in Ethics, Humanism, and Medicine, ed. Marc Basson (New York: Alan R. Liss, 1980), pp. 81-94.

Japan is among the few countries that have passed laws concerning eugenics. Consequently, the practice of selective abortion (abortion of an abnormal foetus) has been publicly debated for the past 35 years. Nevertheless, data show that knowledge in Japan about prenatal diagnosis is anything but common. In my fieldwork (April- June 2006) only 38% of interviewees (13/34) knew or had heard of 'amniocentesis' and 6% knew nothing about it at all. There are many explanations for why people are unaware (...) of prenatal diagnosis. The most crucial factor is that medical doctors do not talk to their patients about it. My interviews with 11 medical doctors revealed that they do not talk about it because they want to respect the principle of patient selfdetermination. In this paper I aim first to introduce and analyse, in the context of Japanese eugenic history and the contemporary notion of the patient-doctor relationship, medical doctors' explanations for not talking to their patients about amniocentesis. Second, I address whether the principle of 'non-intervention' equates to 'self-determination'. Lastly, I suggest possible improvements to the practice of 'self-determination' in Japan. (shrink)

Prenatal screening can significantly benefit parents and the community. However, it has created a dilemma for women as it requires them to quickly decide whether to continue a pregnancy or terminate it should the test indicate a foetal abnormality. This can be psychologically traumatic for women torn between their connection to an unborn child with all its possible imperfections, and a desire to prevent its suffering as a disabled child in later life. A woman must also consider her own and (...) her family's future welfare. Extensive research into the physical aspects of prenatal screening has not explored the meaning of the experience for women or whether termination is the most appropriate option. This article examines recent qualitative studies, concluding that women who terminate a pregnancy following prenatal screening may experience an acute grief reaction or be plagued by guilt and fear that can precipitate marital breakdown. Additionally, there is a risk that through striving to eradicate congenital disability, a community risks promoting a cult of perfectionism that may have discriminatory effects on disabled people. (shrink)

ABSTRACT Although a preference for sons is reportedly a universal phenomenon, in some Asian societies daughters are considered financial and cultural liabilities. Increasing availability of ultrasonography and amniocentesis has led to widespread gender screening and selective abortion of normal female foetuses in many countries, including India. Feminists have taken widely divergent positions on the morality of this practice. Feminists from India have strongly opposed it, considering it as a further disenfranchisement of females in their patriarchal society, and have agitated (...) successfully for legislative prohibitions. Libertarian feminists on the other hand, primarily from the United States, have argued that any prohibition of the use of this technology is a curtailment of a woman's reproductive choices and a violation of her right to make autonomous decisions regarding procreation. Using India as an illustrative case, this paper argues that in the context of what prevails in some societies, an ethical argument that hinges on the principle of autonomy as understood in the West can be problematic. Furthermore, a liberal theoretical assumption that it is always better to have more rather than fewer choices may not hold up well against the realities of life for such women. Although feminists have little disagreement concerning substantive matters, it is in the area of strategy that differences of opinion have arisen, their moral reasoning and responses shaped by the culture, ethnicity, class and race to which they belong. A view that a single ‘orthodox’ feminism of any variety can embody the aspiration of all women reverts to the problematic issues in the evolution of the rationalistic, individualistic, ‘male’ ethics against which women have consistently raised objections. (shrink)

In 2004, prenatal risk assessment (PRA) was implemented as a routine offer in Denmark, in order to give all pregnant women an informed choice about whether to undergo prenatal testing. PRA is a non-invasive intervention performed in the first trimester of pregnancy and measures the risk of a fetus having Down's syndrome or other chromosomal disorders. The risk figure provides the basis for action, i.e. the decision about whether or not to undergo invasive fetal testing via the maternal route ( (...) class='Hi'>amniocentesis or chorionic villus sampling), which, however, involves the risk of inducing a miscarriage. On the basis of ethnographic fieldwork in an ultrasound clinic in Denmark and interviews with pregnant women and their partners, this paper investigates how ideals such as autonomy and non-directiveness are practised in processes of decision-making. We view such ideals as forming social practice rather than neutral instruments to reach a certain goal. Focusing on one couple's trajectory through the clinical practices of PRA and the process through which a decision is reached, we call into question the assumption that more choice and more objective information is a source of empowerment and control. We make evident how decisions are made through a complicated process of meaning-making, which emerges through the relationship between professionals, the clinical setting and the social life of the couples. In the face of complex risk knowledge, PRA users are reluctant to make choices and seek to re-install authority in the health professionals. However, when assumptions about autonomy and self-determination are inscribed into the social practice of PRA, authority is transferred to the couple undergoing PRA and a new configuration of responsibility evolves between the couple and their relationship to the fetus. It is argued that PRA performs a form of government that works not through compulsion or persuasion but through choice. An ethic of a shared responsibility for PRA and its outcome between pregnant women and health professionals would be more in agreement with how decisions are actually made. (shrink)

