ARTICLE IN PRESS

Social Science & Medicine 64 (2007) 22482259 www.elsevier.com/locate/socscimed

Fetal conditions and fatal decisions: Ethical dilemmas in ultrasound screening in Vietnam
nb Tine Gammeltofta,, Ha Nguye . nh Thi . Thuy
a

University of Copenhagen, Institute of Anthropology, Oster Farimagsgade 5E, 1353 Copenhagen K, Denmark b Hanoi Medical University, Hanoi, Vietnam Available online 2 April 2007

Abstract In the context of globalization, new technologies of pregnancy are spreading rapidly from afuent 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 congured. The data include observations in the scanning room, and semi-structured interviews with patients and staff at a major maternity hospital in the countrys 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 difculties of parenting a disabled child in Vietnam. We conclude that the ethical problems surrounding prenatal screening are intensied 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. r 2007 Elsevier Ltd. All rights reserved.
Keywords: Vietnam; Ultrasound scanning; Prenatal screening; Pregnancy; Ethics

Introduction: ethical issues in prenatal diagnosis Ultrasound imaging has been used in prenatal care since the late 1950s and has been a routine part of pregnancy care in many countries in the global North since the 1980s (e.g., Harris, Connor, Bisits, & Higginbotham, 2004; Taylor, 1998). Initially, obstetrical ultrasonography was used primarily for
Corresponding author. Tel.: +45 35 32 34 64;

fax: +45 35 32 34 65. E-mail addresses: tine.gammeltoft@anthro.ku.dk n). (T. Gammeltoft), n_thuyhanh@yahoo.com (H.T.T. Nguye 0277-9536/$ - see front matter r 2007 Elsevier Ltd. All rights reserved. doi:10.1016/j.socscimed.2007.02.015

obstetric purposes, such as establishment of gestational age, diagnosis of multiple pregnancies, and identication of placental localization. Recently, however, along with the development and renement of imaging technology, the diagnosis of fetal abnormalities has become a more central aim in many countries (Getz & Kirkengen, 2003). Until the early 1990s, only major structural fetal malformations could be detected through ultrasound scanning, but higher quality images and improved diagnostic capabilities have made it increasingly possible to also identify minor anomalies (Getz & Kirkengen, 2003; Williams et al., 2005). Since few

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conditions detected prenatally can be cured, the spectre of abortion looms large when prenatal diagnoses are made. This generates ethical questions, concerning when late-term abortions can be justied and who should decide whether or not to interrupt an affected pregnancy (e.g., Chervenak, McCullough, & Campbell, 1995; De Crespigny & Savulescu, 2002). In this context, the desire to distinguish current antenatal screening and testing from eugenics has contributed to making nondirectiveness and individual autonomy core ethical principles in Euro-American clinical practice (Clarke, 1997; Williams, Alderson, & Farsides, 2002). While still dominant in debates on the ethics of prenatal screening and testing, the ideal of nondirective counselling has, however, turned out to be difcult to apply in practice. Several studies conducted in the US and Europe have shown that it is not easy for practitioners to work nondirectively, even if they adhere to a doctrine of patient autonomy (e.g., Michie, Bron, Bobrow, & Marteau, 1997; Rapp, 1999; Williams et al., 2002). Moreover, structural directiveness may render the ideal of non-directiveness impossible to realize in practice: the mere availability of prenatal screening and testing tends to impose a burden of responsibility and a sense of obligation on pregnant women, and leads to a tendency for women to accept prenatal diagnosis and to selectively abort defective pregnancies (e.g., Clarke, 1997; Hallowell, 1999; Lippman, 1991). In this article, we seek to extend these reections to another terrain: that of low-income countries. Recent studies of the use of ultrasound scanning in countries such as Syria (Bashour, Hafez, & Abdulsalam, 2005), Brazil (Novaes, 2000), and Botswana (Tautz, Jahn, Molokomme, & Go rgen, 2000) have documented an increasing use of this technology in antenatal care. Yet despite the global proliferation of new technologies of pregnancy, the ethical questions that antenatal screening may give rise to in developing countries have largely remained outside the scope of academic inquiry, just as, more generally, very limited scholarly attention has been paid to the local implications of global ows of new reproductive technologies from afuent to lowincome countries (e.g., Gammeltoft, 2007, in press; Inhorn, 2002). This article presents results from research on the use of ultrasound scanning for detection of fetal anomalies in Vietnams capital, Hanoi. At the centre of the study are physicians who provide care for

