Expanded universal carrier screening (EUCS) entails a population‐wide screening offer for multiple disease‐causing mutations simultaneously. Although there is much debate about the conditions under which EUCS can responsibly be introduced, there seems to be little discussion about its aim: providing carrier couples with options for autonomous reproductive choice. While this links in with current accounts of the aim of foetal anomaly screening, it is different from how the aim of ancestry‐based carrier screening has traditionally been understood: reducing the disease burden (...) in the population. The reasons why the aim of EUCS is presented in terms of ‘autonomy’ rather than ‘prevention’ have not been spelled out in the literature. This paper seeks to fill this gap by considering the morally relevant similarities and dissimilarities between foetal anomaly screening, ancestry‐based carrier screening and EUCS. When carrier screening is performed in the prenatal period, enhancing autonomy appears the most appropriate aim of EUCS, as the alternative of ‘prevention through selective abortion’ would urge women to terminate wanted pregnancies. However, when screening is conducted in the preconception period, carrier couples can avoid the birth of affected children by other means than selective abortion, for instance preimplantation genetic diagnosis. To the extent that this increased control over passing on a genetic disorder raises questions of parental responsibility, it seems necessary that the account of the aims of EUCS is wider than only in terms of enhancing reproductive autonomy. (shrink)

Expanded universal carrier screening (EUCS) entails a population‐wide screening offer for multiple disease‐causing mutations simultaneously. Although there is much debate about the conditions under which EUCS can responsibly be introduced, there seems to be little discussion about its aim: providing carrier couples with options for autonomous reproductive choice. While this links in with current accounts of the aim of foetal anomaly screening, it is different from how the aim of ancestry‐based carrier screening has traditionally been understood: reducing the disease burden (...) in the population. The reasons why the aim of EUCS is presented in terms of ‘autonomy’ rather than ‘prevention’ have not been spelled out in the literature. This paper seeks to fill this gap by considering the morally relevant similarities and dissimilarities between foetal anomaly screening, ancestry‐based carrier screening and EUCS. When carrier screening is performed in the prenatal period, enhancing autonomy appears the most appropriate aim of EUCS, as the alternative of ‘prevention through selective abortion’ would urge women to terminate wanted pregnancies. However, when screening is conducted in the preconception period, carrier couples can avoid the birth of affected children by other means than selective abortion, for instance preimplantation genetic diagnosis. To the extent that this increased control over passing on a genetic disorder raises questions of parental responsibility, it seems necessary that the account of the aims of EUCS is wider than only in terms of enhancing reproductive autonomy. (shrink)

In the debate surrounding the introduction of non-invasive prenatal testing in prenatal screening programmes, the concept of routinisation is often used to refer to concerns and potential negative consequences of the test. A literature analysis shows that routinisation has many different meanings, which can be distinguished in three major versions of the concept. Each of these versions comprises several inter-related fears and concerns regarding prenatal screening and particularly regarding NIPT in three areas: informed choice, freedom to choose and consequences for (...) people with a disability. Three of the strongest arguments raised under the flag of routinisation are assessed for their validity: the threat that NIPT poses to informed choice, the potential increase in uptake of first-trimester prenatal screening and its consequences for social pressure to participate in screening or terminate affected pregnancies, and the negative consequences for disabled people. These routinisation arguments lack empirical or normative ground. However, the results of this analysis do not imply that no attention should be paid to possible problems surrounding the introduction of NIPT. At least two problems remain and should be addressed: there should be an ongoing debate about the requirements of informed choice, particularly related to an expanded scope of prenatal screening. Also, reproductive autonomy can only be achieved when expecting parents’ options are variegated, real and valuable, so that they can continue to choose whether or not to screen or to terminate a pregnancy. (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)

As knowledge increases about the human genome,prenatal genetic testing will become cheaper,safer and more comprehensive. It is likelythat there will be a great deal of support formaking prenatal testing for a wide range ofgenetic disorders a routine part of antenatalcare. Such routine testing is necessarilycoercive in nature and does not involve thesame standard of consent as is required inother health care settings. This paper askswhether this level of coercion is ethicallyjustifiable in this case, or whether pregnantwomen have a right to (...) remain in ignorance ofthe genetic make-up of the fetus they arecarrying. While information gained by genetictesting may be useful for pregnant women whenmaking decisions about their pregnancy, it doesnot prevent harm to future children. It isargued that as this kind of testing providesinformation in the interests of the pregnantwomen and not in the interests of any futurechild, the same standards of consent that arenormally required for genetic testing should berequired in this instance. (shrink)

