Prenatal testing: Does reproductive autonomy succeed in dispelling eugenic concerns?

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.     

Rethinking counselling in prenatal screening: An ethical analysis of informed consent in the context of non-invasive prenatal testing (NIPT)

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.     

The ethics of cesarean section on maternal request: a feminist critique of the American College of Obstetricians and Gynecologists' position on patient-choice surgery

In recent years, the medical establishment has been speaking in favor of women's autonomy in childbirth by advocating cesarean delivery on maternal request (CDMR). This paper offers to look at the ethical dimension of CDMR through a feminist critique of the medicalization of childbirth and its influence on present-day medical ethics. I claim that the medicalization of childbirth reflects a sexist bias with regard to conceptions of the body and needs to be used with caution when applied to women's reproductive health. I then use this perspective to critically analyze the position of the American College of Obstetricians and Gynecologists (ACOG) on the ethics of decision-making in patient-choice surgery. I claim that informed consent cannot be meaningfully exercised unless women are made aware of the sexist underpinnings of the medical model of childbirth and its influence on the ethical reasoning of the American College of Obstetricians and Gynecologists. I also express concern about the effects of normalizing patient-choice cesarean sections on the choices available to pregnant women using as examples the institutional rules on mandatory cesarean sections for women with a previous cesarean delivery or breech presentation. I conclude with a call for more research into the real cost of convenience in CDMR, particularly as our increasingly strained publicly funded healthcare system would greatly benefit from the de-medicalization of normal body functions rather than an increased dependence on costly surgical technology.     

African communal basis for autonomy and life choices

I argue that the metaphysical capacity of autonomy is not intrinsically valuable; it is valuable only when used in relation to a community's values and instrumentally for making the proper choices that will promote one's own and the community's well‐being. I use the example of the choice to take one's life by suicide to illuminate this view. I articulate a plausible African conception of personhood as a basis for the idea of relational autonomy. I argue that this conception is better understood as a social‐moral thesis, and not a metaphysical thesis. A metaphysical thesis gives an account of the abstract nature of an atomic individual, his agency, and rational choice. The social‐moral thesis indicates that personhood and autonomy are positive and relational to the life plans, well‐being, material conditions, and the best means for achieving them that are made available and possible by harmonious living in a community. This idea of autonomy is not just having the capacity of freewill; it also involves how such freewill is used, in terms of how an individual's choices are guided by internalized communal values.     

The aims of expanded universal carrier screening: Autonomy,prevention, and responsible parenthood

Expanded universal carrier screening (EUCS) entails a population‐wide screening offer for multiple disease‐causing mutations simultaneously. Although there is much debate about the conditions under which EUCS can responsibly be introduced, there seems to be little discussion about its aim: providing carrier couples with options for autonomous reproductive choice. While this links in with current accounts of the aim of foetal anomaly screening, it is different from how the aim of ancestry‐based carrier screening has traditionally been understood: reducing the disease burden in the population. The reasons why the aim of EUCS is presented in terms of ‘autonomy’ rather than ‘prevention’ have not been spelled out in the literature. This paper seeks to fill this gap by considering the morally relevant similarities and dissimilarities between foetal anomaly screening, ancestry‐based carrier screening and EUCS. When carrier screening is performed in the prenatal period, enhancing autonomy appears the most appropriate aim of EUCS, as the alternative of ‘prevention through selective abortion’ would urge women to terminate wanted pregnancies. However, when screening is conducted in the preconception period, carrier couples can avoid the birth of affected children by other means than selective abortion, for instance preimplantation genetic diagnosis. To the extent that this increased control over passing on a genetic disorder raises questions of parental responsibility, it seems necessary that the account of the aims of EUCS is wider than only in terms of enhancing reproductive autonomy.     

FINDING AUTONOMY IN BIRTH

Over the last several years, as cesarean deliveries have grown increasingly common, there has been a great deal of public and professional interest in the phenomenon of women 'choosing' to deliver by cesarean section in the absence of any specific medical indication. The issue has sparked intense conversation, as it raises questions about the nature of autonomy in birth. Whereas mainstream bioethical discourse is used to associating autonomy with having a large array of choices, this conception of autonomy does not seem adequate to capture concerns and intuitions that have a strong grip outside this discourse. An empirical and conceptual exploration of how delivery decisions ought to be negotiated must be guided by a rich understanding of women's agency and its placement within a complicated set of cultural meanings and pressures surrounding birth. It is too early to be 'for' or 'against' women's access to cesarean delivery in the absence of traditional medical indications – and indeed, a simple pro- or con- position is never going to do justice to the subtlety of the issue. The right question is not whether women ought to be allowed to choose their delivery approach but, rather, taking the value of women's autonomy in decision-making around birth as a given, what sorts of guidelines, practices, and social conditions will best promote and protect women's full inclusion in a safe and positive birth process.     