In 1969, the field of human genetics was in its infancy. Amniocentesis was a new technique for prenatal diagnosis, and a newborn genetic screening program had been established in one state. There were also concerns about the potential hazards of genetic engineering. A research group at the Hastings Center and Paul Ramsey pioneered in the discussion of genetics and bioethics. Two principal techniques have emerged as being of enduring importance: human gene transfer research and genetic testing and screening. This (...) essay tracks the development and use of these techniques and considers the ethical issues that they raise. (shrink)

This paper examines women’s experiences with decision-making about non-invasive prenatal testing (NIPT). Such tests offer knowledge about chromosomal disorders early in pregnancy, without the risk of miscarriage associated with invasive procedures such as amniocentesis. Based on qualitative interviews with women in Germany who used, or declined, NIPT, we show how some women, who would not consider amniocentesis due to the risk of miscarriage, welcome the knowledge provided by, and the additional agency resulting from, NIPT. For others, declining the (...) offer to “know more” becomes increasingly difficult to articulate. The absence of risk strips women of a “good reason” to justify their decision not to test, thus implicitly challenging their “right not to know.” Moreover, NIPT heightens moral dilemmas within relationships with partners, existing children, and sometimes other close relatives. While clinically “non-invasive,” we argue that NIPT changes decision-making in an ethically and socially highly significant way. (shrink)

Conversing happily with my son we had been driving home when my mobile phone rang. Startled at the sound of my obstetrician's voice I had pulled off to the side of the road. At 18 weeks gestation I was told in a factual tone that the results from my serum screen had come back, indicating that our baby was at increased risk of Trisomy 18. Gripping the steering wheel my head had spun as he talked, explaining that Trisomy 18 was (...) worse than Trisomy 21 because our baby was not going to live. We had been thrilled when we heard the news of my pregnancy but now my temples throbbed and tears brimmed in my eyes. Suddenly my world was turned upside down and it had felt like someone reached into my chest and ripped my heart out.My husband and I decided that an amniocentesis was needed for a positive diagnosis and this was arranged for the following day. Studiously the sonographer performed the diagnostic ultrasound with a furrow across his brow. Watching the monitor I saw my baby moving as I watched the colours of red and blue flow through the heart and heard the regular, fast rhythm of the heartbeat. Quietly I hoped that the news was good but the creased brow had told me otherwise. Holding the amniotic fluid in his right hand the sonographer had glanced from it to me and empathetically informed me that the news wasn't good and that he didn't need to send the sample off for a positive diagnosis. Once again my world was crashing and all I wanted to do was bury my head in a pillow and sob. The following weekend dragged and had been filled with streams of tears and emotional turmoil. All I wanted to …. (shrink)

This article explores the reasons women of diverse class, racial ethnic, national, and religious backgrounds give for their decisions not to accept an amniocentesis or, having accepted one, not to pursue an abortion after diagnosis of serious fetal disability. The narratives of refusers reveal conflicts and tensions between the universalizing rationality of biomedical interventions into pregnancy and the wider heterogeneous social frame work to which women respond in their decision-making processes.

Medical science at its core aims to preserve health and eliminate disease, but a common theme in scientific discovery is the application of findings in ways that were not the primary intent. The development of diagnostic modalities to predict the health of resulting children has been a fundamental aim underpinning research into prenatal and preimplantation diagnostic modalities; however, the knowledge gained has in some cases been utilized for nonmedical purposes. As an example, amniocentesis developed to determine whether the pregnancy (...) is chromosomally normal also provides information about the sex of the fetus, which normally does not affect health. The emerging gene‐editing technologies that could be used to repair mutated disease‐causing genes in an embryo will presumably also be able to be used to alter traits unrelated to disease. And yet, I will argue, the desire to preserve the mystery of reproduction remains a central value in humans’ quest to reproduce. This yearning to maintain the mysteries will likely temper the development of strategies to alter our genome and affect the genetic identities of our offspring. In my experience as an obstetrician and reproductive endocrinology and infertility subspecialist, people want to have, not the best possible baby, but rather their own baby. (shrink)

