, and Britain have introduced tests for how we should weigh child welfare when using these technologies. A number of bioethicists have argued that child welfare should be interpreted as a “best interests” test. Others have argued that there are ethical reasons why we should abandon this kind of test. I will (...) argue that at least some of the relevant policy can be interpreted as requiring those wishing to exercise their procreative liberty to have a reasonable plan to care and nurture any resulting child, thereby respecting the internal preconditions of that liberty. This interpretation of child welfare requirements answers some of the ethical worries about a child welfare test. (shrink)

Moral and social arguments weigh heavily against performing medical procedures solely for purposes of sex selection. The medical profession has a responsibility to abandon its posture of ethical neutrality and take a firm stand now against sex selection.

Reliable medically assisted sex selection which does not involve abortion or infanticide has recently become available, and has been used for non-medical reasons. This raises questions about the morality of sex selection for non-medical reasons. But reasonable people continue to disagree about the answers to these questions. So another set of questions is about what the law should be on medically assisted sex selection for non-medical reasons in the face of reasonable disagreement about the morality (...) of sex selection. This paper sketches a way of thinking about what the law should be, and concludes, contrary to what the law is in many places, that medically assisted sex selection for non-medical reasons ought to be legal. (shrink)