ZusammenfassungAm 1. Februar 2010 ist das Gendiagnostikgesetz in Kraft getreten. Die Debatte um einige Regelungsbereiche, wie beispielsweise das Neugeborenenscreening, reißt nicht ab. Ein Aspekt des Gesetzes ist im Rahmen der Debatte um die Präimplantationsdiagnostik in Deutschland unter neuen Vorzeichen zu diskutieren: Das – international bislang einzigartige – Verbot der pränatalen Diagnostik so genannter spätmanifestierender Erkrankungen, die erst nach der Vollendung des 18. Lebensjahres ausbrechen. In diesem Beitrag möchten wir Hinweise zur differenzierten Diskussion dieser in § 15 GenDG bestimmten Verbotsnorm liefern. (...) Obgleich Argumente, insbesondere das Recht auf Nichtwissen des geborenen Kindes, für ein solches Verbot sprechen, kommen wir aufgrund der medizinischen Sachlage und nach einer Analyse der Pro- und Kontraargumente aus ethischer und rechtlicher Sicht zu dem Schluss, dass ein generelles Verbot der pränatalen Diagnostik spätmanifestierender Erkrankungen im Sinne der Zielsetzung womöglich insuffizient ist sowie in der Begründung Inkonsistenzen zum bereits bestehenden Regelwerk aufweist, und lenken daher den Blick auf unter Umständen bessere Alternativen. (shrink)

This article gives an overview about the ethical dispute on preimplantation genetic diagnosis (PGD), its legal status and its practical usage in Europe. We provide a detailed description of the situation in Germany wherein prenatal diagnosis is routinely applied, but PGD is prohibited on the basis of the internationally unique embryo protection act (EPA) that was put into force in 1991. Both PGD and stem cell research were vigorously debated in Germany during the last four years. As (...) regards the PGD debate specifically, the voices of the ones directly affected were not adequately taken into consideration. We describe the predominant lines of argumentation in this debate and some essential results of our "bioethical field study" of opinions on and usage of PGD in Germany and their implications for the German legislation and ethical theory. (shrink)

According to the German Embryo Protection Act, PGD has been banned in Germany since 1990; one reason is the legislature’s avoiding to insert a revision clause regarding medical advance into the law. The ruling of the German Federal Court of Justice of July 2010 shows the problems resulting out of this approach and declares PGD to be permitted in certain cases. The article discusses the necessity for, as well as the problems of, an interdisciplinary dialogue in the field (...) of reproductive medicine. (shrink)

Genetic testing has familial implications. Counsellors find themselves in (moral) conflict between medical confidentiality (towards the patient) and a potential right or even duty to warn at-risk relatives. Legal regulations vary between countries. English literature about German law is scarce. We reviewed the literature of relevant legal cases, focussing on German law, according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. This article aims to familiarise counsellors with their responsibilities, compare the situation between countries (...) and point out legally unresolved areas.According to the German Genetic Diagnostics Act (Gendiagnostikgesetz) in case of an ‘avoidable or treatable’ genetic disorder, geneticists ought to confine themselves to the obligated advice to the patient. Whether a breach of the duty of confidentiality can be justified in exceptional cases by ‘necessity as justification’ for actively informing relatives at risk remains legally unclear. In case of a ‘neither avoidable nor treatable’ genetic disease, geneticists should also refrain from actively informing relatives as the justifiable state of emergency does not permit to break the duty of confidentiality. (shrink)

