Recent preclinical studies have shown the feasibility of specific variants of nuclear transfer to prevent mitochondrial DNA disorders. Nuclear transfer could be a valuable reproductive option for carriers of mitochondrial mutations. A clinical application of nuclear transfer, however, would entail germ-line modification, more specifically a germ-line modification of the mitochondrial genome. One of the most prominent objections against germ-line modification is the fear that it would become possible to alter ‘essential characteristics’ of a future person, thereby possibly violating the child's (...) right to an open future. As only the nuclear DNA would contain the ingredients for individual characteristics, modification of the mtDNA is often considered less controversial than modification of the nuclear DNA. This paper discusses the tenability of this dichotomy. After having clarified the concept of germ-line modification, it argues that modification of the mtDNA is not substantively different from modification of the nuclear DNA in terms of its effects on the identity of the future person. Subsequently the paper assesses how this conclusion affects the moral evaluation of nuclear transfer to prevent mtDNA disorders. It concludes that the moral acceptability of germ-line modification does not depend on whether it alters the identity of the future child—all germ-line modifications do—but on whether it safeguards the child's right to an open future. If nuclear transfer to prevent mtDNA disorders becomes safe and effective, then dismissing it because it involves germ-line modification is unjustified. (shrink)

This article presents an overview ofregulations, guidelines and societal debates ineight member states of the EC about a)embryonic and fetal tissue transplantation(EFTT), and b) the use of human embryonic stemcells (hES cells) for research into celltherapy, including `therapeutic' cloning. Thereappears to be a broad acceptance of EFTT inthese countries. In most countries guidance hasbeen developed. There is a `strong' consensusabout some of the central conditions for `goodclinical practice' regarding EFTT.International differences concern, amongstothers, some of the informed consent issuesinvolved, and the (...) questions whether anintermediary organisation is necessary, whetherthe methods of abortion may be influenced bythe possible use of EFT, and whether EFTTshould only be used for the experimentaltreatment of rare disorders. The potential useof hES cells for research into cell therapy hasgiven a new impetus to the debate about (human)embryo research. The therapeutic prospects withregard to the retrieval and research use of hEScells appear to function as a catalyst for theintroduction of less restrictive regulationsconcerning research with spare embryos, atleast in some European countries. It remains tobe seen whether the prospect of treatingpatients suffering from serious disorders withtransplants produced by therapeutic cloningwill decrease the societal and moral resistanceto allowing the generation of embryos for`instrumental' use. (shrink)

In debates about genetic testing of children, as well as about disclosing unsolicited findings (UFs) of pediatric exome sequencing, respect for future autonomy should be regarded as a prima facie consideration for not taking steps that would entail denying the future adult the opportunity to decide for herself about what to know about her own genome. While the argument can be overridden when other, morally more weighty considerations are at stake, whether this is the case can only be determined in (...) concrete cases. Importantly, when children grow into adolescents, respect for future autonomy will have to give way to respecting their emerging autonomy. When pediatric exome sequencing is done for complex conditions not involving developmental delay, respect for the child’s future or emerging autonomy should be a primary consideration for those charged with deciding on behalf of the child. Building on what Emanuel and Emanuel have termed the ‘deliberative model’ of shared decision making, we argue that if parents fail to give these considerations their due, professionals should actively invite them to do so. Taking a directive stance may be needed in order to make sure that the future or emerging autonomy of the child are duly considered in the decision-making process, but also to help the parents and themselves to shape their respective roles as responsible care-givers. (shrink)

In order to study early human development while avoiding the burdens associated with human embryo research, scientists are redirecting their efforts towards so-called human embryo-like structures (hELS). hELS are created from clusters of human pluripotent stem cells and seem capable of mimicking early human development with increasing accuracy. Notwithstanding, hELS research finds itself at the intersection of historically controversial fields, and the expectation that it might be received as similarly sensitive is prompting proactive law reform in many jurisdictions, including the (...) Netherlands. However, studies on the public perception of hELS research remain scarce. To help guide policymakers and fill this gap in the literature, we conducted an explorative qualitative study aimed at mapping the range of perspectives in the Netherlands on the creation and research use of hELS. This article reports on a subset of our findings, namely those pertaining to (the degrees of and requirements for) confidence in research with hELS and its regulation. Despite commonly found disparities in confidence on emerging biotechnologies, we also found wide consensus regarding the requirements for having (more) confidence in hELS research. We conclude by reflecting on how these findings could be relevant to researchers and (Dutch) policymakers when interpreted within the context of their limitations. (shrink)