In this paper I look at various ways that interpersonal and social relations can be seen as required for autonomy. I then consider cases where those dynamics might play out or not in potentially paternalistic situations. In particular, I consider cases of especially vulnerable persons who are attempting to reconstruct a sense of practical identity required for their autonomy and need the potential paternalist’s aid in doing so. I then draw out the implications for standard liberal principles of paternalism, specifically (...) in clinical or therapeutic situations. The picture of potential paternalism that emerges here is much more of a dynamic, interpersonal scenario rather than a case of two separate individuals making decisions independent of each other. (shrink)

Public health ethics, like the field of public health it addresses, traditionally has focused more on practice and particular cases than on theory, with the result that some concepts, methods, and boundaries remain largely undefined. This paper attempts to provide a rough conceptual map of the terrain of public health ethics. We begin by briefly defining public health and identifying general features of the field that are particularly relevant for a discussion of public health ethics.Public health is primarily concerned with (...) the health of the entire population, rather than the health of individuals. Its features include an emphasis on the promotion of health and the prevention of disease and disability; the collection and use of epidemiological data, population surveillance, and other forms of empirical quantitative assessment; a recognition of the multidimensional nature of the determinants of health; and a focus on the complex interactions of many factors—biological, behavioral, social, and environmental—in developing effective interventions. (shrink)

An increase in autonomy and freedom is often considered one ofthe main arguments in favour of a broad use of genetic testing.Starting from Gerald Dworkin's reflections on autonomy and choicethis article examines some of the implications which accompanythe increase in choices offered by prenatal genetic diagnosis.Although personal autonomy and individual choice are importantaspects in the legitimation of prenatal genetic diagnosis, itseems clear that an increase in choice offered by prenatalgenetic diagnosis also leads to various implications that maynegatively influence the freedom (...) of the persons involved. (shrink)

It is hypothesised and argued that “the four principles of medical ethics” can explain and justify, alone or in combination, all the substantive and universalisable claims of medical ethics and probably of ethics more generally. A request is renewed for falsification of this hypothesis showing reason to reject any one of the principles or to require any additional principle(s) that can’t be explained by one or some combination of the four principles. This approach is argued to be compatible with a (...) wide variety of moral theories that are often themselves mutually incompatible. It affords a way forward in the context of intercultural ethics, that treads the delicate path between moral relativism and moral imperialism. Reasons are given for regarding the principle of respect for autonomy as “first among equals”, not least because it is a necessary component of aspects of the other three. A plea is made for bioethicists to celebrate the approach as a basis for global moral ecumenism rather than mistakenly perceiving and denigrating it as an attempt at global moral imperialism. (shrink)

The power of new medical technologies, the cultural authority of physicians, and the gendered power dynamics of many patient-physician relationships can all inhibit women's reproductive freedom. Often these factors interfere with women's ability to trust themselves to choose and act in ways that are consistent with their own goals and values. In this book Carolyn McLeod introduces to the reproductive ethics literature the idea that in reproductive health care women's self-trust can be undermined in ways that threaten their autonomy. Understanding (...) the importance of self-trust for autonomy, McLeod argues, is crucial to understanding the limits on women's reproductive freedom. -/- McLeod brings feminist insights in philosophical moral psychology to reproductive ethics, and to health-care ethics more broadly. She identifies the social environments in which self-trust is formed and encouraged. She also shows how women's experiences of reproductive health care can enrich our understanding of self-trust and autonomy as philosophical concepts. The book's theoretical components are grounded in women's concrete experiences. The cases discussed, which involve miscarriage, infertility treatment, and prenatal diagnosis, show that what many women feel toward themselves in reproductive contexts is analogous to what we feel toward others when we trust or distrust them. -/- McLeod also discusses what health-care providers can do to minimize the barriers to women's self-trust in reproductive health care, and why they have a duty to do so as part of their larger duty to respect patient autonomy. (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)

Bioethical work on solidarity has yielded an array of divergent conceptions. But what do these accounts add to normative bioethics? What is solidarity’s distinctive social normative role? Prainsack and Buyx suggest that solidarity be understood as the ‘putty’ of justice. I argue here that the putty metaphor is deeply insightful and—when spelled out in detail—successfully explicates solidarity’s social normative function. Unfortunately, Prainsack and Buyx’s own account cannot play this role. I propose instead that the putty metaphor supports a conception of (...) solidarity as equity. This proposal enables us to answer whether and when we should act in solidarity, and with whom, while also capturing the putty metaphor and hence answering a basic question: what is solidarity for? (shrink)