Mit der Vielzahl von Daten aus genetischen Untersuchungsverfahren wächst das Problem von „Zufallsbefunden“, d. h. von zufällig erhobenen Nebenbefunden, die mit der ursprünglichen Fragestellung nicht in Verbindung stehen und dennoch eine Bedeutung für Gesundheit und Reproduktionsverhalten der untersuchten Person selbst oder ihrer Anverwandten haben. In Ermangelung nationaler oder internationaler Richtlinien greifen die Autoren die aktuelle Diskussion um den Umgang mit genetischen Zufallsbefunden in Behandlungs- und Forschungskontext auf. Dabei nehmen sie auf die für Deutschland relevanten rechtlichen und ethischen Rahmenbedingungen Bezug. Nach (...) Gendiagnostikgesetz (GenDG) muss in Deutschland im Rahmen eines Behandlungsvertrages auf die Möglichkeit von Zufallsbefunden hingewiesen werden. Es ist Bestandteil der Aufklärung und Einwilligung, inwieweit Zufallsbefunde mitgeteilt werden, wobei das Recht auf Nichtwissen und der Schutz nicht-einwilligungsfähiger Personen berücksichtigt werden müssen. Im Forschungskontext greift das GenDG nicht, aber auch hier sollte über mögliche Zufallsbefunde aufgeklärt werden, wenngleich eine Rückmeldung nicht zwingend, aber bei Befunden mit hohem klinischen Nutzen ethisch geboten sein kann. Folgende Aspekte sind im Umgang mit Zufallsbefunden zu berücksichtigen: 1) Art und Umfang der Aufklärung und Einwilligung bei einer unüberschaubaren Zahl von möglichen Befunden. 2) Einordnung der klinischen Bedeutung einer genetischen Veränderung im Sinne von gesichertem, wahrscheinlichem, möglichem oder fraglichem/unbekanntem klinischen Nutzen. 3) Prozessierung des Informationsrückflusses für Gegenwart und Zukunft. 4) Ressourcenplanung im Hinblick auf die klinische Validierung, die Erläuterung von Befunden und den Transfer in die klinische Praxis. Im Umgang mit genetischen Zufallsbefunden besteht erheblicher empirisch-ethischer Forschungs- und politischer Regelungsbedarf. Zeitgleich ist es unabdingbar, die Wahrnehmung und das Verständnis der untersuchten Personen sowie die Grundhaltung gegenüber Zufallsbefunden im Rahmen von Studien zu beleuchten und entsprechende Bildungs- und Kommunikationswerkzeuge zu entwickeln. (shrink)

Preimplantation genetic diagnosis (PIGD) goes some way to meeting the clinical, psychological and ethical problems of antenatal testing. We should guard, however, against the assumption that PIGD is the answer to all our problems. It also presents some new problems and leaves some old problems untouched. This paper will provide an overview of how PIGD meets some of the old problems but will concentrate on two new challenges for ethics (and, indeed, law). First we look at whether we (...) should always suppose that it is wrong for a clinician to implant a genetically abnormal zygote. The second concern is particularly important in the UK. The Human Fertilisation and Embryology Act (1990) gives clinicians a statutory obligation to consider the interests of the future children they help to create using in vitro fertilisation (IVF) techniques. Does this mean that because PIGD is based on IVF techniques the balance of power for determining the best interests of the future child shifts from the mother to the clinician? (shrink)

Germany is an interesting case with respect to the governance of reprogenetics. It has a strong profile in the technosciences and high aims regarding the global bioeconomy, yet her regulation of human genetics, reproductive medicine and embryo research has for a long time been rather restrictive. German biopolitical exceptionalism has often been explained by reference to Catholicism and the legacy of the Nazi past. The Germans, so goes the common story, have learnt the lessons of history and translated them (...) into unconditional respect for human dignity, which in turn translates into unconditional protection of human life, including the human embryo, and the firm repudiation of any eugenic distinction between ‘life worth to live’ and ‘life not worth to live’. This, however, is not the whole story. Alongside deontological strictness we find another strand of governing body politics and reprogenetics in Germany, the rule-and-exception model, running from the mid-1970s abortion law via the 2002 Stem Cell Act to the 2011 regulation of pre-implantation genetic diagnosis. In contrast to the former, that strongly draws on Kant and his concept of human dignity, the latter bears resemblances to Carl Schmitt's concept of state of exception. The article will show that the rule-and-exception model builds the exception into the rule and transforms the meaning and mandate of ethics, namely from safeguarding ethical standards to deciding about the exception. Given that the exception has now tended to become the rule, the question is whether the lessons of history will govern German reprogenetics for much longer. (shrink)