The shift in the prevailing view of alcoholism from a moral paradigm towards a biomedical paradigm is often characterized as a form of biomedicalization. We will examine and critique three reasons offered for the claim that viewing alcoholism as a disease is morally problematic. The first is that the new conceptualization of alcoholism as a chronic brain disease will lead to individualization, e.g., a too narrow focus on the individual person, excluding cultural and social dimensions of alcoholism. The second claim (...) is that biomedicalization will lead to stigmatization and discrimination for both alcoholics and people who are at risk of becoming alcoholics. The third claim is that as a result of the biomedical point of view, the autonomy and responsibility of alcoholics and possibly even persons at risk may be unjustly restricted. Our conclusion is that the claims against the biomedical conceptualization of alcoholism as a chronic brain disease are neither specific nor convincing. Not only do some of these concerns also apply to the traditional moral model; above that they are not strong enough to justify the rejection of the new biomedical model altogether. The focus in the scientific and public debate should not be on some massive “biomedicalization objection” but on the various concerns underlying what is framed in terms of the biomedicalization of alcoholism. (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)

Der im Frühjahr 44 v. Chr. entstandene Dialog "Über die Wahrsagung" versteht sich zunächst als Ergänzung zur Schrift "Vom Wesen der Götter". Er geht der Frage nach, ob die Götter sich der Menschen in der Weise annehmen, dass sie ihnen einen Weg zur Vorhersage der Zukunft eröffnen. Gegen diese stoische Position, wie sie im 1. Buch von Ciceros Bruder Quintus entwickelt wird, zieht der Autor im 2. Buch selbst zu Felde, höchst geistreich und im Wesentlichen dem neuakademischen Skeptiker Karneades folgend. (...) Obwohl der Text mit einem Bekenntnis zur vorsichtigen Zurückhaltung im Urteilen ausklingt, hat ihn die Nachwelt überwiegend im "aufklärerischen" Sinne verstanden: Besonders das 18. Jahrhundert beschäftigte sich intensiv damit und fand in Cicero einen frühen Kronzeugen für die eigene Auffassung, dass alle Formen der Zukunftserhellung auf reinem "Aberglauben" beruhten. Tatsächlich stellen sich die Verhältnisse insofern verwickelter dar, als "Wahrsagung" aus dem antiken öffentlichen und privaten Leben überhaupt nicht wegzudenken ist; auch Cicero will dies nicht, und seine eigene Haltung dem überwältigenden und befremdlichen Phänomen gegenüber ist eher durch Zweifel als durch einfache Ablehnung gekennzeichnet. Aus dem reichen Schrifttum der Antike, das dem Gegenstand gilt, ist allein Ciceros Werk erhalten geblieben. Sein religionsgeschichtlicher Wert ist unschätzbar, weit über die Alte Welt hinaus. Anschaulich und anhand vieler Beispiele führt es die verschiedenen Formen der Wahrsagung vor: griechische Orakel, ekstatisches Sehertum, Träume, Lose, Astrologie, römische Auspizien und etruskische Haruspizien. Mit Einführung, Anmerkungen und Literaturhinweisen. (shrink)