Detection of genetic aberrations in prenatal samples, obtained through amniocentesis or chorion villus biopsy, is increasingly performed using chromosomal microarray, a technique that can uncover both aneuploidies and copy number variants throughout the genome. Despite the obvious benefits of CMA, the decision on implementing the technology is complicated by ethical issues concerning variant interpretation and reporting. In Belgium, uniform guidelines were composed and a shared database for prenatal CMA findings was established. This Belgian approach sparks discussion: it is evidence-based, (...) prevents inconsistencies and avoids parental anxiety, but can be considered paternalistic. Here, we reflect on the cultural and moral bases of the Belgian reporting system of prenatally detected variants. (shrink)

Despite the growing routinization of prenatal diagnosis, little research has examined men's roles in this reproductive arena or these technologies' possibilities for reinforcing or transforming gender roles and relations. The authors analyze male partners' participation in the amniocentesis decisions of Mexican-origin women at high risk for problems, drawing on interviews with 157 women and 120 of their male partners. The primary aim is to explore whether the normalization of prenatal testing poses a threat to women's autonomy in this decision (...) arena. The findings challenge critics of new reproductive and genetic technologies who assume that these technologies inherently represent male attempts to control women's bodies and the processes of reproduction. In contrast, the authors find many couples try to balance their desire to share equally in parenting responsibilities while maintaining the woman's ultimate control over her body and decisions associated with it. (shrink)

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

The issue of abortion has been the topic of heated and frequent debate in post-Communist Poland. Parliamentary debate in 1998—9 centred around a legislative attempt to restrict prenatal testing, specifically amniocentesis, in order to further reduce the numbers of abortions carried out, as it was argued to inevitably result in the termination of pregnancy. Medical professionals are rarely visible as subjects of and authorities on the abortion debate in the Polish context. However, in this debate around prenatal testing, the (...) medical community appear as key commentators and meaning-makers. This article asks the following questions: What role do the medical profession and biomedical knowledge play in the debate around prenatal testing, when abortion is highly politicized? Second, what social meanings and consequences are attributed to prenatal testing? How do these construct the relationship between foetus, pregnant woman and doctor, and what agency and 'rights' are attributed to women in the process of prenatal testing? (shrink)

This paper describes a new course in Medical Technology and Critical Decisions, part of the Technology Studies Program at Wellesley College, established with the support of the Alfred P. Sloan Foundation's New Liberal Arts Program. The course uses the dramatic new options in medicine presented by technology to individuals and society as a vehicle for promoting general technological literacy in liberal arts students. The course motivates the study of the scientific principles on which the technology rests and the mathematical principles (...) of a methodology for making rational choices. A case in point is the decision of a pregnant woman whether or not to undergo amniocentesis, a procedure used to determine the genetic make-up of a fetus from cells in the amniotic fluid. The course introduces students to the underlying notions of genetics; the physical principles behind the ultrasound imaging technique used to position the needle that draws the fluid; the probability and statistics needed to understand the risks to the woman and fetus both of having and of not having the procedure; and the methodology of decision analysis, increasingly used by genetic counselors to help prospective parents incorporate their personal values into the decision-making process. (shrink)

“Wrongful birth” is a controversial malpractice action, which has arisen in the past two decades, secondary to an expanding knowledge of human genetics and the constitutionally protected access to abortion. Under the wrongful birth claim, parents of a child with a congenital illness or abnormality may bring suit against a physician who allegedly failed to provide appropriate prenatal counseling or information. Typically, the parents claim that they were inadequately warned of a potential problem in their child, and that this paucity (...) of timely information prevented them from avoiding the pregnancy or from obtaining an abortion. While these cases have arisen in a variety of clinical circumstances, a characteristic example is the obstetrician who fails to offer amniocentesis to a woman of advanced maternal age who subsequently gives birth to a child with Down syndrome. Since the parents were prevented from learning of the abnormality and therefore exercising the option to terminate the pregnancy, they may claim damages for themselves for the wrongful birth of the infant. (shrink)

