Einer der interessantesten der vielfältigen Versuche, die Ethik auf ein festes Fundament zu stellen, ist die Konzeption intrinsischer Werte, die Vorstellung, daß eine objektive Begründung der Ethik vermöge einer intuitiven Erkenntnis des inneren Werts der Dinge möglich sei. Doch diese Vorstellung, die in neuerer Zeit vor allem von Franz Brentano und G.E. Moore vertreten wurde und die heute in Roderick Chisholm ihren prominentesten Anhänger hat, ist nicht zielführend. Dies zu demonstrieren, ist das Ziel des vorliegenden Aufsatzes. Zu diesem Zweck (...) wird zunächst die Konzeption intrinsischer Werte anhand der Lehren Brentanos und Moores in aller Kürze skizziert. Daran anschließend wird erstens versucht, die Sinnhaftigkeit des Konzepts intrinsischer Werte überhaupt in Frage zu stellen. Darüber hinaus aber wird weiters gezeigt, daß selbst dann, wenn man intrinsische Werte entsprechend der von Brentano und Moore vertretenen Auffassung als gegeben annimmt, diese Annahme keine ausreichende Grundlage für eine befriedigende ethische Theorie bereitstellt. (shrink)

Einer der interessantesten der vielfältigen Versuche, die Ethik auf ein festes Fundament zu stellen, ist die Konzeption intrinsischer Werte, die Vorstellung, daß eine objektive Begründung der Ethik vermöge einer intuitiven Erkenntnis des inneren Werts der Dinge möglich sei. Doch diese Vorstellung, die in neuerer Zeit vor allem von Franz Brentano und G.E. Moore vertreten wurde und die heute in Roderick Chisholm ihren prominentesten Anhänger hat, ist nicht zielführend. Dies zu demonstrieren, ist das Ziel des vorliegenden Aufsatzes. Zu diesem Zweck (...) wird zunächst die Konzeption intrinsischer Werte anhand der Lehren Brentanos und Moores in aller Kürze skizziert. Daran anschließend wird erstens versucht, die Sinnhaftigkeit des Konzepts intrinsischer Werte überhaupt in Frage zu stellen. Darüber hinaus aber wird weiters gezeigt, daß selbst dann, wenn man intrinsische Werte entsprechend der von Brentano und Moore vertretenen Auffassung als gegeben annimmt, diese Annahme keine ausreichende Grundlage für eine befriedigende ethische Theorie bereitstellt. (shrink)

Unter ‚Sinn im Leben‘ verstehe ich einen persönlichen, intrinsischen Wert für einen Akteur A. Die auf den ersten Blick widersprüchlich erscheinende doppelte Intuition, dass ein SL nur subjektiv aufgefasst werden kann, zugleich aber objektiv ‚gut‘ ist, wird von Susan Wolf als ein Argument zugunsten einer ‚hybriden‘ subjektiv-objektiven Theorie des SL vorgebracht. Sie bringt ihr Verständnis von SL auf die mittlerweile sehr bekannte Formel „meaning in life arises when subjective attraction meets objective attractiveness“. In meinem Beitrag verteidige ich eine Variante (...) eines in einem weiten Sinne ‚hybriden‘, d. h. subjektive und objektive Merkmale verbindenden Verständnisses von SL. Ich entwickle diese Variante, die als ‚schwach objektivistisch‘ bezeichnet werden könnte, im Anschluss an Harry G. Frankfurt. Ich zeige, dass Frankfurts Position, der nicht zuletzt von Wolf ein ‚Subjektivismus‘ vorgehalten wird, mit dem hier skizzierten ‚schwachen‘ Objektivitätsverständnis kompatibel ist. Die Stärke des hier vorgeschlagenen SL-Verständnisses liegt darin, dass eine inhaltliche Evaluierung vermieden, zugleich aber der genannten doppelten Intuition entsprochen wird. Eine ethische oder moralische Evaluierung der von einem Akteur zum SL auserkorenen Werte bleibt davon unberührt. (shrink)