pregnant women coming for ultrasound scanning at a major maternity hospital. We describe the information and counselling doctors offer women when a fetal anomaly is detected, and examine physicians views on choice, counselling, and the shaping of difcult personal and professional decisions. The research was conducted from an anthropological perspective, hence we have made no attempt to assess the clinical accuracy of diagnoses or the medical appropriateness of decisions made. Our aim is different: we explore the social context that shapes moral sentiments and ethical deliberations within everyday medical interactions, seeking to draw attention to the complex social processes through which ethical dilemmas are congured. Our analysis is informed by recent work in anthropology, which emphasizes that analyses of ethics in medical contexts must consider not only patientprovider interactions or local cultural values, but also the lifeworlds of patients and providers and the larger social and economic forces that structure such local worlds (e.g., Das, 1999; Farmer, 2005; Kleinman, 1995). Fetal ultrasound screening in Northern Vietnam In Vietnam, as in many other countries (e.g., Harris, et al., 2004; Lippman, 1991), the introduction of obstetrical ultrasound scanning has occurred in an ad hoc and haphazard fashion, driven by individual initiatives and professional fascination rather than by decisions rooted in health policy. In the 1970s and 1980s, obstetrical ultrasound scanning was used sporadically in Vietnam and only on indication. From the early 1990s the technology began to be more widely used, and over the past 5 years, ultrasound scans have become an integral part of pregnancy care in urban and peri-urban areas. Even though Vietnams Ministry of Health (2002) recommends ultrasound scanning only for pregnancies with complications, at the time of our research it was not uncommon for women in Hanoi to obtain 10 scans or more during each pregnancy n, in (Gammeltoft, in press; Gammeltoft & Nguye press). Not only two-dimensional (2D) scans, but also three-dimensional (3D) and four-dimensional (4D) scans are now offered in urban areas: 3D scans provide 3D images, which facilitate detection of certain fetal anomalies, while 4D scans add a time dimension, thereby producing a movie of the fetus. Scannings are provided through public as well as private health facilities at district, provincial, and

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central levels of care. During our research, the price for a 2D scan was 20,00030,000 Vietnamese Xo ` ng (1.32US$), for a 3D scan 80,000100,000 Xo ` ng, and for a 4D scan 200,000300,000 Xo ` ng. Most urban women considered 2D scans inexpensive, but for the rural poor, these prices were prohibitive. The rapid advance of ultrasound technology in Vietnam must be seen in the context of the ongoing privatization and commercialization of the healthhi ^ care system. Since the economic reform process o i (Renovation) was initiated in the mid-1980s, Mo the Government has signicantly reduced its nancial support for health-care services. To generate additional resources, comprehensive health sector reforms were implemented in 1989, including legalization of private medical practice, deregulation of the pharmaceutical sector, and an introduction of user fees. At present, personal payments are the most important source of health-care nancing in Vietnam. The underfunding of the health-care sector compels providers to mobilize additional funds through revenue-generating services, and there is therefore high risk that high-tech equipment, diagnostic tests, laboratory services, and pharmaceuticals will be over-used within the Vietnamese health-care system, especially since mechanisms of supervision and regulation of health-care provision are weak (United Nations, 2005). While ultrasound imaging was initially used mainly to enhance maternal and child health, at the time of our research attention among providers in Hanoi seemed to be shifting towards an increased emphasis on fetal diagnosis. Yet, except for occasional newspaper articles and internet discussions pondering the safety of this technology for mother and fetus, there has been no public debate on the use of the new diagnostic technologies or the late pregnancy terminations they may lead to. In general, even though Vietnam has one of the worlds highest abortion rates, induced abortion is shrouded in silence in public life (Gammeltoft, 2002). Within everyday worlds, however, pregnancy terminations remain culturally contested and fraught with moral ambiguity, as the fetus, even in the early stages of gestation, is perceived by many as a child-to-be and therefore worthy of moral recognition (Gammeltoft, 2002, 2006, forthcoming). Abortions are legal in Vietnam until 22 weeks gestation, and if a fetal malformation is found there is no upper limit for abortion, regardless of the character of the anomaly. Second-trimester terminations of pregnancy are performed at central and provincial public health

facilities. Abortions due to fetal malformations are nearly always done on the basis of ultrasound scanning only, as prenatal genetic examinations are currently used merely on an experimental and introductory basis in northern Vietnam. No national statistics exist of the number of fetal anomalies detected each year or the number of induced abortions due to fetal anomalies. Culturally, congenital malformations are highly sensitive issues, as birth defects are often interpreted through a karmic framework, which links bodily imperfection with personal or familial moral transgressions (cf. Gammeltoft, 2007). While the introduction and routinization of ultrasound scanning in Vietnam has been largely unregulated by national policies, the current use of new technologies for prenatal diagnosis does take place within a political climate that is strongly supportive of scientic and technological advances in prenatal care. In recent years, massive political and media attention has been paid to the long-term effects of chemical warfare in Vietnam during the second Indochina War, during which large segments of the population were exposed to the highly toxic herbicide dioxin Agent Orange. As Vietnamese researchers have found elevated incidences of birth defects in children born to war veterans, considerable concern is expressed in Government documents over the long-term consequences of the war for the health and quality of the population. The introduction of new technologies for prenatal diagnosis is envisioned by the Government as one among many means to enhance population quality, through a reduction of the number of children born with congenital malformations (National Committee for Population and Family Planning [NCPFP], 2001). In Government documents as well as in everyday lives, disability tends to be equated with suffering and misery, and the disabled are often nh na  ng) on families and portrayed as burdens (ga . n & Gammeltoft, 2006). Organizasociety (Nguye tions advocating for disability rights have only very recently started operating in Vietnam, and notions of rights, rehabilitation, and citizenship seem to have very limited impact beyond relatively small NGO circles in the countrys larger cities. The study: methodologies and data This article presents selected ndings from a larger research project investigating the processes through which obstetrical ultrasound scanning is