On Taylor's justification of medical informed consent

In contemporary Western biomedical ethics, informed consent practices are commonly justified in terms of the intrinsic value of patient autonomy. James Stacey Taylor maintains that this conception of the moral grounding of medical informed consent is mistaken. On the basis of his reasoning to that effect, Taylor argues that medical informed consent is justified by the instrumental value of personal autonomy. In this article, I examine whether Taylor's justification of medical informed consent is plausible.     

Psychosocial correlates of pregnant women's attitudes toward prenatal maternal serum screening and invasive diagnostic testing: beyond traditional risk status

This study examined whether psychosocial variables predict pregnant women's attitudes toward maternal serum screening and invasive diagnostic testing, beyond the influence of traditional obstetric risk status (based on advanced maternal age, history of genetic disorders, etc.). In a sample of 612 pregnant women (66.5% high risk, 33.5% low risk) we assessed responses to hypothetical scenarios of invasive testing following normal or abnormal maternal serum screening. We also assessed psychosocial variables stemming from the theory of planned behavior (e.g., knowledge, concern for fetus, attitudes toward termination, health locus of control). Overall, two thirds of the women would want serum screening. Follow-up invasive diagnostic testing would be sought by 37.2% of the women after a negative screening, and by 75.0% after a positive screening. As expected, traditional risk status predicted desire for screening and also invasive testing following either a negative or positive screen. Yet, controlling for risk status, many psychosocial variables predicted a women's interest in screening and in invasive testing: more knowledge about prenatal testing, concern about fetal health, willingness to terminate a pregnancy, and an internal or medical profession health locus of control. We conclude that psychosocial variables influence women's desire for screening or invasive testing beyond traditional risk status.     

TOWARD A GENDER-SENSITIVE ASSISTED REPRODUCTION POLICY

The recent case of the UK woman who lost her legal struggle to be impregnated with her own frozen embryos, raises critical issues about the meaning of reproductive autonomy and the scope of regulatory practices. I revisit this case within the context of contemporary debate about the moral and legal dimensions of assisted reproduction. I argue that the gender neutral context that frames discussion of regulatory practices is unjust unless it gives appropriate consideration to the different positions women and men occupy in relation to reproductive processes and their options for autonomous choice. First, I consider relevant legal rulings, media debate, and scholarly commentary. Then I discuss the concept of reproductive autonomy imbedded in this debate. I argue that this concept conflates informed consent and reproductive autonomy, thereby providing an excessively narrow reading of autonomy that fails to give due regard to relations among individuals or the social, political and economic environment that shapes their options. I contrast this notion of autonomy with feminist formulations that seek to preserve respect for the agency of individuals without severing them from the conditions of their embodiment, their surrounding social relationships, or the political contexts that shape their options. Taking these considerations into account I weigh the advantages of regulation over the commercial market arrangement that prevails in some countries and suggest general guidelines for a regulatory policy that would more equitably resolve conflicting claims to reproductive autonomy.     

EGG FREEZING: A BREAKTHROUGH FOR REPRODUCTIVE AUTONOMY?

This article describes the relatively new technology of freezing human eggs and examines whether egg freezing, specifically when it is used by healthy women as 'insurance' against age-related infertility, is a legitimate exercise of reproductive autonomy. Although egg freezing has the potential to expand women's reproductive options and thus may represent a breakthrough for reproductive autonomy, I argue that without adequate information about likely outcomes and risks, women may be choosing to freeze their eggs in a commercially exploitative context, thus undermining rather than expanding reproductive autonomy.     

孕中期超声联合无创产前基因筛查在检出染色体异常胎儿中的应用价值

摘要 目的：孕中期超声联合无创产前基因筛查（NIPT）在染色体异常胎儿检出中的应用价值。方法：选取2019年8月～2021年12月在石家庄市妇幼保健院产前检查的2000例孕中期孕妇,均接受超声检查和NIPT筛查。以羊水穿刺或引产后高通量测序结果为金标准,四格表法分析孕中期超声联合NIPT在染色体异常胎儿检出中的应用价值。结果：2000例孕中期孕妇中,超声检查共检出软指标异常37例,结构指标异常30例。NIPT筛查检出高风险孕妇17例,其中21-三体综合征11例、18-三体综合征6例。超声软指标和结构指标联合NIPT诊断胎儿染色体异常的灵敏度、特异度、阳性预测值、阴性预测值、漏诊率、误诊率、准确率分别为95.00%、99.95%、95.00%、99.95%、5.00%、0.05%、99.90%。结论：联合孕中期超声和NIPT可提高检出高风险染色体异常胎儿的灵敏度,降低漏诊率,对于早发现染色体异常胎儿具有重要价值,进而提高生育质量。     

Changing our perspective: Is there a government obligation to promote autonomy through the provision of public prenatal screening?

