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Despite widespread use over the past 20 years, prenatal diagnosis (PND) remains a controversial technique because of the moral and organizational dilemmas that it raises in many countries. In order to assess attitudes to PND within the Canadian medical profession, a survey was carried out involving over 3000 physicians offering PND (general practitioners, obstetricians, pediatricians, and radiologists). Several scales were developed to measure (1) physicians' willingness to broaden access to PND, (2) acceptability of abortion when a fetal anomaly is diagnosed, and (3) physicians' directiveness in regard to abortion. This article discusses results concerning the attitudes and opinions of male and female physicians toward prenatal diagnosis, which differed on the three scales. Female physicians are more liberal than their male colleagues with regard to access to amniocentesis and selective abortion and have a less directive relationship with their patients. These tendencies are similar to those observed in prior studies. They are particularly marked for general practitioners and radiologists. Various explanatory hypotheses are examined. Key words - prenatal diagnosis, physicians' attitudes, female physicians

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.

The acceptability of prenatal diagnosis (PND) of sickle cell anaemia (SCA) as a means of controlling sickle cell disorder in Nigeria was examined using a structured questionnaire. The respondents were comprised of 92 adult female patients with SCA, aged 15-20 (23 [+ or -] 6) years; 53 HbAS mothers, aged 20-61 (37 [+ or -] 11) years and 48 HbAS fathers, aged 33-65 (46 [+ or -] 8) years. More than 85% of the respondents would like PND to be offered in Nigeria and 92% of the HbAS mothers as well as 86% of the fathers would like to have the investigation or allow their wives to go through the procedure, respectively. Only 35% of the patients as compared to 63% of the mothers and 51% of the fathers would opt for termination of an affected pregnancy. Fear of the complications of abortion and religious convictions were the two most frequently cited reasons for opposing pregnancy termination. The high percentage of parents who would opt for termination of an affected pregnancy was associated with the societal emphasis on perfection and on previous experience in management of SCA patients. It is interesting that most of the respondents still favoured effective genetic counselling as the best means of controlling SCA.

Non-invasive prenatal testing (NIPT) is grounded in the analysis of free circulating fetal DNA (cfDNA) in pregnant women's blood. The rolling out of this screening method was in large part driven by commercial firms, which hoped to reach a huge potential market by offering a test that was expected to be risk-free, reliable, inexpensive, and able to detect a wide range of genetic traits of the future child. To date, most predictions about the scope and uses of NIPT have not materialized: in 2020 NIPT detects only a limited number of genetic anomalies, while results have to be confirmed by amniocentesis. NIPT has become a commercial success. Nevertheless the implementation of NIPT has tended to diverge across different national settings. In countries that already have state-sponsored screening for Down risk, NIPT has been offered by the state health insurance to women defined as "high risk", using a variant of the test that detects only three autosomal aneuploidies: trisomy 21, 13 and 18. These countries effectively regulate the supply of NIPT on grounds of cost-effectiveness and reliability. In countries without state-sponsored screening for Down risk, in contrast, multiple versions of NIPT covering a wider range of birth defects are commonly available on the free market, and purchased by women at low as well as high risk of having an affected child. Market-based healthcare systems tend to present women who can afford to pay for NIPT with a largely unregulated choice of technologies – though reimbursement rules imposed by private insurance providers may serve in effect to regulate use by those consumers who cannot afford to pay for tests from their own pockets. This regulatory divergence is shaped by the presence or absence of prior state-sponsored screening programs for Down risk. • Uses of non -invasive prenatal diagnosis were often shaped by commercial firms. • In spite of its limitations, non -invasive prenatal diagnosis is a marketing success. • There are important national differences in use of non-invasive prenatal diagnosis. • Stratified uses of non -invasive prenatal diagnosis produce situated fetal risks. [ABSTRACT FROM AUTHOR]

Significance Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological and developmental processes are altered. Methods This longitudinal phenomenological study of 16 mothers and 14 fathers/partners sought to learn the experiences and developmental needs of parents who continue their pregnancy despite the lethal diagnosis. The study was guided by Merleau-Ponty's philosophic view of embodiment. Interviews ( N = 90) were conducted with mothers and fathers over time, from mid-pregnancy until 2–3 months post birth. Data analysis was iterative, through a minimum of two cycles of coding, theme identification, within- and cross-case analysis, and the writing of results. Results Despite individual differences, parents were quite consistent in sharing that their overall goal was to “Have no regrets” when all was said and done. Five stages of pregnancy were identified: Pre-diagnosis, Learning Diagnosis, Living with Diagnosis, Birth & Death, and Post Death. Developmental tasks of pregnancy that emerged were 1) Navigating Relationships, 2) Comprehending Implication of the Condition, 3) Revising Goals of Pregnancy, 4) Making the Most of Time with Baby, 5) Preparing for Birth and Inevitable Death, 6) Advocating for Baby with Integrity, and 7) Adjusting to Life in Absence of Baby. Prognostic certainty was found to be highly influential in parents' progression through developmental tasks. Conclusion The framework of parents' pregnancy experiences with lethal fetal diagnosis that emerged can serve as a useful guide for providers who care for families, especially in perinatal palliative care. Providing patient-centered care that is matched to the stage and developmental tasks of these families may lead to improved care and greater parent satisfaction. [ABSTRACT FROM AUTHOR]