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being introduced and routinized in northern Vietnam. In this article we present results from the rst part of the study, which was carried out at a large obstetrical hospital in Hanoi from December 2003 to December 2004 by a research team of one Danish and eight Vietnamese researchers. The research was conducted with permission from Hanois Health Authorities and from Vietnam Commission for Population, Family and Children (VCPFC). The research permission from VCPFC included ethical approval. The hospital in which the research was conducted, a major public health facility, has offered 2D scannings since the early 1990s, and in 2003 a 3D scanning machine was purchased. During our research, a few scannings were conducted on indication, but the vast majority were routine, done either at the womans or at health providers request. If a fetal malformation was found and the pregnant woman applied for an abortion, the hospitals board of directors decided if it could be granted. During the period of our research, abortion requests were very rarely rejected. After pregnancy terminations, neither autopsies nor audits were performed. At the hospital, all women who were found through a 2D scanning to bear an anomalous fetus were referred for a 3D scan. From December 2003 to April 2004, we were therefore present in the 3D scanning room every day, conducting semi-structured interviews, observing patientprovider interactions, and talking casually with patients and doctors. The potential sample for our study consisted of all the women whose scans revealed a fetal anomaly. As these women were shocked, anxious, and deeply distressed, conducting research in this situation constituted an immense ethical challenge. When we explained the purposes of our research to the women and invited them to participate, they reacted in varying ways: some opted not to take part, while others seemed to use the research as an opportunity to share their thoughts and concerns. Even though we were often asked by women or their relatives to give advice on whether or not to keep an affected pregnancy, we felt it neither appropriate nor possible to provide such advice, but instead helped the women to contact relevant medical institutions. The women consented verbally to take part in the research after being informed that their participation was fully voluntary and that they could withdraw from the study at any time. Of 45 women contacted, nine declined to take part, four were excluded as their home was located more than 100 km from the hospital, and two were

excluded as the fetus had died in utero. Thirty women aged 2044 years were enrolled in the research. Twenty of the women lived in Hanoi, while 10 came from outlying rural areas. The women were 1438 weeks pregnant. According to the print-outs of the scanning results that each woman received after the scan, the fetal anomalies were: dilatation of ventricles/hydrocephalus (11), hydrops fetalis (4), abdominal/umbilical hernia (4), anencephaly (2), heart defect (2), abdominal anomalies (2), curved arms/legs (2), prune belly syndrome (1), cleft lip (1), and twins with a shared spine (1). Seventeen of the women had the pregnancy terminated, while 13 gave birth to the child. We conducted open-ended interviews on at least three occasions with each of these 30 women: immediately after the scanning, during the process of decision-making, and after abortion or birth. All interviews were conducted in Vietnamese, in collaboration between the Danish researcher and one of the Vietnamese team members. If the woman agreed to it, we complemented the interviews with participant observation, accompanying her through the various services she was offered at the hospital, such as counselling and information provision prior to abortion. A total of 20 counselling sessions were observed. Our ndings from interviews with pregnant women and their families have been published in , Nguye n, Vietnamese academic journals (e.g., o Nguye n, & Gammeltoft, 2005) or will be discussed in subsequent articles (e.g., Gammeltoft, 2007, in n, in press). This press; Gammeltoft and Nguye article is based mainly on our observations of daily work routines at the hospital and on our conversations and interviews with physicians. We conducted 14 semi-structured interviews with physicians (two radiologists and 12 obstetricians) working with ultrasound scanning and/or antenatal care at the hospital; seven interviews with senior doctors from other hospitals who had been involved in introducing ultrasound scanning in Vietnam; one focusgroup discussion with participation of eleven doctors; and two interviews with Ministry of Health ofcials. In addition to this, we had daily informal conversations with physicians about their work and the problems and challenges they encountered. Thrown into a world of action: observations of clinical practice On a grey morning in February 2004, the scanning room was slowly lling with women.

