Prenatal screening pathways, as nowadays offered in most Western countries consist of similar tests. First, a risk-assessment test for major aneuploides is offered to pregnant women. In case of an increased risk, invasive diagnostic tests, entailing a miscarriage risk, are offered. For decades, only conventional karyotyping was used for final diagnosis. Moreover, several foetal ultrasound scans are offered to detect major congenital anomalies, but the same scans also provide relevant information for optimal support of the pregnancy and the (...) delivery. Recent developments in prenatal screening include the application of microarrays that allow for identifying a much broader range of abnomalities than karyotyping, and non-invasive prenatal testing that enables reducing the number of invasive tests for aneuploidies considerably. In the future, broad NIPT may become possible and affordable. This article will briefly address the ethical issues raised by these technological developments. First, a safe NIPT may lead to routinisation and as such challenge the central issue of informed consent and the aim of prenatal screening: to offer opportunity for autonomous reproductive choice. Widening the scope of prenatal screening also raises the question to what extent ‘reproductive autonomy’ is meant to expand. Finally, if the same test is used for two different aims, namely detection of foetal anomalies and pregnancy-related problems, non-directive counselling can no longer be taken as a standard. Our broad outline of the ethical issues is meant as an introduction into the more detailed ethical discussions about prenatal screening in the other articles of this special issue. (shrink)

Prenatal screening pathways, as nowadays offered in most Western countries consist of similar tests. First, a risk‐assessment test for major aneuploides is offered to pregnant women. In case of an increased risk, invasive diagnostic tests, entailing a miscarriage risk, are offered. For decades, only conventional karyotyping was used for final diagnosis. Moreover, several foetal ultrasound scans are offered to detect major congenital anomalies, but the same scans also provide relevant information for optimal support of the pregnancy and the (...) delivery.Recent developments in prenatal screening include the application of microarrays that allow for identifying a much broader range of abnomalities than karyotyping, and non‐invasive prenatal testing (NIPT) that enables reducing the number of invasive tests for aneuploidies considerably. In the future, broad NIPT may become possible and affordable.This article will briefly address the ethical issues raised by these technological developments. First, a safe NIPT may lead to routinisation and as such challenge the central issue of informed consent and the aim of prenatal screening: to offer opportunity for autonomous reproductive choice. Widening the scope of prenatal screening also raises the question to what extent ‘reproductive autonomy’ is meant to expand. Finally, if the same test is used for two different aims, namely detection of foetal anomalies and pregnancy‐related problems, non‐directive counselling can no longer be taken as a standard. Our broad outline of the ethical issues is meant as an introduction into the more detailed ethical discussions about prenatal screening in the other articles of this special issue. (shrink)

This article reviews the literature on prenatal screening for Down’s syndrome. To be evidence based, medicine and nursing have to take account of research evidence and also of how this evidence is processed through the influence of prevailing social and moral attitudes. This review of the extensive literature examines how appropriate widely-held understandings of Down’s syndrome are, and asks whether or not practitioners and prospective parents have access to the full range of moral arguments and social evidence on (...) the matter. Highly valued ideals of justice, personal autonomy, parental choice, women’s control over their reproduction and of avoiding harm can all tend towards negative rather than neutral approaches to Down’s syndrome. This article considers how ethics and prenatal screening policies and practice that take greater account of social evidence of disability could use moral arguments that inform rather than determine the choices of people who use prenatal services. (shrink)

Although prenatal screening is routinely undertaken as part of a woman's antenatal care, the ethics surrounding it are complex. In this paper, the author examines the Jewish position on the permissibility of several tests, including those for Down's syndrome and Tay-Sachs disease, the latter being especially common in the Jewish community. Clearly, the status of the tests depends on whether termination of affected pregnancies is allowed, and contemporary rabbinical authorities are themselves in dispute as to the permissibility (...) of terminating affected pregnancies. The nature of these arguments is examined and the author concludes that there are grounds on which the full range of prenatal screening is permitted in Jewish law. (shrink)

Norway’s liberal abortion law allows for abortion on social indications, yet access to screening for fetal abnormalities is restricted. Norwegian regulation of, and public discourse about prenatal screening and diagnosis has been exceptional. In this study, we wanted to investigate whether the exceptional regulation is mirrored in public attitudes. An electronic questionnaire with 11 propositions about prenatal screening and diagnosis was completed by 1617 Norwegian adults (response rate 8.5%). A majority of respondents supports increased access (...) to prenatal screening with ultrasound (60%) and/or full genome sequencing of fetal DNA (55%) available for all pregnant women. Significant minorities indicate, however, that a public offer of prenatal screening for all pregnant women would signal that people with Down syndrome are unwanted (46%) or could be criticized for contributing to a ‘sorting society’ (48%). Results indicate deeper ambivalences and a cultural sensitivity to the ethical challenges of prenatal screening and subsequent abortions. The specific diagnosis of Down syndrome and the fear of becoming a ‘sorting society’ which sorts human life due to diagnoses, appear to play prominent roles in citizen deliberations. The low response rate means that a non-response bias cannot be excluded, yet reasons why results are still likely to be of value are discussed. (shrink)