Das Thema "menschliche Natur" hat eine lange Tradition in der Geschichte des philosophischen Denkens. Vor allem in Krisenzeiten und an Epochenschwellen stellte sich immer wieder Frage, was der Mensch "eigentlich" ist. Es sollte daher auch nicht überraschen, daß diese Frage auch in der Gegenwart wieder eine zunehmende Aufmerksamkeit findet. Nach langen Jahren eines nur zurückhaltenden Interesses findet die philosophische Anthropologie wieder stärkere Aufmerksamkeit. - Und doch handelt es dabei nicht nur um die Wiederaufnahme eines alten Themas. Die philosophische Beschäftigung mit (...) der menschlichen Natur hat im Zusammenhang mit den Fortschritten der modernen Bio- und Informationstechnologie eine unmittelbar praktische Relevanz bekommen, die sie in dieser Weise niemals zuvor hatte. Durch diese Fortschritte haben nämlich die Möglichkeiten technischer Eingriffe am Menschen eine Dimension erreicht, die nicht mehr nur einzelne seiner Merkmale manipulierbar macht, sondern seine "Natur" selbst. Dies gilt insbesondere im Hinblick auf die nicht mehr vollkommen utopische Idee eines genetischen Umbaus der gesamten Menschheit. Die Frage, die sich vor diesem Hintergrund stellt, ist die nach dem normativen Status der menschlichen Natur. Ist die psycho-physische Gestalt, in der wir den Menschen seit jeder kennen, ein Produkt zufälliger evolutionärer Prozesse und als solche moralisch neutral; oder ist sie intrinsisch wertvoll und daher schützenswert? Die in der Literatur geäußerten Meinungen zu dieser Frage gehen auseinander. Auf der einen Seite stehen diejenigen, die in der menschlichen Natur lediglich eine Tatsache sehen und keinen Grund erkennen können, weshalb diese Tatsache sakrosankt ein sollte. Unter bestimmten Voraussetzungen, so behaupten die Vertreter dieser Partei, kann es nicht nur legitim sein, die menschliche Natur zu verbessern, es kann sogar moralisch geboten sein. Auf der anderen Seite stößt genau diese Vorstellung einer technischen Rekonstruktion des Menschen auf Empörung und Abscheu. Abgesehen von allen Risiken, die mit einem solchen Herumbasteln verbunden sind, werde der Mensch auf diese Weise auf ein beliebiges "Stück Natur" reduziert; er werde zum totalen Objekt technischen Handelns und seiner Würde beraubt. Der menschlichen Natur müsse daher ein inhärenter Wert zugeschrieben werden, um den unverantwortlichen Plänen der Menschheitsverbesserer eine kategorische Grenze zu setzen. Doch was ist die "menschliche Natur"? Worin besteht sie und wie kann sie angesichts der unübersehbaren individuellen und kulturellen Vielfalt definiert werden? Dies ist die erste Frage, der die Beiträge des vorliegenden Bandes gewidmet sind. Und an sie schließt sich sogleich eine zweite an: Wenn es denn eine menschliche Natur gibt und wenn diese hinlänglich genau umrissen werden kann: Kann oder muß ihr dann ein moralischer Status zugeschrieben werden? Und welcher Art ist dieser Status: Ist er der menschlichen Natur inhärent oder leitet er sich von etwas anderem ab? -. (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)

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)

When fcc single crystals with high-symmetry crystal orientations are deformed to moderate strains by rolling, tension or channel die compression, long dislocation boundaries inclined to the extension axis form. Similarly, long dislocation boundaries are often found in grains embedded in polycrystals deformed in the same manner. These extended planar boundaries are characteristically - 30-40° from the extension direction and contain the transverse specimen axis. The objective of the present article is to demonstrate that EPBs formed during plane strain deformation are (...) parallel to equivalent slip planes, a pair of hypothetical slip systems used for analyses of the strain and crystal rotation components in place of the larger number of physical slip systems. The coincidence of EPBs and equivalent slip plane inclinations is shown to account for persistent observations of EPBs in the angle range - 30-40° from the rolling direction, in rolled single crystals of various initial orientations. The tendency of EPBs towards tilt or twist boundary character can also be rationalized on the basis of the equivalent slip system concept and consideration of the dislocation types available to be incorporated into EPBs. (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)

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)

Name der Zeitschrift: Das Mittelalter Jahrgang: 19 Heft: 2 Seiten: 407-419.

