Newborn screening for genetic diseases has developed rapidly in Western countries. These biopolitics raise the question of birth as a sociological “knot” insofar as it is the threshold between the child and the fetus. The question therefore addressed in this text, based on a field study of newborn screening for cystic fibrosis in France, is that of the link between the quest for good health and the elimination of poor health. Do they reinforce each other or, on the contrary, are (...) they contradictory? I analyze the positions of both mothers of screened children and clinicians regarding the following three points: prenatal diagnosis to preclude sets of sick siblings, identification of heterozygous individuals, and generalized prenatal screening. This study shows how increasingly attentive patient care and an increasingly demanding approach to prenatal diagnosis reinforce one another. It also analyzes the role of taking action early on and evaluating the lives of sick or disabled people in this process. In conclusion, I engage a more general discussion about what I suggest calling a “quality life.”. (shrink)

ZusammenfassungWie ist die Auswahl zukünftiger Kinder in moralischer Hinsicht zu beurteilen? Der Beitrag untersucht diese Frage auf der Basis eines liberalen Prinzips der reproduktiven Freiheit, welches Handlungsspielräume und Privatsphäre in Fragen der Fortpflanzung verteidigt, wenn nicht gewichtige moralische Gründe aufgezeigt werden können, welche den Handlungen der beteiligten Personen Grenzen setzen. Er beschränkt sich auf die negative Auswahl, d. h. die Auswahl von gesunden Kindern anstelle von zukünftigen Kindern mit Behinderung oder gesundheitlicher Beeinträchtigung. Erörtert werden selektionsbefürwortende Überlegungen, welche das Wohlergehen des (...) zukünftigen Kindes in den Fokus rücken, und zwei grundsätzlich selektionskritische Argumente. Das erste verweist auf parentale Tugenden, welche mit der Auswahl zukünftiger Kinder unvereinbar wären. Bei dem zweiten handelt es sich um den Einwand der Diskriminierung von Menschen mit Behinderung. Das Ergebnis der Diskussion ist, dass es zukünftigen Eltern in den meisten Fällen freisteht, die Entscheidung über die Auswahl ihrer Kinder im Licht ihrer Ziele und Werte zu treffen. (shrink)

Die breite Einführung nicht-invasiver pränataler Tests sowie die Ausweitung der Testziele über Trisomien hinaus machen es notwendig, Sinn und Ziel der pränatalen Diagnostik als emergente soziale Praxis grundsätzlich zu diskutieren. Wenn, wie angenommen wird, PND nicht zu eugenischen Zwecken, sondern zur Stärkung der Autonomie dienen soll, muss gefragt werden, welche Bedeutung die Entscheidungen haben, ein bestimmtes zukünftiges Kind zu gebären. Stephen Wilkinson hat vorgeschlagen, PND als eine Form „selektiver Reproduktion“ zu verstehen. In diesem Paper wird geprüft, ob die Charakterisierung der (...) Entscheidung nach PND als „Selektion“ zutrifft und welche moralischen Vorannahmen ihr zugrunde liegen.Es zeigt sich, dass das Konzept der „selektiven Reproduktion“ die Handlungen der PND inakkurat repräsentiert. Es beinhaltet zudem sowohl eine Abstrahierung als auch eine Distanzierung. Es nimmt an, dass Frauen und Paare entweder falls nötig mehrere Schwangerschaften planen, um ein gesundes Kind zu erzeugen, oder sich als Ausführende einer selektiven Strategie auf der Populationsebene verstehen. Die Einschränkung der ethischen Diskussion auf das Problem der Selektion verdeckt zwei wichtige Problemfelder, die die konflikthaltige Situation der PND aus der Perspektive der Frau oder des Paares charakterisieren: die Schwangerschaft als persönliche Beziehung und den Akt des Abbruchs der Schwangerschaft. Aufgrund seiner impliziten Normativität wird „selektive Fortpflanzung“ als sinnvolle Bezeichnung für die Praxis der PND zurückgewiesen. (shrink)

The routinization of prenatal diagnosis is the source of bioethical and policy debates regarding choice, autonomy, access, and protection. To understand these debates in the context of cultural diversity and moral pluralism, we compare Israel and Germany, focusing on two recent repro-genetic “hot spots” of such policy-making at the beginning of life: pre-implantation genetic diagnosis and non-invasive prenatal genetic testing, two cutting-edge repro-genetic technologies that are regulated and viewed very differently in Germany and Israel, reflecting different medicolegal policies as well (...) as public and bioethical considerations. First, we compare policy-making in the context of PGD for HLA typing, used to create sibling donors, approved in Israel under specific conditions while prohibited in Germany. Second, we compare policy-making in the context of NIPT, which came under fire in Germany, while in Israel there has been little public debate about it. Both countries justify their contrasting policies as reflecting a concern for the well-being and care of the embryo/child, thus highlighting different concepts of embryo/child protection, autonomy, family relations, and the impact of religion and history on the promotion/protection of life. We use the juxtaposition of PGD and NIPT to highlight some inconsistencies in policies concerning the protection of extra- and intra-corporeal embryos. We conclude by drawing on the comparison to show how national variations exist alongside co-evolution. (shrink)

Preterm birth is defined as any birth that occurs prior to 37 weeks gestation, and is a leading cause of infant mortality, neurological disabilities, breathing, feeding and vision problems, and hea...