To what extent should parents be able to choose the kind of child they have? The unfortunate phrase 'designer baby' has become familiar in debates surrounding reproduction. As a reference to current possibilities the term is misleading, but the phrase may indicate a societal concern of some kind about control and choice in the course of reproduction. Typically, people can choose whether to have a child. They may also have an interest in choosing, to some extent, the conditions under which (...) they do so, such as whether they have a child with a serious disability or disease. The purpose of this book is to explore the difficult and controversial question of the appropriate ethical and legal extent of reproductive autonomy in this context. The book examines ethical, legal and public policy issues in prenatal screening, prenatal diagnosis (PND), selective abortion and preimplantation genetic diagnosis (PGD). It explores the ethics of these selection practices and the ability of current ethical guidelines and legal mechanisms, including the law on selective abortion and wrongful birth, to deal with advances in genetic and other knowledge in these areas. Unlike in the United States, in England the relevant law is not inherently rights-based, but the impact of the Human Rights Act 1998 inevitably raises questions about the proper scope of reproductive autonomy in this context. The implications of the analysis are considered for the development of relevant law, public policy and ethical guidelines and will be of interest to academics in medical law and ethics, health professionals, lawyers, those working on public policy and students with an interest in these issues. (shrink)

This article aims at demonstrating that the theory of potency developed by Giorgio Agamben lacks a fundamental aspect. The Italian philosopher has pointed out the amphibious nature of potency. However, his analysis does not cover the act, thus failing to observe its amphibious nature. We will demonstrate that this insufficiency lies at the root of several problems –whether ontological, political, aesthetic, ethical, etc.– found in Agamben’s thinking.

Can the Euthydemus illuminate the philosophical significance of sophistry? In answering this question, I ask why the most direct and sustained confrontations between Socrates and the two brothers should all center on time and the soul. The Euthydemus, I argue, is a not primarily a polemic against eristic manipulation of language, but a diagnosis of the soul’s ambiguous unity. It shows that sophistic speech emerges from the soul’s way of relating to its own temporal character and to logos. Stated (...) differently, a central theme of this dialogue is one which, we are repeatedly told, the Greeks had not yet thematized--the nature of interiority. (shrink)

Being a pacifist who refrains from lethal violence is considered a praiseworthy commitment but not morally obligatory. One reason for denying that pacifism is morally obligatory is the high cost that would be implied for agents under attack, who cannot defend their own lives. Thus, pacifists are usually seen as lambs between lions and, therefore, pacifism is seen as morally over-demanding. In this paper, I intend to clarify the over-demandingness objection and to show its limits against pacifism. First, I argue (...) that the cost of an act is neither a necessary nor sufficient condition to determine its obligatory nature. Second, arguing from an analogy to Batman, I maintain that there is a plausible moral obligation to never use lethal violence against another human being that arises from adopting a specific social role, namely, the leadership of a pacifist movement. (shrink)

This handbook explores the ways biomedicine and pop culture interact while simultaneously introducing the reader with the tools and ideas behind this new field of enquiry. From comic books to health professionals, from the arts to genetics, from sci-fi to medical education, from TV series to ethics, it offers different entry points to an exciting and central aspect of contemporary culture: how and what we learn about scientific knowledge and its representation in pop culture. Divided into three sections the handbook (...) surveys the basics, the micro-, and the macroaspects of this interaction between specialized knowledge and cultural production: After the introduction of basic concepts of and approaches to the topic from a variety of disciplines, the respective theories and methods are applied in specific case studies. The final section is concerned with larger social and historical trends of the use of biomedical knowledge in popular culture. Presenting over twenty-five original articles from international scholars with different disciplinary backgrounds, this handbook introduces the topic of pop culture and biomedicine to both new and mature researchers alike. The articles, all complete with a rich source of further references, are aimed at being a sincere entry point to researchers and academic educators interested in this somewhat unexplored field of culture and biomedicine. (shrink)