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)

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)

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)

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)

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)

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)

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)

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)

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)

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)

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...

Developments in Non-Invasive Prenatal Testing (NIPT) and cell-free fetal DNA analysis raise the possibility that antenatal services may soon be able to support couples in non-invasively testing for, and diagnosing, an unprecedented range of genetic disorders and traits coded within their unborn child’s genome. Inevitably, this has prompted debate within the bioethics literature about what screening options should be offered to couples for the purpose of reproductive choice. In relation to this problem, the European Society of Human Genetics (ESHG) and (...) American Society of Human Genetics (ASHG) tentatively recommend that any expansion of this type of screening, as facilitated by NIPT, should be limited to serious congenital and childhood disorders. In support of this recommendation, the ESHG and ASHG cite considerations of distribution justice. Notably, however, an account of justice in the organization and provision of this type of screening which might substantiate this recommendation has yet to be developed. This paper attempts to redress this oversight through an investigation of Norman Daniels’ theory of Just health: meeting health needs fairly. In line with this aim, the paper examines what special moral importance (for Just health) screening for the purpose of reproductive choice might have where concerning serious congenital and childhood disorders in particular. The paper concludes that screening for reproductive choice where concerning serious congenital and childhood disorders may be important for providing women with fair opportunity to protect their health (by either having or not having an affected child). (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)

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)

Introduction Tourette Syndrome is a childhood onset disorder characterized by vocal and motor tics and often remits spontaneously during adolescence. For treatment refractory patients, Deep Brain Stimulation may be considered. Methods and Results We discuss ethical problems encountered in two adolescent TS patients treated with DBS and systematically review the literature on the topic. Following surgery one patient experienced side effects without sufficient therapeutic effects and the stimulator was turned off. After a second series of behavioural treatment, he experienced a (...) tic reduction of more than 50%. The second patient went through a period of behavioural disturbances that interfered with optimal programming, but eventually experienced a 70% tic reduction. Sixteen DBS surgeries in adolescent TS patients have been reported, none of which pays attention to ethical aspects. Discussion Specific ethical issues arise in adolescent TS patients undergoing DBS relating both to clinical practice as well as to research. Attention should be paid to selecting patients fairly, thorough examination and weighing of risks and benefits, protecting the health of children and adolescents receiving DBS, special issues concerning patient’s autonomy, and the normative impact of quality of life. In research, registration of all TS cases in a central database covering a range of standardized information will facilitate further development of DBS for this indication. Conclusion Clinical practice should be accompanied by ongoing ethical reflection, preferably covering not only theoretical thought but providing also insights in the views and perspectives of those concerned, that is patients, family members and professionals. (shrink)

Background Massively parallel sequencing techniques, such as whole exome sequencing (WES) and whole genome sequencing (WGS), may reveal unsolicited findings (UFs) unrelated to the diagnostic aim. Such techniques are frequently used for diagnostic purposes in pediatric cases of developmental delay (DD). Yet policy guidelines for informed consent and return of UFs are not well equipped to address specific moral challenges that may arise in these children’s situations. Discussion In previous empirical studies conducted by our research group, we found that it (...) is sometimes uncertain how children with a DD will develop and whether they could come to possess capacities for autonomous decision-making in the future. Parents sometimes felt this brought them into a Catch-22 like situation when confronted with choices about UFs before undergoing WES in trio-analysis (both the parents’ and child’s DNA are sequenced). An important reason for choosing to consent to WES was to gain more insight into how their child might develop. However, to make responsible choices about receiving or declining knowledge of UFs, some idea of their child’s future development of autonomous capacities is needed. This undesirable Catch-22 situation was created by the specific policy configuration in which parents were required to make choices about UFs before being sequencing (trio-analysis). We argue that this finding is relevant for reconfiguring current policies for return of UFs for WES/WGS and propose guidelines that encompass two features. First, the informed consent process ought to be staged. Second, differing guidelines are required for withholding/disclosing a UF in cases of DD appropriate to the level of confidence there is about the child’s future developmental of autonomous capacities. Conclusion When combined with a dynamic consent procedure, these two features of our guidelines could help overcome significant moral challenges that present themselves in the situations of children undergoing genomic sequencing for clarifying a DD. (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)

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)