The “expressivist objection” argues that prenatal screening leading to termination of embryos or fetuses with disabilities sends a harmful message to people with disabilities, such as the message that their lives are not worth living. I first argue that whether it sends such a message depends on how a reasonable person would see the motives behind the screening. I then argue that a reasonable person would see a harmful message, not when individuals terminate embryos, and not for (...) severe disabilities, but when the state allows the screening and termination of embryos with less severe conditions, such as Down syndrome. This sends the message that it is permissible not to pay a higher cost to support people with disabilities, when there is an abled alternative. This attitude is harmful to the welfare, rights and self-worth of people with disabilities because it reinforces the refusal to provide them with equal opportunity. The state therefore has a strong pro tanto reason to ban prenatal screening for less severe disabilities. (shrink)

This article presents a set of moral arguments regarding the selective abortion of fetuses on the basis of prenatal screening for late onset genetic diseases only, and for Huntington's Disease* in particular. After discussion of human suffering, human perfection and the distinctive features of the lives of people confronting late onset genetic disease, the author concludes that selective abortion is difficult to justify ethically, although it must remain a matter of personal choice.

New dimensions in different ethical scenarios following genetic information require new medical-ethical Action Guides for physician-patient interaction. This paper discusses the ambiguity in moral choice between a “right not to know” and “a duty to know”, regarding parental decisionmaking pro or contra selective abortion following prenatal screening for autosomal dominant polycystic kidney disease (Potter III) and related public policy issues.

International guidelines recommend that prenatal screening for fetal abnormalities should only be offered within a non-directive framework aimed at enabling women in making meaningful reproductive choices. Whilst this position is widely endorsed, developments in cell-free fetal DNA based Non-Invasive Prenatal Testing are now raising questions about its continued suitability for guiding screening policy and practice. This issue is most apparent within debates on the scope of the screening offer. Implied by the aim of enabling meaningful (...) reproductive choices is the idea that screening services should support women in accessing prenatal tests that best enable them to realize the types of reproductive choice that they find important. However, beyond whatever options meet the quality standards required for facilitating an informed decision, the remaining criteria of facilitating autonomous choice is strictly non-directive. As a result, policy makers receive little indication prior to consultation with each individual woman, about what conditions should be prioritized during the offer of screening. In this paper we try to address this issue by using the capabilities approach to further specify the non-directive aim of enabling meaningful reproductive choice. The resulting framework is then used to assess the relative importance of offering prenatal screening where concerning different types of genetic condition. We conclude that greater priority may be ascribed to offering prenatal screening for conditions that more significantly diminish a woman’s central capabilities. It follows that serious congenital and earlier-onset conditions are more likely to fulfill these criteria. (shrink)

Prenatal screening for foetal abnormalities such as Down's syndrome differs from other forms of population screening in that the usual aim of achieving health gains through treatment or prevention does not seem to apply. This type of screening leads to no other options but the choice between continuing or terminating the pregnancy and can only be morally justified if its aim is to provide meaningful options for reproductive choice to pregnant women and their partners. However, this (...) aim should not be understood as maximizing reproductive choice per se. Only if understood as allowing prospective parents to avoid suffering related to living with (a child with) serious disorders and handicaps can prenatal screening be a publicly or collectively funded programme. The alternative of moving prenatal testing outside the healthcare system into the private sector is problematic, as it makes these tests accessible only to those who can afford to pay for it. New developments in prenatal screening will have to be assessed in terms of whether and to what extent they either contribute to or undermine the stated aim of providing meaningful options for reproductive choice. In the light of this criterion, this article discusses the introduction of the new non‐invasive prenatal test (NIPT), the tendency to widen the scope of follow‐up testing, as well as the possible future scenarios of genome‐wide screening and ‘prenatal personalised medicine’. The article ends with recommendations for further debate, research and analysis. (shrink)

International guidelines recommend that prenatal screening for fetal abnormalities should only be offered within a non-directive framework aimed at enabling women in making meaningful reproductive choices. Whilst this position is widely endorsed, developments in cell-free fetal DNA based Non-Invasive Prenatal Testing are now raising questions about its continued suitability for guiding screening policy and practice. This issue is most apparent within debates on the scope of the screening offer. Implied by the aim of enabling meaningful (...) reproductive choices is the idea that screening services should support women in accessing prenatal tests that best enable them to realize the types of reproductive choice that they find important. However, beyond whatever options meet the quality standards required for facilitating an informed decision, the remaining criteria of facilitating autonomous choice is strictly non-directive. As a result, policy makers receive little indication prior to consultation with each individual woman, about what conditions should be prioritized during the offer of screening. In this paper we try to address this issue by using the capabilities approach to further specify the non-directive aim of enabling meaningful reproductive choice. The resulting framework is then used to assess the relative importance of offering prenatal screening where concerning different types of genetic condition. We conclude that greater priority may be ascribed to offering prenatal screening for conditions that more significantly diminish a woman’s central capabilities. It follows that serious congenital and earlier-onset conditions are more likely to fulfill these criteria. (shrink)

Prenatal screening for foetal abnormalities such as Down's syndrome differs from other forms of population screening in that the usual aim of achieving health gains through treatment or prevention does not seem to apply. This type of screening leads to no other options but the choice between continuing or terminating the pregnancy and can only be morally justified if its aim is to provide meaningful options for reproductive choice to pregnant women and their partners. However, this (...) aim should not be understood as maximizing reproductive choice per se. Only if understood as allowing prospective parents to avoid suffering related to living with serious disorders and handicaps can prenatal screening be a publicly or collectively funded programme. The alternative of moving prenatal testing outside the healthcare system into the private sector is problematic, as it makes these tests accessible only to those who can afford to pay for it. New developments in prenatal screening will have to be assessed in terms of whether and to what extent they either contribute to or undermine the stated aim of providing meaningful options for reproductive choice. In the light of this criterion, this article discusses the introduction of the new non-invasive prenatal test , the tendency to widen the scope of follow-up testing, as well as the possible future scenarios of genome-wide screening and ‘prenatal personalised medicine’. The article ends with recommendations for further debate, research and analysis. (shrink)