“Wrongful birth” is a controversial malpractice action, which has arisen in the past two decades, secondary to an expanding knowledge of human genetics and the constitutionally protected access to abortion. Under the wrongful birth claim, parents of a child with a congenital illness or abnormality may bring suit against a physician who allegedly failed to provide appropriate prenatal counseling or information. Typically, the parents claim that they were inadequately warned of a potential problem in their child, and that this paucity (...) of timely information prevented them from avoiding the pregnancy or from obtaining an abortion. While these cases have arisen in a variety of clinical circumstances, a characteristic example is the obstetrician who fails to offer amniocentesis to a woman of advanced maternal age who subsequently gives birth to a child with Down syndrome. Since the parents were prevented from learning of the abnormality and therefore exercising the option to terminate the pregnancy, they may claim damages for themselves for the wrongful birth of the infant. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Genetic Testing and Genetic ScreeningPat Milmoe McCarrick (bio)In recent years there has been an enormous expansion in the knowledge that may be gleaned from the testing of an individual's genetic material to predict present or future disability or disease either for oneself or one's offspring. The Human Genome Project, which is currently mapping the entire human gene system, is identifying progressively more genetic sequencing information (see Scope Note 17, (...) The Human Genome Project). Information obtained from genetic testing raises ethical and legal questions about its uses by society. The ethical dilemmas were foreseen two decades ago by bioethicists who asked whether questionable applications could stop "legitimate pursuits" (IV, Gaylin 1972) and whether genetic disease might come to be viewed as "transmissible" in the sense of being contagious (IV, Veatch 1974).Not only has knowledge expanded, but the practice of genetic testing and screening has greatly increased as well. For example, in the case of testing for cystic fibrosis (CF), the U.S. Congress' Office of Technology Assessment (OTA) estimates that instances of screening jumped from 9310 tests in 1991 to 63,000 tests in 1992 (I, OTA [Cystic Fibrosis] 1992). In addition, the OTA estimates that within the next few years, the six million women who become pregnant each year routinely will be informed of available CF carrier tests (I, OTA [Cystic Fibrosis] 1992).Following the recent identification of a gene linked to breast cancer, Dr. Francis Sellers Collins, director of the National Center for Human Genome Research, said that "it is not inconceivable that every woman in America may want to be screened for this gene. The economic, ethical, and counseling issues will be very daunting." Dr. Collins opines that in the near future physical examinations for 18-year-olds will include DNA testing for diseases with genetic components and that physicians, in the interests of preventive medicine, will make risk-based recommendations for a healthy life-style (IV, Breo 1993). The U.S. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research predicted as early as 1983 that before the end of the century genetic screening and counseling would become major components of both public health and individual medical care (I, U.S. President's Commission 1983). [End Page 333]The OTA defines genetic testing as "the use of specific assays to determine the genetic status of individuals already suspected to be at high risk for a particular inherited condition. The terms genetic test, genetic assay, and genetic analysis are used interchangeably to mean the actual laboratory examination of samples." In contrast, genetic screening usually uses the same assays employed for genetic testing but is distinguished from genetic testing by its target population (I, OTA [Genetic Monitoring] 1990). The National Academy of Sciences (NAS) defines screening as the systematic search of populations for persons with latent, early, or asymptomatic disease (III, NAS 1975). Some of the literature annotated for this Scope Note appears to use the terms "testing" and "screening" interchangeably.Philip Boyle of the Hastings Center points out that the language used to describe genetic variation is important and asks what words should be used: "Defects, flaws, deleterious genes, disorders, or the more neutral conditions? Using words such as normal—and its corollary, abnormal—is likely to foster stigmatization and discrimination" (III, Genetic Grammar, Boyle 1992).Areas of focus in genetic testing include: prenatal diagnosis, newborn screening, carrier screening, forensic screening, and susceptibility screening.Prenatal diagnosis discerns whether a fetus is at risk for various identifiable genetic diseases or traits. Prenatal diagnosis is made using amniotic fluid, fetal cells, and fetal or maternal blood cells obtained during amniocentesis testing; alpha fetoprotein assays or chorionic villus sampling; or ultrasound tomography, which creates fetal images on a screen. Another method, known as fetoscopy, uses a camera on a needle inserted in the uterus to view the fetus. Since prenatal screening began in 1966 (I, U.S. President's Commission 1983), the number of metabolic defects and genetic disorders that can be diagnosed prenatally has expanded greatly. There is also discussion of requiring testing for parents who are participating in an in vitro fertilization program and are at genetic... (shrink)