Abstract: Through narrative interviews with 20 pregnant ultra-orthodox [Haredi] Jewish women in Israel conducted between 2007 and 2009, we examine the implications for such women of prenatal testing, and of pregnancy as a gendered route of piety. We found that pregnancy signified both a divine mission and possible reproductive misfortunes. Bearing a child with a disability was taken as a test of faith and God’s decree was to be accepted. Fetal anomaly created anxiety about the women’s ability to fulfill their God-given task and about their position in an unwritten hierarchy of gendered righteousness. Challenging reproductive decisions were often assigned to rabbis, but this did not exempt women from viewing themselves as inadequate in their religious devotion. We conclude that prenatal testing becomes a spiritual ordeal that aggravates pregnancy tensions. [Copyright &y& Elsevier]

Routine use of prenatal diagnostic technologies (PDTs) such as ultrasound and amniocentesis result in the detection of a small percentage of fetal anomalies. For those women faced with the diagnosis of fetal disability, a decision must be made to continue or terminate the pregnancy. When the diagnosis is merely hypothetical, the discursive specter of post-diagnostic abortion is shaped by social and historical contexts in which interested discourses (regional, political, ethical, and religious) weigh in with varying degrees of authority and influence. However, when the diagnosis is actual, in this sample population of women, an estimated minimum of 90% opt to terminate their pregnancies. Data collected at two German hospitals—one in former East Germany, one in former West Germany—illuminate rates of PDT use and provide data with which to discuss the specter of post-diagnostic abortion in relation to mainstream medical discourses, Germany''s divided history, abortion politics, feminism, disability activism, and religion. These data demonstrate how reproductive discourses are shaped by ideological and historical contingencies, even when women''s ultimate reproductive decisions are not. [Copyright &y& Elsevier]

Abstract: 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. [Copyright &y& Elsevier]

Abstract: 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. [Copyright &y& Elsevier]

Abstract: Despite the aim of nuchal translucency screening to enhance reproductive choices among prospective parents, research on the experience of those who choose to decline this screening has been fairly limited. The objective of this study is to gain an understanding of how parents who decline screening account for their decision in a setting where screening for Down''s syndrome in early pregnancy is the norm. The majority of research on prenatal screening choices has been conducted retrospectively; there has been very little research that has explored decision making on a prospective basis and that has included both parents. In order to study this question, a purposive sample of ten couples who had decided to decline screening was recruited from four health care centres in Iceland. Data were gathered in semi-structured interviews conducted with each participant twice during the pregnancy (at 7–12 weeks pregnant and at 12–24 weeks pregnant), for a total of 40 interviews. We find that the decision to decline screening is largely determined by what prospective parents bring with them to the pregnancy, i.e., their personal philosophy of Down''s syndrome and the high value they place on maintaining the complexity of life. The test is also considered unreliable by some of the participants. These findings have implications for those who are involved in formulating and providing antenatal screening policies and practices. [Copyright &y& Elsevier]

Prenatal screening for Down's syndrome and other chromosomal anomalies has become common obstetrical practice. The purpose of this intervention is to provide women with the information needed to make informed reproductive choices. It is assumed that the ethical beliefs of parents play an important role in decision-making about whether to undergo testing, but little is known about their precise significance. More insight into how women conceptualize their choice of using prenatal screening tests may clarify the impact of personal ethical beliefs. With this aim, we conducted qualitative research consisting of semi-structured interviews with 59 women in the Netherlands who were offered a prenatal screening test. The analysis showed that the ethical views between acceptors and decliners showed similar diversity. In contrast with the currently accepted view, we conclude that ethical beliefs are one of the factors implicated in the decision. Women decide about prenatal testing by balancing the information provided by the test against the risks of further investigation, the emotional burden of a disabled child on their well-being and life perspective, as well as on those of family members. Normative moral principles are introduced once the choice is made, namely as factors in justifying and supporting the decision. [Copyright &y& Elsevier]

Explores the difficulties encountered by health practitioners about nondirectiveness within the context of antenatal screening and testing in Great Britain. Principles of nondirectiveness; Changes in the delivery of the organizational aspects of antenatal screening; Gap between choice and coercion.