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While the doctor began performing the rst scanning, six or seven women were sitting on the blue plastic chairs along the wall, antenatal care records in hand, waiting for their turn while watching the doctor performing the scanning. One young woman looked strikingly different from the other women with their large bellies and quiet self-assurance. She was very thin, and there was an expression of nervousness and frailty on her face. Cha u told us that she was 17 weeks pregnant and had been referred here by her local hospital, as a scanning there had found that there was water in the childs head. While saying this, she started to cry. Then the nurse called her name. Cha u slipped off her slippers to lie down on the bed. The doctor put blue gel on Cha us abdomen and began the scanning while a younger doctor was observing. The atmosphere in the room was tense. The doctor rst examined the fetal head, and said to the younger doctor, Can you see, the third and fourth ventricle are not dilated, only the lateral ones. She continued talking quietly in medical terms to the younger doctor, then announced more loudly, The fetus develops too slowly: it is more than 17 weeks, but its size equals 14 weeks only. She turned on the 3D. On the screen, the fetus looked like a very small child, lying with its arms over its face. In the corner of the picture was a small foot. The structure of the brain is not very clear, the doctor said, it is difcult to see it properly. Cha u asked a question in a very low voice, but no one seemed to hear her. We heard the heartbeat of the fetus, it was clear and steady. Then the doctor asked her assistant to type the conclusion: Dilatation of lateral ventricles, intrauterine growth retardation, the brain is difcult to observe. Cha u looked quite expressionless. Then she asked in a small voice, Do I have to have an abortion? The doctor replied in a caring tone, You should go and ask the doctor in the antenatal care room. But personally I think you will have to have an abortion. Now, get up and go to the antenatal care room. Cha u still did not express any emotion, as if she did not really believe what she was hearing. Holding her antenatal care record in one hand and the printed ultrasound scanning result in the other, she left the room. Outside, she started to cry. The detection of a fetal anomaly placed pregnant women in an excruciating situation: a decision now had to be made regarding whether to terminate or maintain the pregnancy. As one woman remarked: This has pushed us into something very trouble-

some. If you do not have any examinations, then you simply have to accept your child as it is. But this has pushed us into a world of action. And until the day we die, we will feel tortured over this. For the women we talked to, being thrown into this world of action was a frightening experience. Many felt that the medical world of science and technology was completely beyond their comprehension, and that they were best off simply trusting what the experts told them (cf. Gammeltoft, 2007). After each of the ultrasound scanning sessions that we observed, the doctor doing the scanning referred the woman to the antenatal care rooms, informing her that the doctor there would read the scanning result for her. The atmosphere in the antenatal care rooms, however, was usually not conducive to any in-depth conversation. On most days the rooms were very crowded, with several antenatal examinations going on at the same time and half a dozen women waiting for their turns inside each room. Often, therefore, when the women we observed arrived to receive their counselling, just catching the attention of one of the doctors was a challenge. The explanations the women received tended to be very short, as the following examples illustrate:

When Cha u arrived at the antenatal care room, the doctor was very brief: The fetus suffers from cerebral palsy (ba o). What do you intend? . i na Cha u replied in a resolute tone, I will have an abortion. How come you decided so quickly? asked the doctor, Dont you need to ask your husbands opinion? I do not have to ask him, Cha u said, he knows already. Then you must go and have examinations. You can do it today or tomorrow. But rst, you should go home and talk to your husband and your family. Cha u left, crying silently. Chung was 21 weeks pregnant. The ultrasound scanning showed that the fetus possibly suffered at vi from abdominal hernia (tho . bu . ng). The doctor in the antenatal care room told Chung: Abdominal hernia can be operated after birth. It is not among the conditions we do abortions for. Chung asked, So it is not so serious? The doctor did not reply, but returned Chungs papers to her, indicating that the session was over. ^ Nguye . t was 26 weeks pregnant, the scanning so showed anencephaly (vo . ). The doctor said, Oh heavens, are you aware that your child is

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disabled? We will admit you to the hospital for an abortion. If you keep this one, it will only mean hardship for you and hardship for your child. I will prepare the papers for you to go into hospital, if you are not ready today, then tomorrow. Today, go home and talk to your ^ family. She lled out some papers, Nguye . t left without a word. To Tra m, the doctor said, The fetus has prune c), it is 19 weeks and 3 belly syndrome (bu . ng co days old. What do you intend? A younger doctor standing next to her exclaimed, The fetus has prune belly syndrome, why dont you just send her for examinations [i.e. to prepare for an abortion]. Tra m asked, What does prune belly syndrome mean? The doctor replied, It means the fetus is malformed, it cannot live. You are from V nh Phu c province, so in principle we do not take you here, but go and sign up to go into hospital. Now, next patient.

critical of the medical care provided. For instance, a 34-year-old economics teacher, whose fetus suffered from abdominal hernia, said: As a minimum, the doctor should explain what the reason is. If they cannot nd a reason, then there must be a way to explain so that people get at least a basic understanding of the problem. Then they should explain: what happens if you have the child, what happens if you have an abortion. And if you have the child, how should you take care of it. Or if you have the abortion, how should you take care of your own health afterwards. But patients do not receive any such information. The day I was at the hospital, nobody received any kind of explanation. I spent the entire day there, waiting, and in the evening I felt miserable, ripped to pieces. Psychologically it was very, very tough. It is painful enough just to be in this situation, and the hospital makes it even more painful. How then can we account for the limited support and information provided to patients in this medical setting? Why is it that doctors do not do more to ensure that their patients are provided with the information they need in order to make the hard choices confronting them? The next sections consider how such questions may be approached and conceptualized in ways that bring into analysis not only the ethical orientations of medical professionals, but also questions concerning the larger societal context within which practices of care are embedded. We start out by discussing ethical dilemmas as conceptualized by medical providers themselves. During our eldwork, doctors were often pondering the social processes through which decisions regarding affected pregnancies were -vis their reached, reecting on their own roles vis-a patients. In bioethical terms, their deliberations can be conceptualized as questions of autonomy versus benecence: is the doctors task primarily to support the woman in making her own choice, or is it to protect her interests by ensuring the outcome that the physician considers to be most benecial for her? Between autonomy and benecence: clinical dilemmas During our research at the maternity hospital, we engaged in numerous discussions with physicians about their modes of engaging with patients sometimes as an element in formally arranged