Der Beschreibung der zeitlichen Entwicklung lebender Systeme kann eine reine Differentialanalyse nicht genügen. In solchen Fällen muss man sich an Stelle der gewöhnlichen Differentialgleichungen der integraldifferentiellen, bezw. der Integralgleichungen bedienen. Zur leichteren Veranschaulichung der mathematischen Darstellung betrachtet Verfasser zuerst diejenigen Systeme, deren innerer Zustand sich durch ein einziges Parameterc bestimmen lässt. Die zeitliche Entwicklung eines leblosen Systems dieser Klasse werde durch die Differentialgleichung $$\frac{{dc}}{{dt}} = kf...$$ dargestellt, wot=Zeit, undk eine Funktion der äusseren Parameterα, Β, γ. ist. Im Falle eines jeden (...) Systems sind die äusseren Parameterα, Β, γ. charakteristische individuelle Funktionen der Zeit. Misst manc am. Zeitpunktt, so lässt sich die Zukunft des Systems vermittelst der Gleichung berechnen, wenn die zukünftigen Werte der äusseren Parameter gegeben sind. Solche Systeme nennt Verfasser nicht-historische Systeme. Im Falle der lebenden Systeme werde die zeitliche Entwicklung durch die Integral-differentialgleichung $$\frac{{dc}}{{dt}} = k_1 f_1 + \mathop \smallint \limits_{t - \lambda }^t k_2 f_2 dt........$$ dargestellt, wof 1 undf 2 Funktionen des Zustandsparametersc, undk 1 undk 2 Funktionen der äusseren Parameter sind. Das Zeitintegral erstreckt sich auf das vergangene Zeitintervalt-λ →t, woλ einen positiven endlichen konstanten Wert besitzt. Diese Systeme nennt Verfasser historische Systeme. Setzt manH für das darin enthaltene Integralglied, so verwandelt sich die Gleichung in: $$\frac{{dc}}{{dt}} = k_1 f_1 + H..........$$ Misst man nunc am Zeitpunktt, so kann man in diesem Fall die Zukunft des Systems ohne Kenntnis des historischen GliedsH nicht berechnen. Das Vorkommen des historischen IntegralgliedsH nennt Verfasser Chronoholismus. Man kann deshalb die historischen Systeme auch chronoholistische Systeme nennen. Die biologische Interpretation dieser Betrachtungsweise wird vom Verfasser diskutiert, und die Gleichung auf Systeme mit erblichen Eigenschaften ausgedehnt. Es werden zuletzt Systeme mit vielen Zustandsparametern in gewissen einfachen Fällen kurz behandelt. L'analyse différentielle ne suffit pas, selon l'avis de de l'auteur, pour la description de l'évolution des systèmes vivants au cours des temps. Il faut utiliser dans ces cas les équations intégro-différentielles ou intégrales. Pour faciliter le traÎtement mathématique, on peut considérer d'abord les systèmes dont l'état intérieur est défini par un seul paramètrec. L'évolution d'un système inanimé de cette classe se laisse décrire par l'équation différentielle $$\frac{{dc}}{{dt}} = k f,...........$$ oùt=temps, etk est une fonction déterminée des paramètres extérieurs α,Β, γ. Si l'on connaÎtc à un temps donnét, l'état du système à un temps futurt′ se laisse prévoir au moyen de l'équation, quand les valeurs des paramètres extérieurs dans l'intervallet → t∼' sont fixées. L'auteur appelle les systèmes de cette classe des systèmes non-historiques. Pour les systèmes vivants, il faut se servir, selon l'avis de l'auteur, des équations intégro-différentielles. Pour les systèmes définis par un seul paramètrec, on peut se servir, par exemple, de l'équation $$\frac{{dc}}{{dt}} = k_1 f_1 + \mathop \smallint \limits_{t - \lambda }^t k_2 f_2 dt........$$ où k1 et k2 sont des fonctions déterminées des paramètres extérieurs. L'intégrale s'étend sur l'intervallet-λ→ t où λ est positif et constant. En indiquant le terme intégral par le symboleH, on peut écrire $$\frac{{dc}}{{dt}} = k_1 f_1 + H..........$$ La connaissance de c à un temps donnét ne laisse pas prévoir l'état du système à un temps futurt′ sans connaissance du terme historiqueH, quand mÊme les paramètres α, Β, γ,..., seraient des fonctions déterminées du temps dans l'intervallet→t′. L'auteur appelle l'existence du terme intégral historiqueH le chronoholisme. On peut appeler les systèmes de cette classe des systèmes historiques ou chronoholistiques. L'interprétation biologique de cette faÇon de traÎter les systèmes vivants est discutée par l'auteur, qui étend l'équation pour le faire représenter aussi les propriétés héréditaires des Êtres vivants. Quelques cas de systèmes dont l'état intérieur est défini par plusieurs paramètres et plusieurs phases sont traités brièvement. (shrink)

Several threads of research towards developing artificial gametes are ongoing in a number of research labs worldwide. The development of a technology that could generate gametes in vitro has significant potential for human reproduction, and raises a lot of interest, as evidenced by the frequent and extensive media coverage of research in this area. We have asked researchers involved in work with artificial gametes, ethicists, and representatives of potential user groups, how they envisioned the use of artificial gametes in human (...) reproduction. In the course of three focus groups, the participants commented on the various aspects involved. The two recurring themes were the strength of the claim of becoming a parent genetically, and the importance of responsible communication of science. The participants concurred that (a) the desire or need to have genetic offspring of one’s own does not warrant the investment of research resources into these technologies, and that (b) given the minefield in terms of moral controversy and sensitivity that characterises the issues involved, how information is communicated and handled is of great importance. (shrink)

Mackenzie and Watts (2011) discuss the role of emotions in decision-making capacity (DMC) for medical treatment decisions. They are concerned that “the rights of the neurodiverse are at risk as the...

