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To situate the North American, and to some extent, European debate regarding disability rights and prenatal diagnosis in a social and cross-cultural context, this pilot study explored the views of leaders of organizations for disability rights and support groups for people with genetic conditions in Israel, where a similar debate has not emerged. Unlike many of their counterparts in North America, Israeli respondents were generally in favor of prenatal genetic testing as well as selective abortion, while at the same time expressing their commitment for already-born disabled individuals. The religious, legal, economic and socio-cultural context of this two-fold view of disability—which separates prenatal (preventive testing) and postnatal (supporting disability)—is discussed in order to further situate the debate in cross-cultural perspective. It is hypothesized that prenatal diagnosis and selective abortion are supported in secular Israeli society independently of the rabbinical stance, which forbids selective abortion, and in a way that reflects society's non-acceptance of congenital disability, veneration of the healthy body, and medical directiveness.

As part of a study of ethics and human genetics in 19 nations, we surveyed attitudes of 71 medical geneticists in 4 developing nations (Brazil, Greece, India and Turkey), and 611 geneticists in 15 developed nations, using anonymous questionnaires. Overall, 52% in India, 30% in Brazil, 29% in Greece, and 20% in Turkey would perform prenatal diagnosis to select a male fetus for a couple with 4 daughters and no sons. Sex selection is the major use of prenatal diagnosis in India. The majority in the U.S.A. (62%) and Hungary (60%) would also do sex selection or refer. We discuss possible means of preventing sex selection while avoiding medical paternalism and promoting the autonomy of women.

When evaluating new morally complex health technologies, policy decision-makers consider a broad range of different evaluations, which may include the technology's clinical effectiveness, cost effectiveness, and social or ethical implications. This type of holistic assessment is challenging, because each of these evaluations may be grounded in different and potentially contradictory assumptions about the technology's value. One such technology where evaluations conflict is Non-Invasive Prenatal Testing (NIPT). Cost-effectiveness evaluations of NIPT often assess NIPT's ability to deliver on goals (i.e preventing the birth of children with disabilities) that social and ethical analyses suggest it should not have. Thus, cost effectiveness analyses frequently contradict social and ethical assessments of NIPT's value. We use the case of NIPT to explore how economic evaluations using a capabilities approach may be able to capture a broader, more ethical view of the value of NIPT. The capabilities approach is an evaluative framework which bases wellbeing assessments on a person's abilities, rather than their expressed preferences. It is linked to extra-welfarist approaches in health economic assessment. Beginning with Nussbaum's capability framework, we conducted a directed qualitative content analysis of interview data collected in 2014 from 27 Canadian women with personal experience of NIPT. We found that eight of Nussbaum's ten capabilities related to options, states, or choices that women valued in the context of NIPT, and identified one new capability. Our findings suggest that women value NIPT for its ability to provide more and different choices in the prenatal care pathway, and that a capabilities approach can indeed capture the value of NIPT in a way that goes beyond measuring health outcomes of ambiguous social and ethical value. More broadly, the capabilities approach may serve to resolve contradictions between ethical and economic evaluations of health technologies, and contribute to extra-welfarist approaches in the assessment of morally complex health technologies.

Enthusiasm for so-called 'personalized' or 'precision' medicine has encouraged the growth of the molecular diagnostics industry and the proliferation of high-priced proprietary tests that can predict, diagnose or inform the treatment of diverse clinical conditions. Through a case study of non-invasive prenatal testing (NIPT), we explore how the mechanisms governing the development and dissemination of this novel prenatal screening test are most aptly understood as a 'regulatory regime.' We describe how private actors tied to the manufacturers of this test form a network of "experts" that contribute to the coordination of this regime by virtue of their efforts to navigate the governance of test adoption and also form spaces in which the standards governing test adoption are developed. We draw attention to private actors in this regime to demonstrate that they are a constitutive element of the public policy system governing biomedical innovation and adoption. Through this case study of NIPT we deepen our previous analysis of the role of consultants in navigating and shaping a regulatory regime (Holloway and Miller, 2020) and offer new insight about how scientists work with consultants to shape a regulatory regime that serves industry interests. Our work indicates that the private actors tied to the manufacturers of NIPT (experts employed by industry to court scientists and lobby payers, scientists collaborating with industry, key opinion leaders involved with clinical practice guidelines, lobbyists and consultants), constitute an 'invisible college' that navigates the governance of test adoption. The formations and negotiations over standards for NIPT identified in this paper comprise a new institutional norm: a polycentric regulatory regime permeated by commercial interests. The institutionalization of this regime has implications for accountability, transparency and test quality amidst a proliferation of new proprietary molecular tests.'