None of the women we observed got to talk in detail with a doctor about the condition of the fetus, options for treatment and prospects for the child if they chose to maintain the pregnancy, or abortion procedures if they opted to terminate. Research conducted in Euro-America has documented multiple dilemmas including miscommunication, interpretive differences, and generation of anxiety or false reassurance when pregnant women are counselled on whether to undergo prenatal testing and whether to maintain an affected pregnancy, (e.g., Browner, Preloran, Casado, Bass, & Walker, 2003; Green, 1994; Marteau, 1995; Mitchell, 2004; Rapp, 1999). The work of Rayna Rapp (1999) describes in particularly vivid detail the dilemmas of offering and communicating specic diagnoses for fetal abnormalities. In the medical setting in Vietnam where our research was conducted, such dilemmas seemed to be exacerbated. Most women in our sample left the health-care facility feeling uncertain about what was wrong with the fetus, and most of those who obtained late-term abortions did so on the basis of a very basic description of the anomaly. When we talked to the women later, nearly all expressed a desire for more information: about the causes of the malformation, about their chances of having a healthy child in the future, about when they could get pregnant again, about the impact of the abortion on their health, and so on. A few of the womenusually urban women with university level educationwere explicitly

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interviews, sometimes during the ow of daily work, when the predicaments of particular patients pushed physicians into explicit ethical deliberations. In correspondence with research conducted among health professionals involved in prenatal screening in Euro-American settings (e.g., Garel, GosmeSeguret, Kaminski, & Cuttini, 2002), we found health-care providers to be very preoccupied with moral questions and very concerned about how to ensure that new technologies are used in ways that truly benet pregnant women and their families. All the doctors we talked to were strong proponents of using obstetrical ultrasound scanning as a tool for improving antenatal care, but many also expressed n, in press). hesitations (Gammeltoft and Nguye Physicians would often, on their own initiative, talk at length about the seriousness of the choice that the scanning result confronted women with when a fetal malformation was detected. They described their uneasiness when witnessing the pregnant womans shock and sorrow, and their fears of contributing to a wrong choicean unnecessary abortion or the birth of a severely disabled child. Yet for most of the doctors we talked to, the most pertinent ethical issue was not how to ensure that the woman and her relatives were enabled to make an autonomous decision regarding the outcome of the pregnancy; rather, it was to ensure that they made the correct decision, that is, the decision that corresponded to the physicians evaluation of what would be best for the woman and her family in this situation. In most cases, except for conditions that could be surgically corrected with a high chance of success, doctors found termination of the pregnancy to be the correct decision for the woman and her relatives to make, regardless of the familys social or economic circumstances. This response on the part of providers must be seen in the context of their perceptions of the implications of disability for people in Vietnam. In the course of our eld research, we found nearly universal agreement among everyone we talked to, within as well as beyond health-care institutions, that the birth of a disabled child imposes immense burdens of cost and care on its family, and that the child itself is doomed to an unhappy and unfullled life. Many also mentioned that the birth of a child whose body deviates from socially shared standards of normality exposes its family to social stigmatization due to the cultural associations between birth defects and moral fault. Whereas research conducted in European settings (e.g., Garel et al., 2002;

Norup, 1998) has found that health professionals sometimes doubt the justication of post-diagnostic abortions or fear that such abortions may be associated with eugenic attitudes, we rarely encountered such hesitations in our research. With very few exceptions, all our informants seemed to share the opinion of this obstetrician, who explained: If a child is not healthy, its life will be difcult. For instance, if a girl has a cleft lip, her life will not be complete [as her marital chances are reduced]. So people think that it is better to terminate the pregnancy and have a more perfect child next time. Economically, few people are able to care for a disabled child. Especially in rural areas, where it is already difcult for people to make a living, it is very difcult for them to have to pay for medical care too. I have heard that in other countries, people sometimes adopt children with disabilities and nd happiness in that. But in Vietnam, people feel that an imperfect child is a burden on the family. If they get to know about the defect early on, they do all they can to avoid the birth of such a child. When asked directly, however, most physicians concurred that their task is not to make the decision regarding pregnancy outcome, but to enable the woman to decide for herself, in consultation with her relatives. As one obstetrician explained: If the patient does not want to have an abortion, she has the right to keep the pregnancy. The right to choose to have an abortion also belongs to the patient. As physicians, we only stand in the background and provide counselling on whether to opt for an abortion or not. The ultimate right is the patients. In other words, when answers were elicited through formal questioning, the principle of patient autonomy was strongly asserted, although doctors also recognized that patient autonomy, in a Vietnamese context, most often means that decisions are jointly made by women and their families (cf. Gammeltoft, 2007). This emphasis on autonomy must be seen in light of two main factors. First, over the past decade international NGOs have conducted comprehensive training in counselling skills for providers within obstetrical hospitals in Vietnam in order to enhance their ability to support women in making informed reproductive choices. Many physicians, therefore, were familiar with and adept in employing the rights language and aware that, internationally, non-directive counselling is considered the correct mode of engaging with patients.