Recently, an agonizing twist intersecting predictive genetic tests and surrogacy contracts made news headlines in Canada. The intended parents, a couple from British Columbia, instructed the surrogate mother with whom they were working to undergo First Trimester Screening and Chorionic Villi Sampling, which revealed the fetus likely had Down syndrome. The parents directed the surrogate to terminate the fetus or they would abdicate their parental claim upon birth. This story raised numerous legal and ethical questions relating to the transferability (...) of decision making for prenatal screening, diagnostic tests, and the connected decision of termination when additional interested parties – the intended parents – are involved in the medical decision-making relationship. First, although the surrogate is the patient, what are the implications when the intended parents' wishes influence or even dictate the relationship between her and her obstetrician and genetic counselor? Second, if the intended parents' level of authority reaches explicit demands, may the intended parents ethically and legally require the surrogate to waive her right to informed consent for prenatal screening and diagnosis? (shrink)

The introduction of non-invasive prenatal testing in healthcare systems around the world offers an opportunity to reconsider funding policies for prenatal screening. In some countries with universal access healthcare systems, pregnant women and their partners are asked to pay for NIPT. In this paper, we discuss two important rationales for charging women for NIPT: to prevent increased uptake of NIPT and to promote informed choice. First, given the aim of prenatal screening, high or low uptake (...) rates are not intrinsically desirable or undesirable. Using funding policies to negatively affect uptake, however, is at odds with the aim of screening. Furthermore, copayment disproportionally affects those of lower socioeconomic status, which conflicts with justice requirements and impedes equal access to prenatal screening. Second, we argue that although payment models may influence pregnant women’s choice behaviours and perceptions of the relevance of NIPT, the copayment requirement does not necessarily lead to better-informed choices. On the contrary, external influences on women’s personal choices for or against prenatal screening should ideally be avoided. To improve informed decision-making, healthcare systems should instead invest in adequate non-directive, value-focused pretest counselling. This paper concludes that requiring copayments for NIPT in universal access healthcare systems fails to promote reproductive autonomy and is unfair. (shrink)

In contrast to most Western countries, routine offer of prenatal screening is considered problematic in the Netherlands. The main argument against offering it to every pregnant woman is that women would be brought into a moral dilemma when deciding whether to use screening or not. This paper explores whether the active offer of a prenatal screening test indeed confronts women with a moral dilemma. A qualitative study was developed, based on a randomised controlled trial that (...) aimed to assess the decision-making process of women when confronted with a test offer. A sample of 59 women was interviewed about the different factors balanced in decision-making. Participants felt themselves caught between a need for knowledge and their unwillingness to take on responsibility. Conflict was reported between wishes, preferences and ethical views regarding parenthood; however, women did not seem to be caught in a choice between two or more ethical principles. Participants balanced the interests of the family against that of the fetus in line with their values and their personal circumstances. Therefore, we conclude that they are not so much faced with an ethical dilemma as conflicting interests. We propose that caregivers should provide the opportunity for the woman to discuss her wishes and doubts to facilitate her decision. This approach would help women to assess the meaning of testing within their parental duties towards their unborn child and their current offspring. (shrink)

BackgroundPrevention of mother to child transmission of HIV remains a key public health priority in most developing countries. The provider Initiated Opt – Out Prenatal HIV Screening Approach, recommended by the World Health Organization lately has been adopted and translated into policy in most Sub – Saharan African countries. To better ascertain the ethical reasons for or against the use of this approach, we carried out a literature review of the ethics literature.MethodsPapers published in English and French (...) Languages between 1990 and 2015 from the following data bases were searched: Pubmed, Cochrane literature, Embase, Cinhal, Web of Science and Google Scholar. After screening from 302 identified relevant articles, 21 articles were retained for the critical review.DiscussionMost authors considered this approach ethically justifiable due to its potential benefits to the mother, foetus and society. The breaching of respect for autonomy was considered acceptable on the grounds of libertarian paternalism. Most authors considered the Opt - Out approach to be less stigmatizing than the Opt - In. The main arguments against the Opt - Out approach were: non respect of patient autonomy, informed consent becoming a meaningless concept and the HIV test becoming compulsory, risk of losing trust in health care providers, neglect of social and psychological implications of doing an HIV test, risk of aggravation of stigma if all tested patients are not properly cared for and neglect of sociocultural peculiarities.ConclusionsThe Opt – Out approach could be counterproductive in case gender sensitive issues within the various sociocultural representations are neglected, and actions to offer holistic care to all women who shall potentially test positive for HIV were not effectively ascertained. The Provider Initiated Opt – Out Prenatal HIV Screening option remains ethically acceptable, but deserves caution, active monitoring and evaluation within the translation of this approach into to practice. (shrink)