Precision medicine is an emerging approach to individualized care. It aims to help physicians better comprehend and predict the needs of their patients while effectively adopting in a timely manner the most suitable treatment by promoting the sharing of health data and the implementation of learning healthcare systems. Alongside its promises, PM also entails the risk of exacerbating healthcare inequalities, in particular between ethnoracial groups. One often-neglected underlying reason why this might happen is the impact of structural racism on PM (...) initiatives. Raising awareness as to how structural racism can influence PM initiatives is paramount to avoid that PM ends up reproducing the pre-existing health inequalities between different ethnoracial groups and contributing to the loss of trust in healthcare by minority groups. We analyse three nodes of a process flow where structural racism can affect PM’s implementation. These are: the collection of biased health data during the initial encounter of minority groups with the healthcare system and researchers, the integration of biased health data for minority groups in PM initiatives and the influence of structural racism on the deliverables of PM initiatives for minority groups. We underscore that underappreciation of structural racism by stakeholders involved in the PM ecosystem can be at odds with the ambition of ensuring social and racial justice. Potential specific actions related to the analysed nodes are then formulated to help ensure that PM truly adheres to the goal of leaving no one behind, as endorsed by member states of the United Nations for the 2030 Agenda for Sustainable Development. Structural racism has been entrenched in our societies for centuries and it would be naïve to believe that its impacts will not spill over in the era of PM. PM initiatives need to pay special attention to the discriminatory and harmful impacts that structural racism could have on minority groups involved in their respective projects. It is only by acknowledging and discussing the existence of implicit racial biases and trust issues in healthcare and research domains that proper interventions to remedy them can be implemented. (shrink)

Medical screening programs have been established based on the idea of early treatment and prevention. The selection of tests as well as the diseases tested for that are included in a screening need to be ethically justified. This article looks at criteria for screening such as severity of a disease and efficiency of a test and their applicability for newly developed preconceptional genetic carrier screening. Preconceptional genetic carrier screening can be used by couples planning a pregnancy in order to learn (...) it they are both carriers of a recessive inherited diseases und thus have an increased risk of having an affected child. It is argued that introducing fuzzy logic helps to overcome a binary logic of ethical decisions and to discuss ethical problems connected to the selection of diseases for preconceptional genetic carrier screening in a more nuanced way. With ongoing research about the relationship between genotype and phenotype as well as current development of new genetic screening methods the selection of tests and diseases will have to deal with knowledge deficits which fuzzy logic can help to handle. (shrink)

The concept of autonomy plays a central role in bioethics,1 but there is no consensus as to how we should understand it beyond a general notion of self-determination. The conception of autonomy deployed in applied ethics2 can have crucial ramifications when it is applied in real-world scenarios, so it is important to be clear. However, this clarity is often lacking when autonomy is discussed in the bioethics literature. In this paper we outline three different conceptions of autonomy, and argue that (...) a substantive, perfectionist approach meets the theoretical requirements for an account of autonomy and also provides practical guidance. As Rebecca Walker argues, bioethics requires a more conceptually adequate account... (shrink)

Since the 1970s, prenatal testing has been integrated into many health care systems on the basis of two competing and largely irreconcilable rationales. The reproductive autonomy rationale focuses on nondirective counseling and consent as ways to ensure that women's decisions about testing and subsequent care are informed and free of undue pressures. It also represents an easily understandable and ethically convincing basis for widespread access to prenatal testing, since the value of autonomy is well established in Western bioethics and widely (...) recognized by funders of health care. In contrast, the public health rationale approaches prenatal testing as designed to reduce the incidence of certain conditions in the population to reduce the burden of disease. This rationale emphasizes the societal consequences of reproduction and the aggregate impact of women's individual reproductive decisions on the overall health of future populations. In this essay, I argue that, despite what could be seen as a persistent failure to meet the ideals of reproductive autonomy, resisting the public health rationale as a basis for prenatal screening is ethically and pragmatically crucial. I recommend policy mechanisms that can enhance reproductive autonomy at a societal level to support choice at the individual level. (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)

Pre-natal-diagnosis technologies allow parents to discover whether their child is likely to suffer from serious disability. One argument for state funding of access to such technologies is that doing so would be “cost-effective”, in the sense that the expected financial costs of such a programme would be outweighed by expected “benefits”, stemming from the births of fewer children with serious disabilities. This argument is extremely controversial. This paper argues that the argument may not be as unacceptable as is often assumed. (...) In doing so, it sets out a more general framework for assessing the relevance of efficiency calculations to policy-making. The final section also investigates the relationship between the paper’s arguments and claims about parental responsibility for child-bearing and rearing, with reference to Scanlon’s work on “substantive responsibility”. (shrink)

This book involves an in-depth analysis of the ethical, political and philosophical issues related to health-oriented screening programs.