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Second, providers tendency to emphasize their patients rights to make their own decisions must been seen in light of the limited societal support for children with disabilities. When discussing decisionmaking, all physicians pointed to the fact that if a disabled child is born, responsibility for care and treatment of the child will be placed mainly on the shoulders of parents. Ultimately therefore, physicians concurred, the right to decide whether to continue the pregnancy or not must rest with the parents and particularly with the mother, as mothers are usually the main caregivers of disabled children. While some physicians were explicitly advocating for womens rights to make their own decisions regarding the outcome of their pregnancies, others placed less emphasis on patient autonomy, especially when we discussed this in more informal conversations. This should be seen in light of the fact that non-directive counselling is a relatively new concept in Vietnam and hardly a habituated and integrated part of daily medical practice. As a female obstetrician observed: Doctors often do not consider counselling to be their duty and responsibility. Their responsibility is to treat the patient, to ensure that she goes home without any symptoms; they are not in the habit of talking to the patient about the future, for instance. They do not consider that to be their task. Many physicians also expressed doubts regarding their patients abilities to understand the problem at issue and hence to make appropriate decisions, claiming that their patients needed very explicit medical advice in order not to harm themselves. As a female obstetrician explained, Ideally, the doctor should give information, and the patient decide. But patients often need help to make their decision, and so doctors must t Xi decide for them [in order] to help them (quye .nh p giu ta). In informal conversations, doctors often talked at length about problems with poorly educated patients who did not understand the severity of the fetal problem and therefore insisted on keeping the pregnancy even if the malformation was very severe or fatal. As one doctor said, In some cases people do not want to terminate the pregnancy. Then we have to analyze the situation for them, encourage them, explain that this is not just about protecting the mothers health, but also about the quality of reproduction. It is very tough to bring up a disabled child. No matter who the parents are, even if they make

a living from sweeping the streets, they still want their child to be healthy and intelligent. Bringing up a child with a slow mind is much more painful than undergoing an abortion. Counselling is not easy, we have to explain to people so that they undergo abortion voluntarily. All physicians felt that the fetus, especially at later stages of gestation, certainly does have moral status, yet given the perceived hardships of living with disability in Vietnam, they felt that it is better for a child-to-be not to be born than to live with a severe congenital defect. As a senior obstetrician remarked: We have a large responsibility. We have to avoid mistakes, and we have to ensure that severely disabled children are not born, as their ng lives do not full what it means to be human (kho ng vo i ngh Xu a cu ha con ). To these physicians, the most pressing ethical problem seemed to consist of nding a method to convince sceptical patients of the necessity of terminating the pregnancy, thus hindering obstetrical complications or the birth of a severely disabled child whose life would only bring suffering for all involved. This then may partly account for the scanty information and support that doctors provided their patients in the observations described above: from the perspective of physicians, the core moral challenge was to ensure that the patient got the messagerather than ensuring that she was enabled to make her own choice. In sum, then, most providers in this medical setting seemed to feel that the obligation of physicians to protect their patients was ethically prior to enhancing patients capacities to make their own judgements. This resonates with claims made by scholars who argue that bioethics in Chinese cultures tends to be more benecence-oriented, as compared to the autonomy-oriented Western bioethics (e.g., Renzong, 1999). Yet there is more to the issue than this. In the next section we turn analytical attention beyond the clinical setting, in an effort to draw into analysis not only physicians and their patients, but also larger societal questions of resources and powerespecially the mechanisms of exclusion, inclusion or support for the disabled which structured womens abilities to maintain pregnancies which were medically graded as abnormal, while also shaping doctors responses to the predicaments of their patients and their assessments of what benecence might mean in concrete clinical encounters.