With the new and highly accurate noninvasive prenatal test, new options for screening become available. I contend that the current state of the art of NIPT is already in need of a thorough ethical investigation and that there are different points to consider before any chromosomal or subchromosomal condition is added to the screening panel of a publicly funded screening program. Moreover, the application of certain ethical principles makes the inclusion of some conditions unethical in a (...) privately funded scheme, even if such screening would enhance a woman’s reproductive autonomy. On the one hand, a screening program aimed solely at the detection of Down syndrome is subject to the technological imperative and should be reassessed in the light of technologies that allow for the detection of conditions that are at least as severe. On the other hand, some chromosomal conditions should not be included in any screening programs, because this would violate certain ethical principles, such as the right of the future child to genetic privacy. (shrink)

From an ethical point of view, there is an important distinction between two types of prenatal screening. The first of these targets maternal or foetal conditions (e.g., infectious diseases, blood group sensitization) where early detection allows for interventions that improve the chances of a healthy pregnancy outcome. The second screens for foetal conditions such as Down syndrome, where a timely diagnosis in most cases only allows for a choice between preparation for a child with special needs or termination (...) of the pregnancy. Whereas the former makes an easy fit with the prevention aim of most other population screening programmes, the latter does not. In order to steer clear from a possible eugenic reading of its aim, a wide international consensus has emerged for the view that prenatal screening of this type should have the atypical aim of helping women (couples) to make autonomous reproductive choices, rather than reducing the birth prevalence of the relevant disorders. However, keeping these types of prenatal screening apart may become increasingly difficult given the development of tests, such as the Non‐Invasive Prenatal Test, which cannot only be used for both types of screening but may also lead to interconnected findings on both sides of the divide. This makes it an urgent question: What the aim or aims of this new hybrid screening should be? As neither ‘prevention’ nor ‘autonomy’ will do, we argue for a normative framework that gives both aims their due, while recognizing the tensions between them. (shrink)

The implementation of new methods of treating and preventing disease raises many question of both technical and moral character. Currently, many studies focus on developing a screening test for preeclampsia (PE), a disease complicating 2–8% of pregnancies, potentially causing severe consequences for pregnant women and their fetuses. The purpose is to develop a test that can identify pregnancies at high risk for developing PE sufficiently early in pregnancy to allow for prophylaxis. However, the question of implementing a screening (...) test for PE does not only involve an evaluation of technical feasibility and clinical efficacy, it also requires an analysis of how the test influences the conditions and choices for those tested. This study evaluates state-of-the-art techniques for preeclampsia screening in an ethical framework, pointing out the central areas of moral relevance within the context of such screening activity. Furthermore, we propose ethical guidelines that a screening programme for PE should meet in order to become an uncontroversial addition to prenatal health care. (shrink)

Prenatal ultrasound use is skyrocketing despite limited evidence of improved outcomes. One factor driving this trend is the widely recognized psychological appeal of real-time fetal imaging. Meanwhile, considering imperfect safety evidence, U.S. professional guidelines dictate that prenatal ultrasound—a screening test—should be governed by expected clinical benefits—an opportunity for intervention. However, when women’s healthcare professionals themselves are pregnant, their access to ultrasound technology permits informal, personal use that may deviate from standard-of-care, e.g., for reassurance. Highlighting a poignant case (...) wherein a pregnant obstetrician’s personal ultrasound use had unforeseen negative consequences, we explore this issue within context of professional ethics and informal medical care. We discuss how women’s health professionals’ self-care may influence and inform prenatal care at large. We advocate curtailing informal prenatal ultrasound use, but also potentially broadening accepted indications for or relaxing proscriptions against ultrasounds for patients. Further research and updated, evidence-based, ethically-sound guidelines are needed. (shrink)

One widely held view of prenatal screening is that its foremost aim is, or should be, to enable reproductive choice; this is the Pure Choice view. The article critiques this position by comparing it with an alternative: Public Health Pluralism. It is argued that there are good reasons to prefer the latter, including the following. Public Health Pluralism does not, as is often supposed, render PNS more vulnerable to eugenics-objections. The Pure Choice view, if followed through to its (...) logical conclusions, may have unpalatable implications, such as extending choice well beyond health screening. Any sensible version of Public Health Pluralism will be capable of taking on board the moral seriousness of abortion and will advocate, where practicable, alternative means of reducing the prevalence of disease and disability. Public Health Pluralism is at least as well-equipped as the Pure Choice model to deal with autonomy and consent issues. (shrink)

A hallmark of good antenatal care is to respect prospective parent’s choices and provide information in a way that encourages their autonomy and informed decision making. In this paper, we analyse the meaning of autonomous and informed decision making from the theoretical perspective and attempt to show how those concepts are described among prospective parents in early pregnancy and in the public media in a society where NT screening is almost a norm. We use interviews with Icelandic prospective parents (...) in early pregnancy (N = 40) and material covering the discourse around prenatal screening in the media over 5 years period. Our analysis indicates that both prospective parents and the public media include ethical terms in their rhetoric around prenatal screening although those concepts differ in their expression. We conclude that the context in which these decisions are taken does not encourage moral reflection. Prospective parents describe that there is a lack of dialogue with professionals when decisions are made about screening. With routine offer of screening the conceptualization of bioethical concepts finds its own way through a mainstream discourse which has limited connections to the theoretical notions. This has been neglected in the implementation of screening, as limited effort has been subject to audit with reference to explore how the offer of screening and informed choice is experienced among prospective parents. (shrink)