Emerging biotechnology may soon allow the creation of genetically human organs inside animals, with non-human primates and pigs being the best candidate species. This prospect raises the question of whether creating organs in primates in order to then transplant them into humans would be more acceptable than using them for research. In this paper, we examine the validity of the purported moral distinction between primates and other animals, and analyze the ethical acceptability of using primates to create organs for human (...) use. (shrink)

Keine Denkungsart kann es in Sachen Wandlungsfähigkeit mit dem Liberalismus aufnehmen. Ohne diese Eigenschaft hätte der Liberalismus kaum über Jahrhunderte hinweg einflussreich bleiben können. Zugleich ergeben sich aus dieser Wandelbarkeit zwei wichtige Implikationen für ein tieferes Verständnis des Liberalismus. Erstens erschwert sie die Herausarbeitung dessen, was am Liberalismus eigentlich zentral ist. Welche Prinzipien und Werte sind partout nicht verhandelbar? Zweitens legt seine Wandelbarkeit nahe, ihn in Krisenzeiten – wie heute und nicht zum ersten Mal –nicht voreilig abzuschreiben. Welche Art des (...) Wandels aber müsste der Liberalismus durchlaufen, um die gesellschaftlichen Probleme unserer Zeit zu meistern? Diese beiden Fragen fungieren als Ankerpunkte des Handbuches: Einerseits will es zum Kern des Liberalismus vordringen, indem es Prinzipien und Werte des Liberalismus auslotet, und andererseits dessen Stellung bezüglich aktueller Herausforderungen beleuchten. Auf dem Weg dorthin werden klassische Vertreterinnen und Vertreter sowie wichtige historische Ereignisse vorgestellt, in denen der Liberalismus eine wichtige Rolle gespielt hat, Konkurrenten und Varianten des Liberalismus besprochen sowie „über den Westen hinaus“ geschaut. (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 this article we explore the ethical issues raised by permitting patients to pay for participation in clinical trials, and discuss whether there are any categorical objections to this practice. We address key considerations concerning payment for participation in trials, including patient autonomy, risk/benefit and justice, taking account of two previous critiques of the ethics of P4. We conclude that such trials could be ethical under certain strict conditions, but only if other potential sources of funding have first been explored (...) or are unavailable. (shrink)

Many European countries uphold a ‘high risk of a serious condition’ requirement for limiting the scope of preimplantation genetic diagnosis (PGD). This ‘front door’ rule should be loosened to account for forms of PGD with a divergent proportionality. This applies to both ‘added PGD’ (aPGD), as an add‐on to in vitro fertilization (IVF), and ‘combination PGD’ (cPGD), for a secondary disorder in addition to the one for which the applicants have an accepted PGD indication. Thus loosening up at the front (...) has implications at the back of PGD treatment, where a further PGD rule says that ‘affected embryos’ (in the sense of embryos with the targeted mutation or abnormality) should not be transferred to the womb. This ‘back door’ rule should be loosened to allow for transferring ‘last chance’ affected embryos in aPGD and cPGD cases, provided this does not entail a high risk that the child will have a seriously diminished quality of life. (shrink)

Youth antisocial behaviour is frequently considered to be displayed by children and adolescents who suffer from behavioural disorders. Consequently, attempts to reduce ASB have increasingly comprised mental health interventions. Moreover, early signalling of children at risk and early prevention of behavioural problems are regarded as crucial remedies. Critical investigations of these developments, however, are in particular concerned with the consequent medicalization of society and the behaviour exhibited by infants, children and adolescents. Consequently, the new Dutch youth law even refers to (...) demedicalization as a central aim. From an ethical point of view, this article critically discusses the meaning and relevance of the medicalization reproach in the context of ASB. The aim is to show that the term medicalization can reasonably be attached to three different developments: the biomedical turn, an increase in youth mental health care and early signalling and prevention. The ethical implications of these developments, however, are diverse, referring to both risks and benefits. By itself, neither the term medicalization nor demedicalization carries a self-evident normative meaning. Therefore, a careful ethical analysis is needed to reveal which social developments are actually recommendable or disadvantageous. (shrink)