In the past few years considerable attention has been given to a relatively new method of prenatal diagnosis known as chorionic villus sampling (CVS). Because CVS can be performed in the first trimester it is hailed by many as a significant advance over amniocentesis. What has not been as publicized, however, are the disadvantages of CVS and earlier prenatal diagnosis. The emotional costs of CVS in terms of the greater number of both spontaneous and selective abortions following CVS, the (...) use of CVS for sex selection and, because of the greater social acceptability of first trimester abortion, the possibility of increased pressure on women to undergo prenatal diagnosis by health insurance companies, medical professionals and government agencies, all need to be weighed against the advantages of early prenatal diagnosis. (shrink)

Deborah is a thirty-three-year-old who presented to labor and delivery at thirty-seven weeks gestation with complaints of contractions. Upon arrival, she explained that her fetus, Nathan, had been diagnosed with a “lethal” condition by her primary obstetrician. At twenty-two weeks gestation, an amniocentesis confirmed trisomy 13, a chromosomal abnormality leading to miscarriage or stillbirth in nearly one-half of affected pregnancies. During the admission process, Deborah voices the worry that due to Nathan's brain and heart structure, vaginal delivery could be (...) traumatic and cause him to suffer. Deborah wishes for him to have as painless and as dignified a death as possible; cesarean section, she feels, will achieve this. Yet with her history of three prior vaginal deliveries, normally progressing labor, and poor fetal prognosis that is unlikely to improve with cesarean delivery, there is no maternal or fetal indication for a cesarean section. Should the obstetrician proceed with a cesarean delivery despite knowing that it would expose the mother to surgical risks with little or no corresponding fetal or neonatal benefit? (shrink)

Background: Although maternal serum screening for Down’s syndrome has become routinely available in most obstetric clinics in many countries, few studies have addressed the reasons why women agree to undergo the MSS test.Objectives: The aims of this study were to describe the circumstances in which MSS was offered to pregnant women and their reasons for undertaking it.Methods: Participant observation and in depth interviews were used in this study; specifically, the experiences of women who had a positive result for MSS and (...) who then followed this up with amniocentesis were examined. The interviewees were twenty six mothers aged between 22 and 35 years. The interviews were audio taped and transcribed for analysis. The results were analysed by the constant comparative method.Results: This study identified the reasons on which pregnant women appeared to base their decisions when undergoing MSS. The reasons were first, the recognition that the procedure was a prenatal routine procedure; second, the need to avoid the risk of giving birth to a baby with Down’s syndrome, and third, a trust in modern technology and in the professional authorities.Conclusions: This study offers insights into the informed choice made by women with a positive MSS result. The reasons for undergoing MSS might help health professionals and policy makers to reflect on their practice and this may, in turn, improve the quality of prenatal care during MSS. (shrink)

The purpose of this book is to present some of the critical moral issues that confront contemporary society and to evaluate them in the light of ethical principles aiming to preserve and enhance the dignity of human life. The volume opens with a discussion of the nature and implications of conjugal love, the purpose of domestic society, and the role of sex in marriage, where the author relies heavily on Dietrich von Hildebrand "whose writings for half a century have given (...) us so many invaluable insights into these areas of knowledge". Marriage problems involving impotency, homosexuality, hermaphroditism, and transsexualism are considered and a lengthy section is devoted to the comparatively new field of genetic engineering. Here the author discusses the moral implications of such issues as the process of cloning, sperm and ovary banks, test-tube babies, amniocentesis, artificial insemination, genetic screening, and genetic therapy, each issue being treated with cautious reserve. Following a chapter on family planning, where natural and artificial means of birth control are analyzed, the author approaches the complex topic of abortion, which he sets against the background of the latest biological data and the 1973 U.S. Supreme Court’s decree legalizing abortion. (shrink)

This paper presents a procedure designed to aid physicians and patients in the process of making medical decisions, and illustrates its implementation to aid pregnant women, who decided to undergo prenatal diagnostic test choose a physician to administer it. The procedure is based on a medical decision-making model of Karni (J Risk Uncertain 39: 1–16, 2009). This model accommodates the possibility that the decision maker’s risk attitudes may vary with her state of health and incorporates other costs, such as pain (...) and inconvenience, associated with alternative treatments. The medical decision problem was chosen for its relative simplicity and the transparency it affords. (shrink)