Imagine a world where everyone is healthy, intelligent, long living and happy. Intuitively this seems wonderful albeit unrealistic. However, recent scienti c breakthroughs in genetic engineering, namely CRISPR/Cas bring the question into public discourse, how the genetic enhancement of humans should be evaluated morally. In 2001, when preimplantation genetic diagnosis (PGD) and in vitro fertilisation (IVF), enabled parents to select between multiple embryos, Julian Savulescu introduced the principle of procreative bene cence (PPB), stating that parents have (...) the obligations to choose the child that is expected to have the best life. In this paper I argue that accepting the PPB and the consequentialist principle (CP) that two acts with the same consequences are morally on par, commits one to accepting the parental obligation of genetically enhancing one's children. (shrink)

This writing is part of a body of reflections about the ‘researching programs’ and ‘categories’ used in philosophy, philology and linguistics to explain human language. Within this framework, several categories like Modell, Vorbild and Paradigm are covered from a descriptive sense according to the ‘Wittgenstein’ research program. From Russell’s conception of language, there is a treatment to the prescriptive aspects of Plato’s ideas and their relation to universals. Then, the universal category in the predicament act and the denotation act are (...) linked proposing their relation with notions such as ‘knowledge’ and ‘truth’. Therefore some concerns, shared by Russell and Wittgenstein about a philosophical grammar, are pointed out for the expression of human understanding. (shrink)

Introducción: La asignatura Metodología de la Investigación Cualitativa en Salud se imparte a los estudiantes de tercer año de la Licenciatura en Enfermería en la modalidad de clase teórico-práctica como forma organizativa de la docencia. Ello recalca la importancia del trabajo independiente. Las insuficiencias con relación a éste inciden directamente en la asimilación y apropiación de los conocimientos de la asignatura. Objetivo: Elaborar una estrategia didáctica que contribuya al desarrollo del trabajo independiente correspondiente a la asignatura Metodología de la Investigación (...) Cualitativa en Salud.Material y métodos: Se realizó una investigación de desarrollo, encaminada a perfeccionar el proceso docente educativo en la Facultad de Enfermería, de la Universidad de Ciencias Médicas de Camagüey, durante el curso escolar 2011-2012. Para el diagnóstico inicial se procedió al análisis de documentos: los planes de estudio y el programa de la asignatura. También se aplicaron encuestas a un grupo de estudiantes y al colectivo de profesores que imparten la asignatura. Una vez elaborada la estrategia se evaluó por criterio de expertos. Resultados y discusión: La estrategia pone a disposición de la comunidad académica un software educativo que relaciona los contenidos de la asignatura, lo que permitirá al estudiantado realizar las tareas docentes que se orientan en clases así como asimilar, consolidar y sistematizar los conocimientos con mayor facilidad. Introduction: The subject Methodology of Qualitative Research in Health is taught to the students of the third year of the Bachelor in nursing in the form of theoretical and practical lesson as organizational way of teaching. This underscores the importance of self-employment. The shortcomings in relation to this affect directly the assimilation and appropriation of knowledge in the subject. Objective: To develop a teaching strategy that contributes to the development of self-employ ment for the subject Methodology of Qualitative Research in Health. Material aids and methods: A development research was made which aims at improving the educational teaching process in the Faculty of nursing from the University of Medical Sciences in Camagüey, during the 2011-2012 course. For an initial diagnosis the analyses of documents was made: the curriculum and the program of the course. Surveys were also applied to a group of students and the staff of teachers of the subject. Once the strategy was made it was evaluated through criteria of experts. Results and discussion: Strategy makes available to the academic community educational software that relates to the contents of the course, allowing students to perform teaching tasks which are assigned in lessons as well as assimilate, consolidate and systematize the knowledge easiest. (shrink)