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Contextualizing clinical encounters: the social structuring of ethical dilemmas Since prenatal diagnostic technologies were rst employed, they have been accompanied by varying forms of ethical uncertaintyconcerning their safety, justication, and long-term effects (e.g., Juengst, 1998). A recent review of research conducted in Euro-America has established that fetal ultrasound screening often leads to clinical uncertainty and ensuing counselling dilemmas (Getz & Kirkengen, 2003; see also Rapp, 1999). This resonates with our eldwork experiences: during the course of our research, we were often struck by the uncertainty expressed by doctors, particularly concerning their ability to make a precise diagnosis of a fetal anomaly. When we related our observations in the antenatal care room and asked doctors why, in their opinion, more in-depth information was not provided to the patients, they often pointed to the limitations of their own knowledge of the fetal problem. As one 50-year-old female obstetrician said: From the scanning result we can tell if there is a malformation or not. If there is a malformation, there is no point in keeping the pregnancy. That is what I tell them, and then the decision is made to keep the fetus or not. But a more precise diagnosis, we cannot do that yet. Our diagnosis is: malformation or not malformation. We cannot say anything about the degree of disability, we can only diagnose positive or negative. Regretting doctors limited training in prenatal diagnosis, a 38-year-old male obstetrician remarked: First, doctors should know how to detect defects. When they know this, they should know what it is; classication. Thirdly, they should know if it is treatable or not. And nally, they should be able to give a prognosis for the child. For each malformation, the doctor should know all of this. But in reality, we only know about detection. At most, we know about detection. We do not know about the other elements. We can tell when we see something abnormal, such as an abnormal size of something, but we cannot say what this abnormality means. This is a big problem. It is well established that the interpretation of scanning images requires substantial provider skills (Harris, et al., 2004; Neilson, 1998), and that screening for fetal anomalies requires even higher degrees of education and expertise than other forms

of obstetrical ultrasound imaging (Levi, 1998). Doctors performing ultrasound scans at this maternity hospital had all received a training course in ultrasonography, yet this course focused mainly on the normal fetus while devoting very limited time and attention to the detection and diagnosis of fetal anomalies. After completion of the course there was limited supervision and assessment of how providers applied what they had learnt, and practice standards or guidelines were not available. In a situation where they could not make use of genetic testing, doctors therefore tended to rely mainly on their own and colleagues experience when interpreting a sonographic image. This rendered it difcult for them to provide a more detailed account of the fetal condition or a prognosis for the child in case the pregnancy was maintained. As a senior professor and obstetrician, one of the pioneers in the eld, explained: When the clinician relies only on the ultrasound scanning result, it is not enough, scientically there is a need for more. But in Vietnam we do not have the conditions to do this, so we have to simply rely on our experience. So, for instance, if the patient asks me if she should have an abortion or not, I can tell her to have an abortion. But if she asks what disease it is, I cannot reply. I can only say something very general, based on my experience. I can say for instance that this disease may be genetic, and the fetus is not normal. But if the patient asks me what kind of genetic disease it is, I cannot tell her. I do not know. Obviously, a consequence of this experiencebased medical practice was that doctors were often unable to provide the patient with in-depth information about the condition of the fetus, as they themselves did not possess this information. Most physicians involved in our research were acutely aware of the limitations of the care they were able to deliver. As one obstetrician said, We are not much different from the blind men trying to describe the elephant. Based on only ultrasound scanning, we cannot draw any conclusions. For that, we need to also add amniocentesis and other examinations. In other words, when interpreting and responding to a sonographic image, doctors drew not only on biomedical knowledge but also on generalized social knowledge of the difculties associated with parenting a disabled child in a resource-poor setting. In this context, principles of justice or ideals of shared,

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societal responsibilities for care of people with disabilities were hardly ever brought up. Rather than pondering the role of society in dening or responding to disability, doctors focused on the immediate problems they anticipated that the birth of a disabled child would entail for its parents. In this regard, the attitudes of these Vietnamese physicians seemed to differ from those of their French counterparts in the research conducted by Garel and her colleagues, who expressed concerns regarding the inability of our society to appropriately care for disabled children and the risk of eugenic pressures (Garel et al., 2002, p. 814). In sum, physicians in this Vietnamese medical setting felt that advancing medical technologies provided important opportunities for improving antenatal care, while also at times placing health professionals in demanding situations where a wrong decision could have fatal consequences. In such situations, many physicians felt, they had neither the advanced training, the appropriate equipment, nor the professional protocols that could support their practice in this novel and morally complex medical eld. Conclusion: the ethics of antenatal screening in lowincome settings This Vietnamese case illustrates that in order to comprehend the ethical problems at issue when fetal ultrasound screening is introduced in a developing country setting, analytical attention must be paid not only to moral ideals of autonomy or benecence as enacted within clinical interactions between patients and providers, but also to broader societal and health systems issues. Our research demonstrated a tendency among health-care providers to emphasize benecence over autonomybut it also demonstrated a variability in the viewpoints expressed that cautions us against essentializing cultural difference or drawing simplistic conclusions regarding any distinctly Vietnamese or Asian medical ethics. More important factors shaping the quality of care for pregnant women diagnosed with a fetal malformation were providers shared perceptions of the difculties of parenting a disabled child in Vietnam, in combination with the limited diagnostic capabilities that a scarcity of health-care systems resources entail: limited training in fetal medicine, limited supervision, lack of detailed professional protocols, and limited access to genetic testing. The Vietnamese case, in other words, points

to the multiple problems that may ensue when new reproductive health technology is applied in a situation where the acquisition of hardware is not accompanied by investment in upgrading of provider skills in diagnosis, treatment, and counselling and where health systems mechanisms to ensure standards and quality of care are not well developed. While uncertainties in relation to prenatal diagnosis have also been described in the literature from Western medical settings, in a low-income country such as in Vietnam, these problems tend to be intensied. The outcome, as documented through this research, was a situation where pregnant women received very limited information, support, and counselling when a fetal anomaly was detected through ultrasound scanning. This new technology therefore tended to foster feelings of uncertainty and insecurity; not only among the women whose pregnancies were found to be affected, but also among the providers responsible for medical support for such women. At issue, then, when ultrasound scanning for prenatal diagnosis is applied in this developing country setting, are not just differing cultural conceptions of autonomy and choice, but also larger questions of power and resources. Conceptualizing ethics as merely a question of value systems and culture risks concealing the more basic questions of how health systems and other societal resources are distributed and prioritized, thus diverting attention from the local and global justice questions that practices of prenatal screening engage.