Eugenics casts a long shadow over contemporary genetics. Any measure, whether in clinical genetics or biotechnology, which is suspected of eugenic intent is likely to be opposed on that ground. Yet there is little consensus on what this word signifies, and often only a remote connection to the very complex set of social movements which took that name. After a brief historical summary of eugenics, this essay attempts to locate any wrongs inherent in eugenic doctrines. Four candidates are examined and (...) rejected. The moral challenge posed by eugenics for genetics in our own time, I argue, is to achieve social justice. (shrink)

Prenatal screening, consisting of maternal serum screening and nuchal translucency screening, is on the verge of expansion, both by being offered to more pregnant women and by screening for more conditions. The Society of Obstetricians and Gynaecologists of Canada and the American College of Obstetricians and Gynecologists have each recently recommended that screening be extended to all pregnant women regardless of age, disease history, or risk status. This screening is commonly justified by appeal to the value of autonomy, or women's (...) choice. In this paper, I critically examine the value of autonomy in the context of prenatal screening to determine whether it justifies the routine offer of screening and the expansion of screening services. I argue that in the vast majority of cases the option of prenatal screening does not promote or protect women's autonomy. Both a narrow conception of choice as informed consent and a broad conception of choice as relational reveal difficulties in achieving adequate standards of free informed choice. While there are reasons to worry that women's autonomy is not being protected or promoted within the limited scope of current practice, we should hesitate before normalizing it as part of standard prenatal care for all. (shrink)

Susan has been profoundly deaf since childhood. She is a hearing aid wearer, and likes to use the induction loops built into some public spaces, such as theaters and cinemas, to help cut down the background noise that can make hearing speech very difficult. But this depends on the building having an induction loop fitted and properly maintained. Like many other induction loop users, Susan frequently finds that the advertised loop system is either working poorly or not working at all. (...) Almost as often, she then has the experience of making a complaint about it only to have the problem denied. If she persists, she is often then met... (shrink)

Geneticization is a broad term referring to several related processes such as a spreading tendency to use a genetic model of disease explanation, a growing influence of genetics in medical practice, and the slow changing of individual and societal attitudes towards reproduction, prevention and control of disease. These processes can be demonstrated in medical literature on preventive genetic screening and counselling programs for β-thalassaemia in Cyprus, the United Kingdom and Canada. The preventive possibilities of the new genetic and diagnostic technologies (...) have been quickly understood and advocated by health professionals, and their educational strategies have created a web of social control, in marked contrast to the alleged voluntary decision-making process and free choice. Genetic diagnostic technologies have led to considerable changes in control and management of β-thalassaemia, and have generated a number of unresolved incongruities. (shrink)

In this paper I argue that bioethics is in crisis and that it will not have a future unless it begins to embrace a more Socratic approach to its leading assumptions. The absence of a critical and sceptical spirit has resulted in little more than a dominant ideology. I focus on three key issues. First, that too often bioethics collapses into medical ethics. Second, that medical ethics itself is beset by a lack of self-reflection that I characterize here as a (...) commitment to three dogmas. Third, I offer a more positive perspective by suggesting how bioethics may benefit from looking towards public health ethics as a new source of inspiration and direction. (shrink)

In a project The Hastings Center is now running on the future of prenatal testing, we are encountering clear examples, both in established law and in the practices of individual providers, of failures to respect women's reproductive autonomy: when testing is not offered to certain demographics of women, for instance, or when the choices of women to terminate or continue pregnancies are prohibited or otherwise not supported. But this project also raises puzzles for reproductive autonomy. We have learned that some (...) clinicians and patients do not discuss the fact that prenatal testing can lead to a decision about whether to terminate a pregnancy—they just don't talk about it. And while the decision whether to agree to prenatal screening and diagnostic testing is to be made with women's free and informed consent, many screening tests have been routinized in such a way that some women do not even recall agreeing to testing, while others feel that agreeing to testing is what their clinicians expect of them or that the testing is necessary to protect themselves and their families from the significant financial hardship of raising a child with a disability. In the face of these pressures, can one really say that women are freely choosing to undergo testing or are freely choosing to continue or terminate a pregnancy following receipt of test results? The reality of these pressures is requiring us to consider expanding the scope of our investigation beyond the clinical encounter to the broader context—to think harder about what reproductive autonomy means and how best to enhance it. (shrink)