Examines the involvement of costs, limitations and suffering in the prenatal screening for Down's syndrome. Aims of prenatal screening policies ; Interviews with adults with congenital conditions; Use of qualitative and quantitative methods for medical and social models.

Identifies the factors influencing imbalance in the sex distribution of children of the multiparous women attending an antenatal clinic in Hong Kong. Comparison of the expected and observed sex ratios on babies born to women with one previous live birth and women with two; Evidence on practice of sex selection or sex-selected abortion.

Extends a pilot study on measuring the benefits of antenatal screening by modeling the preferences of a larger sample of women, with the investigation of the consistency and validity of their responses. Elicitation of threshold probabilities of fetal loss; Use of standard gambles and Tobit estimation.

[beta]-thatassaemia is a recessively inherited blood disorder characterised by chronic anaemia. It requires monthly blood transfusions and regular iron chelation. Thousands of affected children are born annually and the, magnitude of the problem is most severe in developing countries, Ninety-nine children and 32 adults with thalassaemia major, and 112 parents of patients were interviewed in Antalya, south Turkey, using specifically designed questionnaires to evaluate psychosocial burden. The education of most of the thalassaemia children of school age (60%) was affected, mainly due to having to attend hospital for investigation and transfusions. A high level of parental anxiety (82%) was reported. Nearly half of the families (47%) had employment and financial problems as a result of thalassaemia, yet there was a low level of marital breakdown (1.8%). A substantial majority (93%) of the parental couples would have chosen to terminate an affected pregnancy if they had known that the foetus had thalassaemia major. The results reflect the need for a national policy for public education and screening of thalassaemia in Turkey in order to offer prenatal diagnosis for all families at risk of homozygous thalassaemia. Keywords: Turkey; [beta]-thalassaemia major; Psychosocial burden; Developing country; Prenatal diagnosis

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. Key words - choice, narrative construction, prenatal diagnosis

Thirty-four prenatal genetic counselors (all but one non-M.D.s) in seven American cities were interviewed on attitudes which might plausibly affect counselor-client interchanges. They overwhelmingly endorse both non-directive counseling and the pro-choice ethos which supports a woman's absolute right to abortion in the early stages of pregnancy. However, they also overwhelmingly condemn using prenatal diagnosis for sex selection purposes. Therefore, counselors experience continual stress from clients who evoke the conflict inherent between these two stances. Counselors use a variety of coping mechanisms to minimize this cognitive dissonance. Avoidance through out-referral or invoking institutional policies forbidding prenatal diagnosis for sex selection purposes is a diminishing option and not possible with clients who have or offer a medical indication. More common is the use of psychological coping mechanisms. By elevating the ideals of non-directiveness and female autonomy counselors better tolerate client values in conflict with their own. Some redefine the category of |unwanted pregnancy' to include fetuses of the |wrong sex'; others redefine the problem as their own ethnocentricism. Empowering counselors to set the protocols they use to screen applicants for prenatal diagnosis would not remove these conflicts. Many counselors believe a ban on releasing fetal sex information while abortion is still a legal option would be organizationally or legally unacceptable, or a violation of patient automony. A complicating factor is that 60% of the counselors interviewed would prefer to know fetal sex in their own pregnancies. Counselors reflect the ambivalence of American society in balancing conflicting social goals. Health professionals will continue to be stressed by sex selection clients until open discussion achieves societal consensus on this use of prenatal diagnosis.

Down's syndrome has been, and continues to be, a central focus of prenatal testing technology. However, there has been surprisingly little examination of how parental understandings of the condition relate to prenatal testing choices. This study, carded out at the University of Leeds, uses Q methodology to identify 'competing equivalent stories' of Down's syndrome and to highlight the shared and distinct themes within these stories. Seventy-six people were selected as being likely to represent a diverse range of views about Down's syndrome, approximately half of whom had some known experience or expertise related either to the condition or to prenatal testing. The participants were asked to Q sort 50 propositions about Down's syndrome that were selected to reflect different views about the condition in terms of its impact on the affected person, on families with an affected child, and on society. Using Principal Components Analysis, five statistically independent factors were extracted that reflected a range of views towards, and experiences of, people with Down's syndrome. Despite a virtual consensus about the rights of existing people with Down's syndrome to healthcare, an education, and inclusion in their community, there were significant differences in how participants believed they personally would adjust to an affected child. Furthermore, whether or not people with Down's syndrome were seen to be within 'a continuum of normality' sheds light on how views about the condition may be linked to views about prenatal testing and termination of pregnancy. The study demonstrates that people hold complex and sometimes seemingly contradictory views about Down's syndrome, and that these are likely to influence their prenatal testing decisions. Antenatal settings currently provide little opportunity for people to discuss and explore their beliefs about disability. It is argued that this may affect the ability of some individuals to make decisions that are informed by their own views and values. Keywords: Down's syndrome; Q methodology; Informed choice; UK