Analysis and comparison of genetic screening programs shows that the extent of development of programs varies widely across Europe. Regional variations are due not only to genetic disease patterns but also reflect the novelty of genetic services. In most countries, the focus for genetic screening programs has been pregnant women and newborn children. Newborn children are screened only for disorders which are treatable. Prenatal screening when provided is for conditions for which termination may be offered. The (...) only population screening programs for adults are those for thalassaemia carrier status in Cyprus, Greece and Italy. Social responses to genetic screening range from acceptance to hostility. There is a fundamental tension between individual and communi ty in the debates in various European countries about implementation of screening programs. Opposition to genetic screening is frequently expressed in terms of arguments about "eugenics" with insufficient regard to the meaning of the term and its implications. Only a few countries have introduced explicit legislation on genetic screening. Legislation to address discrimination may provide more safeguards than legislation protecting genetic information itself. (shrink)

A statewide program in California to detect neural tube and other birth defects may revive enthusiasm for mass prenatal screening. Participation in the program is voluntary, but all expectant mothers are asked to sign a statement of “informed consent/refusal.” So far California's program seems to be working well, but questions for the future include the level of participation, the possibility that normal fetuses will be aborted, the kinds of information given to women, and the elusive nature of free (...) choice. (shrink)

Background: Noninvasive prenatal testing (NIPT) is a new prenatal screening technology that became commercially available in the United States in 2011. NIPT's increased accuracy and low false positive rate compared to previous screening methods enable many women to avoid invasive diagnostic testing and receive much desired reassurance. NIPT has received much attention for both its benefits and drawbacks. Methods: Observation of genetic counseling sessions and qualitative interviews with women offered NIPT at a large academic medical center (...) were conducted. Two ethnographic cases studies derived from the overall data set are used to illustrate the study findings. Results: Many fundamental ethical questions about prenatal screening, such as abortion or the value of disabled children, often do not emerge during clinical sessions, enabling most women to defer thinking about these issues until the future, when and if the need should arise. It may only be in the rare case when a woman receives a positive test result that she may be forced to confront ethical issues that she had up until then been able to avoid. Conclusions: Women want, and are grateful to have, access to NIPT, which offers much desired reassurance. This desire for reassurance may come at the expense of having contemplated the potential negative outcomes and limitations of testing. In the rare circumstance where women do not receive reassuring results, they may be unprepared and shocked by what NIPT can and cannot reveal. The routinization of NIPT as the latest and best available prenatal screening test does not necessarily create new ethical issues, but this study highlights ethical continuities following its arrival. However, the continued expansion of NIPT to include more conditions and women will increase the number of women who receive positive results, including false positives, and who may be shocked and unprepared as a result. (shrink)

The process of admittance to membership in a psychological organization is an opportune time to take into consideration any questionable behavior in the professional background of a prospective member. Membership application forms of the American Psychological Association (APA) and 58 affiliated organizations are reviewed to determine the kinds of questions that are asked about ethical misconduct. The nature of the inquiry differs considerably from one association to another, with a preponderance of organizations avoiding any direct questions about professional ethics. (...) Discussion is focused on how these different screening strategies impact on the applicant and the organization. There is a demonstrated need for appropriately formulated queries. A case is made for resolving current inconsistencies among associations by adhering to a unified procedure in the ethical screening of psychologist applicants. (shrink)

A new landscape of prenatal testing is presently developing, including new techniques for risk-reducing, non-invasive sampling of foetal DNA and drastically enhanced possibilities of what may be rapidly and precisely analysed, surrounded by a growing commercial genetic testing industry and a general trend of individualization in healthcare policies. This article applies a set of established ethical notions from past debates on PNT for analysing PNT screening-programmes in this new situation. While some basic challenges of PNT stay untouched, the (...) new development supports a radical individualization of how PNT screening is organized. This reformation is, at the same time, difficult to reconcile with responsible spending of resources in a publicly funded healthcare context. Thus, while the ethical imperative of individualization holds and applies to PNT, the new landscape of PNT provides reasons to start rolling back the type of mass-screening programmes currently established in many countries. Instead, more limited offers are suggested, based on considerations of severity of conditions and optimized to simultaneously serve reproductive autonomy and public health within an acceptable frame of priorities. The new landscape of PNT furthermore underscores the ethical importance of supporting and including people with disabilities. For the very same reason, no ban on what may be analysed using PNT in the new landscape should be applied, although private offers must, of course, conform to strict requirements of respecting reproductive autonomy and what that means in terms of counselling. (shrink)

Prenatal Diagnosis (PD) includes diagnostic procedures carried out during the antenatal period, together with Preconception Screening (PS) of prospective parents, and prenatal genetic diagnosis (PGD). The purpose of all these procedures is to provide prospective parents with opportunities to decide whether or not to have a child who will be diseased or disabled. Selection decisions determine what kinds of children are brought into existence; the ability to make these decisions is of huge ethical significance. It raises connected (...) questions about discrimination, the social status of disabled people and the medicalisation of disability; patient vulnerability and the power of the medical and counselling professions to influence decision-making; and the conceptualisation of selection as a public health measure and even as eugenic. In this paper, I outline the ethical issues raised by prenatal diagnosis and describe some of the arguments which have been elaborated in relation to the permissibility of selecting against (and occasionally for) diseases and disabilities. I conclude that there are no good arguments against the prevention of disability through PD but that providing adequate information for decision-making and facilitating uncoerced individual decisions requires further attention. (shrink)