In many countries, prenatal testing for certain fetal abnormalities is offered via publicly funded screening programs. The concept of reproductive autonomy is regarded as providing a justificatory basis for many such programs. The purpose of this study is to re‐examine the normative basis of public prenatal screening for fetal abnormalities by changing our perspective from that of autonomy to obligation. After clarifying the understanding of autonomy adopted in the justification for public prenatal screening programs, we identify two problems concerning this justification: first, the extent to which the government is obliged to meet this demand is not evident; and, second, it is not clear whether the provision of public screening is the most appropriate way to promote autonomy. Next, to tackle these problems, we focus on Onora O’Neill’s argument of rights and obligations. Drawing on this argument, we show that, in addressing the problems above, it is important to change our normative perspective from rights or autonomy to obligation. Our argument will show that since the government does not have an incontrovertibly fundamental obligation to promote autonomy, this obligation needs to be constrained in terms of compatibility with other fundamental obligations. In addition, even if a government is obliged to promote autonomy to some degree, there could be more appropriate means to achieve it than providing public prenatal screening; therefore, it is not necessary for government obligations to extend to the provision of public prenatal screening.     

Prenatal screening for neural tube defects: perceptions of potential recipients.

The interpretation of prenatal screening and follow-up diagnostic testing for neural tube defects is relatively complex and presents unusual demands in terms of informed utilization by pregnant women. Such demands could impact differentially on individuals of different socioeconomic status or cultural values. Accordingly, a two-part questionnaire, interrupted by presentation of educational material on neural tube defects and prenatal screening, was presented to female sophomore medical students and to reproductive-age women whose children were served at Howard University Hospital. Student subjects favored prenatal testing, whereas clinic subjects were divided on testing both before and after reading the educational material. Both groups anticipated prenatal screening in future pregnancies, but clinic subjects were ambiguous about the need for diagnostic follow-up after the determination of high maternal serum alpha-fetoprotein. Clinic subjects were more hesitant than students to employ abortion as a means of intervention and did not distinguish between spina bifida and anencephaly in this regard.     

Sex selection and restricting abortion and sex determination

Sex selection in India and China is fostered by a limiting social structure that disallows women from performing the roles that men perform, and relegates women to a lower status level. Individual parents and individual families benefit concretely from having a son born into the family, while society, and girls and women as a group, are harmed by the widespread practice of sex selection. Sex selection reinforces oppression of women and girls. Sex selection is best addressed by ameliorating the situations of women and girls, increasing their autonomy, and elevating their status in society. One might argue that restricting or prohibiting abortion, prohibiting sex selection, and prohibiting sex determination would eliminate sex selective abortion. But this decreases women's autonomy rather than increases it. Such practices will turn underground. Sex selective infanticide, and slower death by long term neglect, could increase. If abortion is restricted, the burden is placed on women seeking abortions to show that they have a legally acceptable or legitimate reason for a desired abortion, and this seriously limits women's autonomy. Instead of restricting abortion, banning sex selection, and sex determination, it is better to address the practice of sex selection by elevating the status of women and empowering women so that giving birth to a girl is a real and positive option, instead of a detriment to the parents and family as it is currently. But, if a ban on sex selective abortion or a ban on sex determination is indeed instituted, then wider social change promoting women's status in society should be instituted simultaneously.     

RESPECTING AUTONOMY WITHOUT DISCLOSING INFORMATION

There is widespread agreement that it would be both morally and legally wrong to treat a competent patient, or to carry out research with a competent participant, without the voluntary consent of that patient or research participant. Furthermore, in medical ethics it is generally taken that that consent must be informed. The most widely given reason for this has been that informed consent is needed to respect the patient's or research participant's autonomy. In this article I set out to challenge this claim by considering in detail each of the three most prominent ways in which ‘autonomy’ has been conceptualized in the medical ethics literature. I will argue that whilst these accounts support the claim that consent is needed if the treatment of competent patients, or research on competent individuals, is to respect their autonomy, they do not support the claim that informed consent is needed for this purpose.     

Company-sponsored egg freezing: an offer you can't refuse?