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 fin 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. Keywords: Antenatal screening; Antenatal diagnosis; Men; Parents; Fathers; Abortion, induced

What does it mean to investigate the fetus, and what might be the potential consequences? Although a number of feminists have engaged with the debate around the status of the fetus in terms of the possible implications for women, discussion of fetuses has been avoided by many feminists, in response to the politics around the abortion debate. However, there has recently been a move to explore the ways in which the meanings and significance of the fetus can be socially constructed. Set within a United Kingdom context, this paper focuses on two areas which are arguably changing perceptions of the fetus: the recent 'discovery' of fetal 'pain'; and the growing recognition of the fetus as a patient. One of the key concerns of those who support the autonomy of women is that any increasing discourse around the concept of fetal patienthood may promote the notion of fetal personhood, which in turn may affect the status of pregnant women. In exploring perceptions of the fetus, this article firstly cites some of the key policy documents and medical articles which were published during the 1990s, looking at apparent shifts in the ways in which the fetus is discussed in terms of pain and patienthood. It then explores how practitioners from different disciplines talked about fetal pain and patienthood in relation to the clinical setting. Although this paper does not provide conclusive evidence of a wholesale shift in terms of how the fetus is perceived by practitioners, it does point to subtle shifts occurring, which may or may not be significant. It is important to track such shifts closely, primarily because of the potential impact on women, but also for others involved, including practitioners. Such tracking needs to be set within specific cultural and policy contexts. Keywords: Fetus; Fetal pain; Fetal patient; Prenatal screening; UK

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. [ABSTRACT FROM AUTHOR]

The study examines the cost-effectiveness of screening pregnant women in Belgium for the presence of hepatitis B virus (HBV) and of vaccinating the newborns if necessary. The alternative strategy considered is 'doing nothing'. The rate of carriership among a sample of pregnant women in Belgium amounts to 0.67%. If a pregnant woman is a carrier of the virus, there is an average probability of 30% that she will transmit the virus to her newborn. Later in life, this baby will be at risk from serious complications, such as chronic active hepatitis, cirrhosis and primary hepatocellular cancer. However, medical costs wal periods. Our analysis revealed species-specific, ontogenetic, and environmentally induced variation in larval defensive and feeding behavior. The pattern of interspecific variation indicates that larval behavior could have subserved two processes in the evolution of prey specialization in the sister-species' progenitor: establishment on a specific prey and adaptation to the prey. First, the presence of the woolly alder aphid's secretions results in generalist larvae camouflaging themselves to a degree that rivals that of the specialist. Such phenotypic plasticity could have promoted the progenitor's initial adoption of the ant-tended woolly alder aphid as prey and its wool as a source of camouflaging material. Second, quantitative differences between the generalist's and specialist's behavior indicate that adaptation to the woolly alder aphid did not require the acquisition of novel behavioral traits in the larvae. It involved modifications in the expression of defensive behavior that existed in the generalist ancestor and alterations in the ability to attack and feed on robust prey.

Ultrasound screening is now a routine procedure which forms part of antenatal care provision. Within this routine context ultrasound technology has been found to be generally acceptable and indeed is positively demanded by many women. This paper raises the question whether the routine presentation of ultrasound implicitly conveys the message that its use in antenatal care is both valuable and safe. It examines women's views of ultrasound technology beyond a routine context. In a study designed to examine women's reactions to cerebral ultrasound on their normal term infants mothers were asked their views and knowledge of ultrasound and a comparison with their antenatal experience of ultrasound was elicited. A generalized concern about ultrasound techniques was found to underlie many of the women's comments. This raised questions concerning the current practice in the presentation of ultrasound to women attending for antenatal care.

The selective use of prenatal screening by Bedouin women attending Ministry of Health, maternal and child health clinics in Israel is examined. The data consist of a review of 537 prenatal care records, 16 in depth interviews with mothers, and four interviews with health personnel. These data are part of a larger study that took place between 1994-99 amongst Negev Bedouin women, part of the Palestinian Arab minority within Israel. The record review shows that the majority of women who attend prenatal care do not take up referrals for Maternal Serum Alpha Feto Protein (MSAFP) testing or for amniocentesis tests. Although many women interviewed talked about the value of prenatal screening, they also spoke of `false alarms' that may result from testing. Similarly, women were aware that the socially preferred pattern of consanguinity in marriage amongst the Bedouin may cause medical problems, however test uptake was unrelated to consanguinity. There was a variety of views concerning the permissibility of terminating a pregnancy. This study shows that women use prenatal screening selectively in a way that helps them to balance social and medical risk. Keywords: Bedouin; Israel; Negev; Pre-natal screening