In the USA, there are missed opportunities to diagnose hepatitis C virus (HCV) in pregnancy because screening is currently risk-stratified and thus primarily limited to individuals who disclose history of injection drug use or sexually transmitted infection risks. Over the past decade, the opioid epidemic has dramatically increased incidence of HCV and a feasible, well-tolerated cure was introduced. Considering these developments, recent evidence suggests universal HCV screening in pregnancy would be cost-effective and several professional organisations have called for (...) updated national policy. Historically, universal screening has been financially disincentivised on the healthcare system level, particularly since new diagnoses may generate an obligation to provide expensive treatments to a population largely reliant on public health resources. Here, we provide ethical arguments supporting universal HCV screening in pregnancy grounded in obligations to respect for persons, beneficence and justice. First, universal prenatal HCV screening respects pregnant women as persons by promoting their long-term health outside of pregnancy. Additionally, universal screening would optimise health outcomes within current treatment guidelines and may support research on treatment during pregnancy. Finally, universal screening would avoid potential harms of risk-stratifying pregnant women by highly stigmatised substance use and sexual behaviours. (shrink)

An enduring ethical dispute accompanies prenatal screening and testing (PST) technologies. This ethical debate focuses on notions of reproductive choice. On one side of the dispute are those who have supported PST as a way to empower women’s reproductive choice, while on the other side are those who argue that PST, particularly when made a routine part of prenatal care, limits deliberate choice. Empirical research does not resolve this ethical debate with evidence both of women for whom (...) PST enhances their choices but also persistent evidence of recurrent problems between PST and women’s autonomous decision-making. While there have been attempts to remove challenges to reproductive choice, it has been argued that these challenges cannot be removed entirely. In this paper I provide a historical review of PST technologies’ development and in doing so provide a detailed insight into the root causes of this tension between the opposing sides of this debate. This historical account provides evidence that those who championed the early use of these technologies did so in order to achieve a number of wholly different goals other than women’s choice and empowerment. These different aims focus on scientific discovery and eugenic goals and, I argue, areirreconcilablewith women’s choice and empowerment. It thus may not be surprising that the resulting practice of PST continues to resist compatibility with women’s choice and empowerment. Ultimately, by understanding the historical foundations of PST we can more effectively assess how toreconcilewomen’s reproductive autonomy with routine prenatal screening. (shrink)

Objective The study evaluated patient informed consent (IC) for the Quad screen and examined differences in IC between test acceptors and test refusers. A multidimensional model of IC was used. Methods Women seeking prenatal care at nine obstetrics clinics in a large Midwestern city completed surveys between February and December 2006. Surveys contained measures for three dimensions of IC: intention, understanding and controlling influence. Results 56.2% of women did not meet criteria for all three of our dimensions of IC (...) and therefore failed to give it. The failure rate was higher among women who choose to screen (72.6%) than women who choose not screen (50%) (p < 0.001). Women who met all criteria for IC were over three times less likley to choose to screen (or = 0.32, CI 0.17–0.62 ( p < 0.01)) than women who did not meet criteria for IC. Conclusion The decision to screen for fetal anomalies is less of a deliberated action than the decision not to screen. Women who lack a fundamental understanding of the purpose and nature of the screen may be operating on the belief that the screen is part of standard care and presents no need to deliberate. (shrink)

Screening of newborns for permanent congenital or early-onset hearing impairment has emerged as an essential component of neonatal care in developed countries, following favourable outcomes from early intervention in the critical period for optimal speech and language development. Progress towards a similar programme in developing countries, where most of the world’s children with hearing impairment reside, may be impeded by reservations about the available level of support services and the possible effect of the prevailing healthcare challenges. Ethical justification for (...) the systematic introduction of screening programmes for hearing in newborns based on the limitations in current primary prevention strategies, lack of credible alternative early-detection strategies and the incentives for capacity-building for the requisite support services is examined. (shrink)

Since the 1990s, glycated haemoglobin (HbA1C) has been the gold standard for monitoring glycaemic control in people diagnosed as having either type 1 diabetes mellitus (T1DM) or type 2 diabetes mellitus (T2DM). Discussions are underway about diagnosing diabetes mellitus on the basis of HbA1C titres and using HbA1C tests to screen for T2DM. These discussions have focused on the relative benefits for individual patients, with some attention directed towards reduced costs to healthcare systems and benefits to society. We argue that (...) there are strong ethical reasons for adopting HbA1C-based diagnosis and T2DM screening that have not yet been articulated. The rationale includes the differential impact of HbA1C-based diabetic testing on disadvantaged groups, and what we are beginning to learn about HbA1C vis-à-vis population health. Although it is arguable that screening must primarily benefit the individual, using HbA1C to diagnose and screen for T2DM may promote a more just distribution of health resources and lead to advances in investigating, monitoring and tackling the social determinants of health. (shrink)

In this paper I argue that the virtue ethics tradition can enhance the moral discourse on the ethics of prenatal genetic enhancements in distinctive and valuable ways. Virtue ethics prescribes we adopt a much more provisional stance on the issue of the moral permissibility of prenatal genetic enhancements. A stance that places great care on differentiating between the different stakes involved with developing different phenotypes in our children and the different possible means (environmental vs. genetic (...) manipulation) available to parents for pursuing legitimate concerns of parental love and virtue. Key components of the virtue ethics account of morality, such as the Aristotelian account of happiness, love and the doctrine of the mean, provide an adequate basis for rejecting the claim that it is morally impermissible for parents to pursue (safe and effective) prenatal enhancements. Furthermore, there is good reason to believe that a virtue ethics account of morality could actually support the stronger claim that utilising such interventions can (in certain contexts) be morally required. (shrink)