Genomic and neuro-scientific research into the causes and course of antisocial behaviour triggers bioethical debate. Often, these new developments are met with reservation, and possible drawbacks and negative side-effects are pointed out. This article reflects on these scientific developments and the bioethical debate by means of an exploration of the perspectives of one important stakeholder group: juveniles convicted of a serious crime who stay in a juvenile justice institution. The views of juveniles are particularly interesting, as possible applications of current (...) and future scientific findings are considered to be most effective if applied early in life. Based on their statements we come to the following provisional conclusions. Concerns about labelling and stigmatization are recognized and widely shared. Possible effects on one's identity are acknowledged too. Yet, a possible biological underpinning of one's antisocial behaviour is not considered to result in the development of a criminal identity. Nonetheless, psychopharmacological interventions are experienced as endangering one's current self. Concerns regarding the refusal of responsibility and the blaming of one's genes or brain can be put into perspective. Instead, participants emphasize the motive of own choice as underlying their criminal behaviour. Moreover, bioethical debate should pay attention to the role of parents of children at risk and the parent-child relationship in families at-risk. We argue that the short-term and long-term interests of children at risk, as well as their interests and those of society at large, may conflict. In order to deal appropriately with newly arising dilemmas, a normative framework needs to be developed. (shrink)

In the field of medically assisted reproduction (MAR), there is a growing emphasis on the importance of introducing new assisted reproductive technologies (ARTs) only after thorough preclinical safety research, including the use of animal models. At the same time, there is international support for the three R’s (replace, reduce, refine), and the European Union even aims at the full replacement of animals for research. The apparent tension between these two trends underlines the urgency of an explicit justification of the use (...) of animals for the development and preclinical testing of new ARTs. Considering that the use of animals remains necessary for specific forms of ART research and taking account of different views on the moral importance of helping people to have a genetically related child, we argue that, in principle, the importance of safety research as part of responsible innovation outweighs the limited infringement of animal wellbeing involved in ART research. (shrink)

How do professionals working in pre-implantation genetic diagnosis reflect upon their decision making with regard to ethical challenges arising in everyday practice? Two focus group discussions were held with staff of reproductive genetic clinics: one in Utrecht with PGD-professionals from Dutch PGD-centres and one in Prague with PGD-professionals working in centres in different European countries. Both meetings consisted of two parts, exploring participants’ views regarding treatment requests for conditions that may not fulfill traditional indications criteria for PGD, and treatment and (...) transfer requests involving welfare-of-the-child considerations. There was general support for the view that people who come for PGD will have their own good reasons to consider the condition they wish to avoid as serious. But whereas PGD-professionals in the international group tended to stress the applicants’ legal right to eventually have the treatment they want, participants in the Dutch group sketched a picture of shared decision-making, where professionals would go ahead with treatment in cases where they are able to understand the reasonableness of the request in the light of the couple’s reproductive history or family experience. In the international focus group there was little support for guidance stating that welfare-of-the child considerations should be taken into account. This was different in the Dutch focus group, where shared decision-making also had the role of reassuring professionals that applicants had adequately considered possible implications for the welfare of the child. (shrink)

Recent advancements in developmental biology enable the creation of embryo-like structures from human stem cells, which we refer to as human embryo-like structures (hELS). These structures provide promising tools to complement—and perhaps ultimately replace—the use of human embryos in clinical and fundamental research. But what if these hELS—when further improved—also have a claim to moral status? What would that imply for their research use? In this paper, we explore these questions in relation to the traditional answer as to why human (...) embryos should be given greater protection than other (non-)human cells: the so-called Argument from Potential (AfP). According to the AfP, human embryos deserve special moral status because they have the unique potential to develop into persons. While some take the development of hELS to challenge the very foundations of the AfP, the ongoing debate suggests that its dismissal would be premature. Since the AfP is a spectrum of views with different moral implications, it does not need to imply that research with human embryos or hELS that (may) have ‘active’ potential should be completely off-limits. However, the problem with determining active potential in hELS is that this depends on development passing through ‘potentiality switches’ about the precise coordinates of which we are still in the dark. As long as this epistemic uncertainty persists, extending embryo research regulations to research with specific types of hELS would amount to a form of regulative precaution that as such would require further justification. (shrink)