In analyzing oppressive systems like racism, social theorists have articulated accounts of the dynamic interaction and mutual dependence between psychological components, such as individuals’ patterns of thought and action, and social components, such as formal institutions and informal interactions. We argue for the further inclusion of physical components, such as material artifacts and spatial environments. Drawing on socially situated and ecologically embedded approaches in the cognitive sciences, we argue that physical components of racism are not only shaped by, but also (...) shape psychological and social components of racism. Indeed, while our initial focus is on racism and racist things, we contend that our framework is also applicable to other oppressive systems, including sexism, classism, and ableism. This is because racist things are part of a broader class of oppressive things, which are material artifacts and spatial environments that are in congruence with an oppressive system. (shrink)

Are sociologists always critical about genetics? Are philosophers always more supportive? This is the impression of many sociologists in the United Kingdom who argue that contemporary British philosophers criticise genetic technologies and applications in ways that scientists and medical doctors can deal with. They emphasise matters like informed consent, but pay less or no attention to the wider social consequences of technologies, practices and policies. Philosophers in their turn may see sociologists as irrationally hostile to science and medical practice. Some (...) of them refuse to criticise genetics, arguing that there is nothing to criticise. Others feel that their criticisms are in fact more accurate than the concerns raised by sociologists. And yet others point out that the impression of uncritical support can only be true of a certain specific group. Philosophers have so many internal disagreements among themselves that the generalisation can hardly be justified. In this paper an attempt is made by a sociologist and a philosopher to understand how sociological and philosophical perspectives on bioethics may differ in discussions about genetics. The paper, which proceeds in dialogue form, is based on our email correspondence on the advantages and disadvantages of genetic technologies and their applications, and on the idea of social consequences as understood by scholars from two different disciplines. (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)

With a few notable exceptions disability studies has not taken account of intersexuality, and it is principally through the lenses of feminist and queer-theory oriented ethical discussions but not through ‘straight’ bioethics that modes valuing intersex difference have been proposed. Meanwhile, the medical presupposition that intersex characteristics are inherently disabling to social viability remains the taken-for-granted truth from which clinical practice proceeds. In this paper I argue against bioethical perspectives that justify extensive and invasive pre- and post-natal medical interference to (...) eradicate intersex. I argue instead that to constitute the necessary conditions for the recognition of the intersexed child as a person, a life valid in its own right, clinicians must refrain from aggressive interference. Clinical specialists presuppose that intersexed children will be socially disabled and unrecognizable as persons; frustrated by the general failure of traditional interventions to assign a sex, clinicians are now pursuing prenatal technologies, including selective termination, to erase intersex. (shrink)

Analyser av cellefritt DNA fra foster i gravide kvinners blod gir nye muligheter innen fosterdiagnostikk: Testene er bedre enn eksisterende tester, de reduserer risikoen og er billigere. Flere land har tatt i bruk disse testene, og Helsedirektoratet i Norge har mottatt søknad om å ta i bruk en test som erstatter tidlig ultralyd og blodprøver. Likevel nøler norske myndigheter. Hvorfor gjør de det? Ett av svarene er at non-invasive prenatale tester fører med seg en rekke faglige og moralske spørsmål og (...) gir flere grunnleggende etiske utfordringer. Denne artikkelen gjennomgår et bredt knippe av de utfordringene som NIPT reiser. Hensikten er å synliggjøre hvorfor NIPT påkaller etisk refleksjon og å bidra til en åpen debatt og en transparent beslutningsprosess. Artikkelen identifiserer fem sentrale og konkrete spørsmål for vurderingen av NIPT.Nøkkelord: non-invasiv prenatal diagnostikk, testing, fravalg, foster, blodprøve, ekspressivisme, statsliberalt dilemma, dilemma, abort, retten til ikke å viteEnglish summary: Ethical challenges with non-invasive prenatal tests Non-invasive prenatal testing performed with the use of massively parallel sequencing of cell-free DNA in maternal plasma gives extended possibilities in prenatal screening. The tests are claimed to be better than existing alternative tests, they reduce the risk, and it is claimed they are cheaper. They have been used in several countries since 2012, and the University Hospital of North Norway has applied to the Directorate of Health to replace first trimester ultrasound and plasma screening with NIPT. The Directorate of Health is reluctant to reply. Why is this? One of the answers may be that NIPT raises a series of professional and moral questions, and poses profound ethical challenges. This article reviews a series of the challenges with NIPT. The aim is to highlight why NIPT calls for ethical reflection and to contribute to an open debate and a transparent decision-making process. The article identifies five major questions to address in the assessment of NIPT: What are the criteria for screening and removing certain conditions? How certain do we have to be that these conditions do appear in living children? How should we handle information from NIPT for living persons? How can we avoid that persons with the conditions that are selected for screening and removal are insulted, stigmatized, or discriminated? How can we avoid that systematic screening and removal of fetuses with certain conditions develop norms and values that breach with basic social or ethical principles? (shrink)