Expanded non-invasive prenatal testing (NIPT) has provoked ethical concerns about its justifiable scope. In this paper, we evaluate the role of the child’s right to an open future in setting the scope of NIPT. This ‘open future principle’ has been cited in arguments both limiting and expanding parental freedoms. This moral right holds that adult autonomy rights which children cannot yet exercise should nonetheless be protected until they can. Its purpose is to protect the future autonomy of the child (...) as a future adult. Several authors have extended this rationale from child to fetus. However, the right was not anticipated to apply to the fetus, a non-legal entity in many jurisdictions. The aim of this paper is to reconsider whether this principle is useful to help deliberate the scope of NIPT. We find that extending the open future principle to delineate the scope of NIPT is theoretically flawed. We contend that in the prenatal context its value primarily lies with counselling for prenatal screening where it can be used to encourage parents’ reflection on the implications of knowing for the sake of knowing on their future children and their relationship with them. (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)

Noninvasive prenatal testing promises to enhance women's reproductive autonomy by providing genetic information about the fetus, especially in the detection of genetic impairments like Down syndrome. In practice, however, NIPT provides opportunities for intensified manipulation and control over women's reproductive decisions. Applying Miranda Fricker's concept of epistemic injustice to prenatal screening, this article analyzes how medical professionals impair reproductive decision-making by perpetuating testimonial injustice. They do so by discrediting positive parental testimony about what it is like to (...) raise a child with DS. We argue that this testimonial injustice constitutes a twofold harm: people with DS and their family members who claim that parenting a child with DS may be a rewarding and joyous experience are harmed when they are systematically silenced, disbelieved, and/or denied epistemic credibility by medical professionals, and pregnant women are harmed since they might make poorly informed choices without access to all relevant information. The broader implication of the analysis is that epistemic justice is a precondition of reproductive autonomy. We conclude by calling for federal oversight of the acquisition and dissemination of information that prospective parents receive following a positive diagnosis of DS to ensure that it is comprehensive and up to date. (shrink)

Over the past decade, non-invasive prenatal testing (NIPT) has been adopted into routine obstetric care to screen for fetal sex, trisomies 21, 18 and 13, sex chromosome aneuploidies and fetal sex determination. It is predicted that the scope of NIPT will be expanded in the future, including screening for adult-onset conditions (AOCs). Some ethicists have proposed that using NIPT to detect severe autosomal AOCs that cannot be prevented or treated, such as Huntington’s disease, should only be offered to (...) prospective parents who intend to terminate a pregnancy in the case of a positive result. We refer to this as the ‘conditional access model’ (CAM) for NIPT. We argue against CAM for NIPT to screen for Huntington’s disease or any other AOC. Next, we present results from a study we conducted in Australia that explored NIPT users’ attitudes regarding CAM in the context of NIPT for AOCs. We found that, despite overall support for NIPT for AOCs, most participants were not in favour of CAM for both preventable and non-preventable AOCs. Our findings are discussed in relation to our initial theoretical ethical theory and with other comparable empirical studies. We conclude that an ‘unconditional access model’ (UAM), which provides unrestricted access to NIPT for AOCs, is a morally preferable alternative that avoids both CAM’s fundamental practical limitations and the limitations it places on parents’ reproductive autonomy. (shrink)

BackgroundThe introduction and wide application of non-invasive prenatal testing (NIPT) has triggered further evolution of routines in the practice of prenatal diagnosis. ‘Routinization’ of prenatal diagnosis however has been associated with hampered informed choice and eugenic attitudes or outcomes. It is viewed, at least in some countries, with great suspicion in both bioethics and public discourse. However, it is a heterogeneous phenomenon that needs to be scrutinized in the wider context of social practices of reproductive genetics. In (...) different countries with their different regulatory frameworks, different patterns of routines emerge that have different ethical implications.This paper discusses an ethics of routines informed by the perspectives of organizational sociology and psychology, where a routine is defined as a repetitive, recognizable pattern of interdependent organizational actions that is carried out by multiple performers. We favour a process approach that debunks the view – which gives way to most of the concerns – that routines are always blindly performed. If this is so, routines are therefore not necessarily incompatible with responsible decision-making. Free and informed decision-making can, as we argue, be a key criterion for the ethical evaluation of testing routines. If free and informed decision-making by each pregnant woman is the objective, routines in prenatal testing may not be ethically problematic, but rather are defensible and helpful. We compare recent experiences of NIPT routines in the context of prenatal screening programmes in Germany, Israel and the Netherlands. Notable variation can be observed between these three countries (i) in the levels of routinization around NIPT, (ii) in the scope of routinization, and (iii) in public attitudes toward routinized prenatal testing.ConclusionAn ethics of routines in the field of prenatal diagnostics should incorporate and work with the necessary distinctions between levels and forms of routines, in order to develop sound criteria for their evaluation. (shrink)

Prenatal care and the practice of prenatal genetic testing are about to be changed fundamentally. Due to several ground-breaking technological developments prenatal screening and diagnosis (PND) will soon be offered earlier in gestation, with less procedure-related risks and for a profoundly enlarged variety of targets. In this paper it is argued that the existing normative framework for prenatal screening and diagnosis cannot answer adequately to these new developments. In concentrating on issues of informed consent (...) and the reproductive autonomy of the pregnant women the ethical debate misses problems related to the clinical pathway as a whole and to implicit normative attributions to clinical actions or the function of health care professionals. If, however, ethical debate would focus on the clinical context and on the ends of PND to a larger extent, it would be able to provide a more comprehensive analysis of the ethical challenges especially of the new technologies in order to be more adequately prepared for their implementation. (shrink)