International audience; The first step in preventing mother-to-child HIV transmission (PMTCT) programmes is offering HIV counselling and testing to pregnant women. In developing countries where HIV testing remains rare, it represents a unique opportunity for many women to learn their HIV status. This prenatal HIV testing is not only the entry point to prevention of mother-to-child HIV transmission, but also an occasion for women to sensitize their male partner to sexual risks. Here we explore if these women, HIV-tested as mothers, apply the prevention recommendations they also receive as women. In the Ditrame Plus PMTCT program in Abidjan, Côte d'Ivoire, two cohorts of women (475 HIV-infected women and 400 HIV-negative women) were followed up two years after the pregnancy when they were offered prenatal HIV testing. In each cohort, we compared the proportion of women who communicated with their regular partner on sexual risks, prior to and after prenatal HIV testing. We analysed socio-demographic factors related to this communication. We measured two potential conjugal outcomes of women HIV testing: the level of condom use at sex resumption after delivery and the risk of union break-up. Prenatal HIV testing increased conjugal communication regarding sexual risks, whatever the woman's serostatus. This communication was less frequent for women in a polygamous union or not residing with their partner. Around 30% of women systematically used condoms at sex resumption. Among HIV infected ones, conjugal talk on sexual risks was related to improved condom use. After HIV testing, more HIV-infected women separated from their partners than HIV-uninfected women, despite very few negative reactions from the notified partners. In conclusion, offering prenatal HIV counselling and testing is an efficient tool for sensitizing women and their partners to HIV prevention. But sexual prevention in a conjugal context remains difficult and need to be specifically addressed.

In industrialised countries, certain biomedical innovations have come into general use, but the ways they are used vary considerably. Prenatal screening techniques for Down's syndrome are a perfect example of this. In 2010, screening rates stood at 61% in England and 84% in France; the previous year the rate was 26% in the Netherlands. The objective of our research, which took place in these three countries between 2008 and 2011, was to explain these differences. In these countries, public authorities focus on women's free access to innovations and on receiving their informed consent. But other aspects of screening policy vary, as do the health systems in which they are implemented. Our study shows that the sociotechnical settings which vary from country to country affected the interactions during the consultations we observed and thus impacted the decision of whether or not to screen.

Despite increasing research into men's experience of pregnancy and fatherhood, experiences of men whose partner is undergoing fetal screening and diagnosis have been less well-studied. This paper begins to fill a gap in the literature by identifying several potentially conflicting male roles in screening, diagnosis and subsequent decision-making. Drawing on a wider qualitative study in the UK of experiences of antenatal screening, it is suggested men may play inter-linked roles: as parents, bystanders, protectors/supporters, gatherers and guardians of fact, and deciders or enforcers. These may be roles they have chosen, or which are assigned to them intentionally or unintentionally by others (their female partner, health professionals). Men's status and feelings as fathers are sometimes overlooked or suppressed, or may conflict with their other roles, particularly when screening detects possible problems with the baby. The paper concludes by discussing these findings in the context of the wider literature on men and pregnancy.

Between the cultural story of prenatal diagnosis emphasizing the expansion of choice and the countercultural story emphasizing the lack of choice are the individual stories of choosing told by expectant and new parents after learning of the existence of a fetal impairment. The results of a qualitative, descriptive study involving 40 interviews with 15 women and 12 of their partners suggest that they had often 'backed into', as opposed to having actively chosen or refused, prenatal testing. After learning of their babies' impairments, they constructed subtly different accounts of pregnancies continued or terminated that located the moral agency for effecting these pregnancy outcomes either in themselves or elsewhere. These emplotments of choice can be summarized as nature's choice, disowned choice, choice lost, close choice and choice found. The findings raise questions concerning which of these or other constructions of choice in the aftermath of positive fetal diagnosis are the most effective in promoting psychological recovery and optimum parent-infant interactions.

Understanding the psychosocial impact of a congenital condition such as Down syndrome on affected individuals and their family requires an understanding of the cultural context in which they are situated. This study carried out in 2008 used Q-Methodology to characterize understandings of Down syndrome (DS) in Pakistan in a sample of health professionals, researchers and parents of children with the condition. Fifty statements originally developed for a UK study and translated into Urdu were Q-sorted by 60 participants. The use of factor analytic techniques identified three independent accounts and qualitative data collected during the Q-sorting exercise supported their interpretation. In two accounts, the 'will of God' was central to an understanding of the existence of people with DS although perceptions about the value and quality of life of the affected individual differed significantly between these accounts as did views about the impact on the family. The third account privileged a more 'scientific worldview' of DS as a genetic abnormality but also a belief that society can further contribute to disabling those affected. Attitudes towards prenatal testing and termination of pregnancy demonstrated that a belief in the will of Allah was not necessarily associated with a rejection of these technologies. Accounts reflect the religious, cultural and economic context of Pakistan and issues associated with raising a child with a learning disability in that country.