Acknowledgements We are grateful to staff at the maternity hospital where this research was conducted for facilitating and supporting our work, to the senior obstetricans who generously contributed time and insights to our research, and to the pregnant women and their families who shared a difcult time of their lives n with us. We also thank our research team: Nguye hi Va ` n, Hoa ` ng Ha Huy Ba Thi Thanh Toa n, . o, o ` n Minh n Thi Tra , Bu ` i Kim Chi, and Nguye n Co ^ Hie ng Ngh a for . p. We are grateful to Nguye helping us translate Vietnamese medical terms into English. For helpful advice on earlier versions of this paper, we thank Finn Stener Jrgensen, Peter Fajans, Menaka Roy, Klaus Hyer, and Susan Reynolds Whyte. The research was generously funded by the Council of Development Research

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2258 n / Social Science & Medicine 64 (2007) 22482259 T. Gammeltoft, H.T.T. Nguye Getz, L., & Kirkengen, A. (2003). Ultrasound screening in pregnancy: Advancing technology, soft markers for fetal chromosomal aberrations, and unacknowledged ethical dilemmas. Social Science & Medicine, 56, 20452057. Green, J. M. (1994). Serum screening for Downs syndrome: Experiences of obstetricians in England and Wales. British Medical Journal, 309, 769772. Hallowell, N. (1999). Doing the right thing: Genetic risk and responsibility. Sociology of Health and Illness, 21(5), 597621. Harris, G., Connor, L., Bisits, A., & Higginbotham, N. (2004). Seeing the baby: Pleasures and dilemmas of ultrasound technologies for primiparous Australian women. Medical Anthropology Quarterly, 18(1), 2347. Inhorn, M. (2002). The local confronts the global: Infertile bodies and new reproductive technologies in Egypt. In M. C. Inhorn, & F. van Balen (Eds.), Infertility around the globe: New thinking on childlessness, gender, and reproductive technologies (pp. 263282). Berkeley: University of California Press. Juengst, E. T. (1998). Prenatal diagnosis and the ethics of uncertainty. In J. F. Monagle, & D. C. Thomasma (Eds.), Health care ethics: Critical issues for the 21st century (pp. 1528). Gaithersburg, MD: Aspen Publishers. Kleinman, A. (1995). Writing at the margin: Discourse between anthropology and medicine. Berkeley: University of California Press. Levi, S. (1998). Routine ultrasound screening of congenital anomalies. An overview of the European experience. In Levi, S., Chervenak, F. A. (Eds.), Ultrasound screening for fetal anomalies: Is it worth it? Annals of the New York Academy of Sciences, 847, 8698. Lippman, A. (1991). Prenatal genetic testing and screening: Constructing needs and reinforcing inequities. American Journal of Law and Medicine, XVII, Parts III (1936) and V (4449). Marteau, T. M. (1995). Towards informed decisions about prenatal testing: A review. Prenatal Diagnosis, 15, 12151226. Michie, S., Bron, F., Bobrow, M., & Marteau, M. (1997). Nondirectiveness in genetic counselling: An empirical study. American Journal of Human Genetics, 60, 4047. Ministry of Health (2002). National standards and guidelines for reproductive health care services. Hanoi. Mitchell, L. (2004). Womens experiences of unexpected ultrasound ndings. Journal of Midwifery and Womens Health, 49(3), 228234. National Committee for Population and Family Planning (2001). Vietnam population strategy 2001 2010. Hanoi: National Committee for Population and Family Planning. Neilson, J. P. (1998). Ultrasound for fetal assessment in early pregnancy. The Cochrane database of systematic reviews 1998, Issue 4. ^ ^ h a trh Nguye n, T. K. & Gammeltoft, T. (2006). Su e . n die . n cu . hie t ta ^ c khuye n ca truye n tho ng [Representa. t tre va n So ` Pha t tions of disabled children in the mass media]. Da ^n (Population and Development Review), 1, 2934. Trih e Norup, M. (1998). Attitudes towards abortion among physicians working at obstetrical and paediatric departments in Denmark. Prenatal Diagnosis, 18, 273280. Novaes, H. M. D. (2000). Social impacts of technological diffusion: Prenatal diagnosis and induced abortion in Brazil. Social Science & Medicine, 50, 4151.

of the Danish International Development Assistance (Danida)

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