El diagnóstico prenatal como opción reproductiva más difundida a nivel mundial se refiere a métodos para investigar la salud del feto. Entre sus objetivos está la detección de malformaciones congénitas en la vida fetal y permitir la interrupción del embarazo. Un enfoque ético, basado en el respeto por las personas y a la confidencialidad, evitando el daño y respetando la autonomía, son las claves de un asesoramiento genético óptimo. Se realizó una revisión bibliográfica con el objetivo de exponer algunas (...) consideraciones éticas en la práctica asistencial de la genética médica, a partir de los principios fundamentales de la bioética vinculados al diagnóstico prenatal y al proceso de asesoramiento genético, ya que estos aspectos éticos en la práctica de la genética médica es una temática relativamente joven que ha estado influida por el desarrollo de la bioética y la solución de los dilemas éticos y sociales en la práctica médica. Prenatal diagnosis, as the world widest spread reproductive option, refers to fetus health research methods. Fetal life congenital malformation detection and allowing termination of pregnancy are among its main objectives. An ethical approach, based on respect for people and for confidentiality, avoiding hurt and respecting autonomy, is the key towards optimum genetic counseling. A bibliographic review was conducted. Its objective is to set out some ethical considerations in medical genetics health care practice starting from bioethics fundamental principles, which are linked to prenatal diagnosis and to the genetic counseling process; since dealing with issues related to these ethical aspects in medical genetics practice is a relatively new subject that has been influenced by the development of bioethics and the solution to ethical and social dilemmas in medical practice. (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)

Epidemiologists and geneticists claim that genetics has an increasing role to play in public health policies and programs in the future. Within this perspective, genetic testing and screening are instrumental in avoiding the birth of children with serious, costly or untreatable disorders. This paper discusses genetic testing and screening within the framework of eugenics in the health care context of India. Observations are based on literature review and empirical research using qualitative methods. I distinguish ‘private’ from ‘public’ eugenics. (...) I refer to the practice of prenatal diagnosis as an aspect of private eugenics, when the initiative to test comes from the pregnant woman herself. Public eugenics involves testing initiated by the state or medical profession through (more or less) obligatory testing programmes. To illustrate these concepts I discuss the management of thalassaemia, which I see as an example of private eugenics that is moving into the sphere of public eugenics. I then discuss the recently launched newborn screening programme as an example of public eugenics. I use Foucault’s concepts of power and governmentality to explore the thin line separating individual choice and overt or covert coercion, and between private and public eugenics. We can expect that the use of genetic testing technology will have serious and far-reaching implications for cultural perceptions regarding health and disease and women’s experience of pregnancy, besides creating new ethical dilemmas and new professional and parental responsibilities. Therefore, culturally sensitive health literacy programmes to empower the public and sensitise professionals need attention. (shrink)

ABSTRACTElder abuse is a serious and under-detected problem. Law reform agencies and legal profession regulatory authorities have called for action to ensure that lawyers meet their ethical obligations to older clients, including identifying and acting on risk factors for abuse. Screening tools to detect situations of elder abuse exist, but they are targeted mainly at health and social care practitioners. Drawing on international literature, this article identifies and discusses screening tools that could be adapted for use by legal (...) professionals. Three general categories of screening are relevant for lawyers who serve older clients: elder abuse screening tools that cover all domains of abuse or target specific behaviours, such as financial exploitation; screening for decision-making capacity, especially taking account of the impact of abuse or neglect on capacity; and screening to probe the suitability of a person to act in a formal decision-making role for an older person. The article emphas... (shrink)

The issue of prenatal testing and selective abortion has never received open public appraisal. This is somewhat regrettable. The interest in this area, however, is rapidly growing. In part this is a result of concerns about the rate of development in genetic knowledge and questions as to its application. For instance, there will be a huge increase in the scope of conditions or features for which we will be able to screen, some of which could hardly be described as (...) significant. Further, for some time now, people with disabilities have had concerns about the practice of prenatal testing and selective abortion. This article looks at the relationship between reproductive autonomy, prenatal testing and associated practices, and the interests of people with disabilities. It asks whether such practices negatively affect the interests of such individuals, and if so, how. This is an important question for the formulation of public policy in this area. Although some groups have studied this issue in detail, policy bodies do not necessarily fully engage with their analyses. This may be a reflection of public confusion about this issue. To some degree, fear of causing offense may also inhibit both expression of public opinion and, in turn, policy analysis. This is unfortunate and needs to be acknowledged. a. (shrink)

Public health aims to provide universal safety and progressive opportunities to populations to realise their highest level of health through prevention of disease, its progression or transmission. Screening asymptomatic individuals to detect early unapparent conditions is an important public health intervention strategy. It may be designed to be compulsory or voluntary depending on the epidemiological characteristics of the disease. Integrated screening, including for both syphilis and cancer of the cervix, is a core component of the national reproductive health (...) program in Kenya. Screening for syphilis is compulsory while it is voluntary for cervical cancer. Participants’ perspectives of either form of screening approach provide the necessary contextual information that clarifies mundane community concerns. (shrink)