This article examines the dichotomies of collectivism and individualism in the debates on the selective abortion of disabled fetuses, which have occurred over the last four decades in Japan. Disagreements in debates on abortion in Japan have often revolved around the concept of self-determination (jiko-kettei). These debates usually focus on whether this 'foreign' concept is appropriate in a Japanese context, as the dominant Japanese discourse stereotypes the Japanese as making decisions in a harmonious manner. Both in public debates and in academic writing on abortion, the idea that the West is devoid of harmonious collectivism is often presented in an uncritical manner. In this article, we argue that the notion of 'self-determination' is borrowed from 'reverse Orientalist' and Occidentalist discourses that portray Westerners as individualistic or ego-centric and the Japanese as collectivist. The concept of 'self-determination' was remolded and projected onto Japanese public and academic debates on abortion. The relevance of this concept lies in the ways in which dichotomous views of 'Japan as harmonious' versus 'the West as individualistic' influence guidelines concerning prenatal testing and its daily practice. By critically analyzing the narratives of policy-makers and academic studies on self-determination and prenatal testing, this study traces these polarizing views back to the processes of national identity formation. These processes underlie political debates and academic work associated with the search for 'Japanese-ness'. This article further demonstrates that policy-makers' criticism of self-determination in prenatal testing derives from gender bias, which is also related to issues of Japanese identity. This article is based on both archival and field research materials collected between 1997 and 2008. We also refer to interviews with medical doctors, policy-makers, journalists, counselors, nurses, participants in various social movements and individuals undergoing prenatal testing, taken from a total of 180 interviews.

In a recent 37-nation survey of 2903 geneticists and genetic counselors, 29% would perform prenatal diagnosis (PND) for a couple with four girls who want a boy and would abort a female fetus. An additional 20% would offer a referral. The percentage who would perform PND in the United States (34%) was exceeded only by Israel (68%), Cuba (62%), Peru (39%), and Mexico (38%). In all, 47% had had requests for sex selection. There appears to be a trend toward honoring such requests since a similar survey in 1985. This paper discusses reasons for this trend and the ethical dilemmas of refusing patient requests in societies where individual autonomy is stressed.

This paper explores how rapid growth in the USA of mandatory newborn screening (NBS) leading to a diagnosis of cystic fibrosis is changing, for affected families, their experience of illness versus disease. Qualitative research comparing newborn screening and post-symptomatic diagnostic experiences suggests a number of potent consequences associated with affixing a disease diagnosis through newborn screening. The early, unsought diagnosis deeply affects parents' feeling of competence to care for their newborn and their sense of who the child is, and places the disease -- rather than the process of "falling in love with" the new baby -- at centre stage during the child's early weeks and months; and causes health professionals to loom very large in the family's life at this formative time. With newborn genetic screening continuing to expand rapidly in the USA for a range of other conditions that may not be immediately symptomatic, we can expect that the newborn period will be significantly altered in these ways for a growing segment of the population.

Down's Syndrome prenatal diagnostic and screening techniques have spread widely in France over the last 30 years and are now part of the routine clinical practice of prenatal care. These techniques, which originated in the field of genetics, ultrasonography and biochemistry, were the first to provide the possibility of choosing the features of the foetus, or at least to reject some of its characteristics. They lead to new norms of healthy foetuses and a progressive acceptance of medical abortions. The aim of this paper is to understand how the use of these tests has been generalised in France despite scientific controversies about their risks and ethical questioning about a potential renewal of eugenics. It analyses the representations of public needs that have been articulated by key players in the scientific and medical fields. This research explores political and administrative decision making processes to understand how progressively widening public access to prenatal testing has been organised and funded. The results highlight the scientific and political role of biomedical researchers, the forms of involvement of health authorities and politicians, and the passive participation of the vast majority of the users. The paper also examines the characteristics of the French health system that facilitated the generalised use of the technology.