The aim of this article is to argue that one of the central arguments against company-sponsored non-medical egg freezing, namely that this practice is contrary to the reproductive autonomy of women, can be difficult to sustain under certain conditions. More specifically, we argue that company-sponsored egg freezing is not necessarily in conflict with the most common requirements for autonomous choice. That is, there is no reason to assume that employees cannot be adequately informed beforehand about what is scientifically known about the practice, and/or that they lack the required capacity to understand and process this information. Although they may feel a certain pressure to comply with the wishes of their employer, this concern can plausibly be alleviated through privacy regulations. In any event, such pressure is arguably not stronger than or relevantly different from other types of pressure on the labour market that most people readily accept as being ethically acceptable. Finally, we argue that company-sponsored non-medical egg freezing may mitigate certain types of oppressive socialization, although it may well perpetuate others, and should in any case arguably be dealt with through guidelines and counselling, which would ensure that women make autonomous choices when companies offer egg freezing.     

An Ethical Dilemma: A nurse is suspended: Commentary: Disciplinary processes should not be used to solve ethical problems

With the aim of promoting the informed choice of pregnant women, staff and pregnant women at two urban hospitals were offered leaflets summarising the best available evidence about the effectiveness of routine ultrasonography in early pregnancy. Ultrasonographers doubted the credibility of the evidence and were concerned that the leaflets would raise women''s anxiety, reduce uptake of scans, disrupt hospital organisation, and reinforce media messages about the poor safety record of ultrasonography. Midwives thought that the leaflets would inform women, help them to talk about their care with health professionals, and help them to get better care. Women were shocked at some of the contents but thought that it was appropriate to include both advantages and disadvantages of routine scanning in the leaflet. This case study highlights the resistance of some health professionals to evidence based health care; underlying conflicts with the principle of professional autonomy; concern that informed choice may create anxiety; and professional and organisational barriers to allowing informed choice.     

Educational pelvic exams on anesthetized women: Why consent matters

It is argued here that the practice of medical students performing pelvic exams on women who are under anesthetic and have not consented is immoral and indefensible. This argument begins by laying out the ethical justification for the practice of informed consent, which can be found in autonomy and basic rights. Foregoing the process of consent within medicine can result in violations of both autonomy and basic rights, as well as trust, forming the basis of the wrong of unauthorized pelvic examinations. Several objections to this argument are considered, all of which stem from the idea that this practice constitutes an exception to the general requirement of informed consent. These objections suggest that nonconsensual pelvic examinations on women under anesthetic are ethically acceptable on utilitarian grounds, in that they offer benefits either to the patient or to society, or on the grounds of triviality, in that consent is already presumed, or the practice is insignificant. Each of these objections is rejected and the practice is deemed indefensible.     

Practices of the Pregnant Self: Compliance With and Resistance To Prenatal Norms

A major challenge of medical anthropology is to assess howbiomedicine, as a vaguely-defined set of diverse texts,technologies, and practitioners, shapes the experience of selfand body. Through narrative analyses of in-depth, semi-structuredinterviews with 158 pregnant women in southern California, thispaper explores how the culture of biomedicine, encounteredformally at prenatal care check-ups and informally throughdiverse media, influences pregnant women's perceptions ofappropriate prenatal behavior. In the spirit of recent socialscientific work that draws on and challenges Foucauldian insightsto explore social relations in medicine, we posit a spectrum ofcompliance and resistance to biomedical norms upon whichindividual prenatal practices are assessed. We suggest thatpregnancy is, above all, characterized by a split subjectivity inwhich women straddle the authoritative and the subjugated, theobjective and the subjective, and the haptic as well as theoptic, in telling and often strategic ways. In so doing, weidentify the intersection between the disciplinary practices ofbiomedicine and the practices of pregnant women as a means offurnishing more fruitful insights into the oft-used term ``power'and its roles in constituting social relations in medicine.     

Prenatal screening for neural tube defects: Perceptions of potential recipients

Abstract

The interpretation of prenatal screening and follow‐up diagnostic testing for neural tube defects is relatively complex and presents unusual demands in terms of informed utilization by pregnant women. Such demands could impact differentially on individuals of different socioeconomic status or cultural values. Accordingly, a two‐part questionnaire, interrupted by presentation of educational material on neural tube defects and prenatal screening, was presented to female sophomore medical students and to reproductive‐age women whose children were served at Howard University Hospital. Student subjects favored prenatal testing, whereas clinic subjects were divided on testing both before and after reading the educational material. Both groups anticipated prenatal screening in future pregnancies, but clinic subjects were ambiguous about the need for diagnostic follow‐up after the determination of high maternal serum alpha‐fetoprotein. Clinic subjects were more hesitant than students to employ abortion as a means of intervention and did not distinguish between spina bifida and anencephaly in this regard.