Research shows that a high majority of parents receiving prenatal diagnosis of intellectual disability terminate pregnancy. They have reasons for rejecting a child with intellectual disabilities—these reasons are, most commonly, beliefs about quality of life for it or them. Without a negative evaluation of intellectual disability, their choice makes no sense. Disability-based abortion has been critiqued through virtue ethics for being inconsistent with admirable moral character. Parental selectivity conflicts with the virtue of acceptingness and exhibits the vice of wilfulness. In (...) this paper I claim that, beyond failures of moral virtue, disability abortion often involves failures of epistemic virtue on the part of parents. I argue two things: parents believe something false, or at least contested, about life with intellectual disability—and they do so because they are not epistemically conscientious. I first explain why a central motivation for disability abortion—that it prevents harm to the child—is mistaken. I next give a brief account of intellectual virtue and culpable ignorance. I then indicate why many parents fail to be intellectually virtuous when choosing to terminate pregnancy. I focus on elimination of intellectual disability and have little to say about physical and sensory impairments. (shrink)

Corresponding Author, Health Policy & Ethics Fellow, Chronic Disease Prevention & Control Research Center, Department of Medicine, Baylor College of Medicine, 1709 Dryden, Suite 1025, Houston, TX 77030, USA. Tel.: 713.798.5482; Fax: 713 798 3990; Email: danielg{at}bcm.edu ' + u + '@' + d + ' '//--> . Abstract This article defends a broad model of public health, one that specifically addresses the social epidemiologic research suggesting that social conditions are primary determinants of health. The article proceeds by critiquing one (...) of the strongest arguments in favor of a narrow model, advanced by Mark Rothstein. The critique sets up the argument that a model of public health that does not address what actually causes health and disease is unlikely to improve public health. Assessing the substantial evidence regarding the social determinants of health, the article engages the policy paradox that precludes utopian prescriptions but demands more than mere expedience. CiteULike Connotea Del.icio.us What's this? (shrink)

This article offers the critical concept misfit in an effort to further think through the lived identity and experience of disability as it is situated in place and time. The idea of a misfit and the situation of misfitting that I offer here elaborate a materialist feminist understanding of disability by extending a consideration of how the particularities of embodiment interact with the environment in its broadest sense, to include both its spatial and temporal aspects. The interrelated dynamics of fitting (...) and misfitting constitute a particular aspect of world-making involved in material-discursive becoming. The essay makes three arguments: the concept of misfit emphasizes the particularity of varying lived embodiments and avoids a theoretical generic disabled body; the concept of misfit clarifies the current feminist critical conversation about universal vulnerability and dependence; the concept of misfitting as a shifting spatial and perpetually temporal relationship confers agency and value on disabled subjects. (shrink)

A crucial challenge for critical disability studies is developing an argument for why disabled people should inhabit our democratic, shared public sphere. The ideological and material separation of citizens into worthy and unworthy based on physiological variations imagined as immutable differences is what I call eugenic world building. It is justified by the idea that social improvement and freedom of choice require eliminating devalued human traits in the interest of reducing human suffering, increasing life quality, and building a more desirable (...) citizenry. In this essay, I outline the logic of inclusive and eugenic world building, define and explain the role of the "normate" in eugenic logic, and provide a critical disability studies reading of the 2005 novel Never Let Me Go by Kazuo Ishiguro and its 2010 film adaptation. I argue that the ways of being in the world we think of as disabilities must be understood as the natural variations, abilities, and limitations inherent in human embodiment. When this happens, disability will be understood not as a problem to be eliminated but, rather, as a valid way of being in the world that must be accommodated through a sustaining and sustainable environment designed to afford access for a wide range of human variations. (shrink)

The goal of this paper is to offer some remarks about how teachers, especially teachers of moral theories and arguments, should respond to insulting messages about disability that may be expressed in their courses. While there is a strong prima facie presumption for instructors to convey the truth as they see it, this is not an absolute requirement when the views they teach have a tendency to be insulting. I investigate some circumstances in which a moral view embeds and expresses (...) an insulting message about disability and I argue that affording due respect to their students requires ethics instructors to be alert to disparaging messages about disability and to send counter-messages when the views they teach give such messages. (shrink)

Continuing tensions exist between mainstream bioethics and advocates of the disability rights movement. This paper explores some of the grounds for those tensions as exemplified in From Chance to Choice: Genetics and Justice by Allen Buchanan and coauthors, a book by four prominent bioethicists that is critical of the disability rights movement. One set of factors involves the nature of disability and impairment. A second set involves presumptions regarding social values, including the importance of intelligence in relation to other human (...) characteristics, competition as the basis of social organization, and the nature of the parent–child relationship. The authors’ disapproval of certain aspects of the disability rights movement can be seen to be associated with particular positions regarding these factors. Although the authors intend to use a method of ‘broad reflective equilibrium,’ we argue that their idiosyncratic commitment to particular concepts of disability and particular social values produces a narrowing of the moral significance of their conclusions regarding disability rights. (shrink)