This paper explores the meaning of higher risk status to women undergoing prenatal maternal screening for chromosomal anomalies. Quotations from lightly structured interviews and transcripts of pre-screening consultations in suburban London are used to illustrate pregnant women's diverse responses to the offer of screening, and to entering, living with and exiting from higher risk status. Some women reject screening in order to avoid the psychosocial and medical risks associated with higher risk status, or because they rule out pregnancy termination. They may question the risk selection implicitly built into the provision of preventative systems for some health problems but not others. Women who screen at higher risk may challenge this designation by questioning the system-specific probability used to separate them from the lower risk population. However, some experience distress even when they appreciate the precautionary basis on which their higher risk designation is based. They may find disengagement from higher risk status difficult after a diagnostic test has ruled out chromosomal anomalies. The findings highlight the complexity of communicating risk information to pregnant women and other screened populations, and emphasise the need to support those living with higher risk status and the benefits of keeping the time lived with this status as short as possible.

Partly in order to dissociate itself from eugenics, genetic counselling values the principle of nondirectiveness as a key feature. Recent reports have upheld the importance of this approach, treating it unproblematically. However, doubts have been expressed about whether nondirective counselling is possible or indeed, desirable. Changes in organisational aspects of antenatal screening delivery in the UK have meant that genetic counselling is now being carried out by a variety of practitioners other than counsellors and specialists. These are often practitioners such as obstetricians and midwives who, in many other aspects of their work do not practise in a nondirective way. This paper explores some of the difficulties health practitioners encountered when attempting to work nondirectively. Reasons given by practitioners for not following this approach fell into categories, which in turn formed a continuum. Categories along the continuum ranged from acting directively at the request of women, through to deciding for women, either covertly or overtly, in their “best interests”. It appears that for practitioners, the boundary between choice and coercion is not a clearcut one, and visualising it instead as a continuum may make it easier to see how slippage between choice and coercion can occur. The paper highlights the dilemmas which a variety of practitioners are dealing with in their daily work, in the hope of encouraging debate about these complex clinical and ethical issues.

With serum screening (MS-AFP and hCG testing for Down's syndrome) women have to make several decisions in a limited time: whether to participate in the screening in the first place; then, if increased risk for fetal abnormality is detected, whether to have a diagnostic test, and finally, what to do if fetal abnormality is detected. The aim of this study was to examine how women themselves in an unselected population describe their decision-making in the different phases of serum screening. Women receiving a positive result from serum screening in two Finnish towns from September 1993 to March 1994 and a group of individually matched controls were invited to semistructured interviews; 45 index and 46 control women (79% of those invited) participated between their 29th and 37th weeks of gestation (mean 31 weeks). Although serum screening was most often presented as voluntary or as an option, half the women described participation as a routine or self-evident act; only one-fourth of the women described actively deciding about participation. After a positive screening result, women's reactions to diagnostic tests, and their intentions if disability would be detected, varied greatly. Most of the women actively decided about having diagnostic tests, but for 23% participation in diagnostic testing was called a self-evident act. Women's intentions regarding abortion varied from a firm decision to abort to a firm decision not to abort, and many remained ambivalent. Prenatal screening, which demands the making of several decisions in a limited time and is offered to all pregnant women as part of established maternity care, is not based on every participant's active decision-making and thus creates an ethical problem. This problem should receive special attention from those who develop, introduce and decide on new health care practices.

In the context of globalization, new technologies of pregnancy are spreading rapidly from affluent to low-income countries. Yet, to date, there is very little research on the application of prenatal diagnostic technology in developing country settings or the dilemmas that prenatal screening may give rise to in situations where health-care resources are scarce. In this article, we describe how obstetrical ultrasound scanning is used as the most important technology for prenatal diagnosis in Vietnam. We explore the social context that shapes moral sentiments and ethical deliberations within everyday medical interactions, drawing attention to the complex social processes through which ethical dilemmas are configured. The data include observations in the scanning room, and semi-structured interviews with patients and staff at a major maternity hospital in the country's capital Hanoi. We found that pregnant women received very limited information and support when a fetal anomaly was detected by ultrasound. Most women left the hospital feeling uncertain about what was wrong with the fetus and decision-making about abortion centred around the difficulties of parenting a disabled child in Vietnam. We conclude that the ethical problems surrounding prenatal screening are intensified in low-income settings such as Vietnam and point to the need for research that takes into account the wider social context that structures ethical dilemmas.

This paper is an extension of previous work in which an alternative method of measuring the benefits of antenatal screening was proposed. The method is based on the elicitation of threshold probabilities of fetal loss at which women would be indifferent between having and not having an amniocentesis for the prenatal diagnosis of fetal abnormalities. The aim of this paper is to extend the previous work by modelling the preferences of a larger sample of women and investigating the consistency and validity of their responses. The threshold probabilities are elicited using standard gambles and modelled using Tobit estimation. The results indicate that it is possible to model these probabilities in this way and that it is possible to obtain a high degree of consistency in response to standard gamble questions. While establishing the validity of the responses is more difficult there is some evidence that the technique can provide valid responses.