Experimental vaccines are being developed for the treatment of ‘unhealthy lifestyles’ and associated chronic illnesses. Policymakers and other stakeholders will have to deal with the ethical issues that this innovation path raises: are there morally justified reasons to integrate these innovative biotechnologies in future health policies? Should public money be invested in further research? Focusing on the case of an experimental nicotine vaccine, this article explores the ethical aspects of ‘lifestyle vaccines’ for public health. Based on findings from a qualitative (...) study into a vaccine for smoking cessation, the article articulates possible value conflicts related to nicotine vaccination as an intervention in tobacco control. The ‘vaccinization’ of lifestyle disease piggybacks on the achievements of classic vaccines. Contrary to expectations of simplicity and success, quitting smoking with a vaccine requires a complex supportive network. Social justice and public trust may become important ethical challenges when deciding whether to use further public funds for research or whether to implement these innovative vaccines in the future. (shrink)

Until the late twentieth century, there were three main political currents in the Netherlands: Christian, Labor, and Liberal, giving Christian party politics a stronger position than in European countries with a binary division between conservative and progressive. The history of the debate about embryo research coincides with the end of this period. Whereas in the 1980s the Christian Democrat party still had strong religiously motivated views about embryo protection, it has since lost both the power and the drive to pursue (...) this. However, due to strategic opportunities arising in the margin of Dutch coalition politics, smaller parties inspired by Christian belief are still quite influential on issues of medical ethics in the highly fragmented political landscape of the present. (shrink)

The advent of new genetic and genomic technologies may cause friction with the principle of respect for autonomy and demands a rethinking of traditional interpretations of the concept of informed consent. Technologies such as whole‐genome sequencing and micro‐array based analysis enable genome‐wide testing for many heterogeneous abnormalities and predispositions simultaneously. This may challenge the feasibility of providing adequate pre‐test information and achieving autonomous decision‐making. At a symposium held at the 11th World Congress of Bioethics in June 2012 (Rotterdam), organized by (...) the International Association of Bioethics, these challenges were presented for three different areas in which these so‐called ‘new genetics’ technologies are increasingly being applied: newborn screening, prenatal screening strategies and commercial personal genome testing. In this article, we build upon the existing ethical framework for a responsible set‐up of testing and screening offers and reinterpret some of its criteria in the light of the new genetics. As we will argue, the scope of a responsible testing or screening offer should align with the purpose(s) of testing and with the principle of respect for autonomy for all stakeholders involved, including (future) children. Informed consent is a prerequisite but requires a new approach. We present preliminary and general directions for an individualized or differentiated set‐up of the testing offer and for the informed consent process. With this article we wish to contribute to the formation of new ideas on how to tackle the issues of autonomy and informed consent for (public) healthcare and direct‐to‐consumer applications of the new genetics. (shrink)

Using a recent result of Busch and Gudder, we reconsider a theorem of Ludwig which allows one to identify a class of effect automorphisms as the symmetry transformations in quantum mechanics.

RESUMO O objetivo deste artigo é analisar a concepção de liberdade encontrada em "Discourses concerning government" de Algernon Sidney. Mantendo a perspectiva republicana, a liberdade é definida pela ausência de dominação, ou seja, pela não submissão, sujeição ou exposição à vontade arbitrária de outra pessoa; e assumindo a perspectiva jusnaturalista, a liberdade é considerada um direito natural, inerente à condição humana, que deve ser preservado e assegurado pela autoridade política. Pretende-se discutir como Sidney articula essas duas perspectivas em sua teoria (...) política, projetando a concepção republicana de liberdade na modernidade.ABSTRACT The objective of this paper is to analyze the concept of freedom found in Algernon Sidney’s "Discourses Concerning government". Keeping the republican thought, freedom is defined by the absence of domination, i.e., the denial of submission, bondage or exposure to the arbitrary will of another person; and taking the jusnaturalist thought, freedom is considered a natural right inherent to the human condition, which must be preserved and guaranteed by the political authority. I intend to discuss how Sidney articulates these two perspectives in his political theory, outlining the republican conception of freedom in modernity. (shrink)

Este artigo pretende discutir os conceitos de direito natural e propriedade no Iuri universi distributio (1578) e as suas conseqüências políticas no Methodus ad facilem historiarum cognitionem (1566) e no Les Six Livres de la République (1576), de Jean Bodin.

This article aims to discuss the concepts of natural right and property in Bodin's Iuri distributio universi and the political consequences of these ideas in Methodus ad facilem historiarum cognitionem and Les Six Livres de la République .Este artigo pretende discutir os conceitos de direito natural e propriedade no Iuri universi distributio e as suas conseqüências políticas no Methodus ad facilem historiarum cognitionem e no Les Six Livres de la République , de Jean Bodin.

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)