Society has historically not taken a benign view of genetic disease. The laws permitting sterilization of the mentally re tarded~ and those proscribing consanguineous marriages are but two examples. Indeed as far back as the 5th-10th centuries, B.C.E., consanguineous unions were outlawed (Leviticus XVIII, 6). Case law has traditionally tended toward the conservative. It is reactive rather than directive, exerting its influence only after an individual or group has sustained injury and brought suit. In contrast, state legislatures have not (...) been inhibited in enacting statutes. Many of their products can be characterized as hasty, unnecessary, ill-conceived, and based on the heart rather than the head. Moreover the lack of expert consultation sought has also been remarkable. One state legislature, for example, has advocated immunization for sickle cell anemia! Many others have enacted laws for the screening of inborn errors of metabolism, e.g., phenylketon uria, but have poorly defined the lines of responsibility to secure compliance. A spate of specific disease-related bills has emerged in the u.S. Congress, each seeking recognition and appropriations. Sickle cell anemia, hemophilia, Cooley's anemia and Tay-Sachs disease have been among the front-runners for support. Finally, in 1975, Congress has begun to examine an omnibus bill concerning all forms of genetic disease. The bill, termed the National Genetic Diseases Act is, however, still far from being enacted. (shrink)

This chapter discusses the Ganser syndrome and gives a brief account on its clinical features. A significant number of clinicians in Europe continued accepting Ganser's basic postulates that the patients showed significant memory disorder and 'answers towards the question' within the framework of traumatic or reactive hysteria. In elderly patients, Ganser type symptoms may be indicative of the onset of dementia. Ganser syndrome raises the question of the interaction between concepts, ideology and clinical observation. The clinician must be aware that (...) a misdiagnosed case of Ganser-type hysteria may result in lawsuits, unnecessary surgical interventions, inappropriate use of minor and major tranquillizers, and social consequences that may be destabilizing for the patient and family. Positive results in the organic investigation should lead to a firm diagnosis and disconfirmation of Ganser syndrome. Persistent negative results and dramatic improvement should tend to confirm the diagnosis. (shrink)

Rather than occurring abstractly (autonomously), ethical growth occurs in interpersonal relationships (IRs). It requires optimally functioning cognitive processes [attention, working memory (WM), episodic/autobiographical memory (AM), inhibition, flexibility, among others], emotional processes (physical contact, motivation, and empathy), processes surrounding ethical, intimacy, and identity issues, and other psychological processes (self-knowledge, integration, and the capacity for agency). Without intending to be reductionist, we believe that these aspects are essential for optimally engaging in IRs and for the personal constitution. While they are all integrated (...) into our daily life, in research and academic work, it is hard to see how they are integrated. Thus, we need better theoretical frameworks for studying them. That study and integration thereof are undertaken differently depending on different views of what it means to live as a human being. We rely on neuroscientific data to support the chosen theory to offer knowledge to understand human beings and interpersonal relational growth. We should of course note that to describe what makes up the uniqueness of being, acting, and growing as a human person involves something much more profound which requires too, a methodology that opens the way for a theory of the person that responds to the concerns of philosophy and philosophical anthropology from many disciplines and methods (Orón Semper, 2015;Polo, 2015), but this is outside the scope of this study. With these in mind, this article aims to introduce a new explanatory framework, called the Interprocessual-self (IPS), for the neuroscientific findings that allow for a holistic consideration of the previously mentioned processes. Contributing to the knowledge of personal growth and avoiding a reductionist view, we first offer a general description of the research that supports the interrelation between personal virtue in IRs and relevant cognitive, emotional, and ethic-moral processes. This reveals how relationships allow people to relate ethically and grow as persons. We include conceptualizations and descriptions of their neural bases. Secondly, with the IPS model, we explore neuroscientific findings regarding self-knowledge, integration, and agency, all psychological processes that stimulate inner exploration of the self concerning the other. We find that these fundamental conditions can be understood from IPS theory. Finally, we explore situations that involve the integration of two levels, namely the interpersonal one and the social contexts of relationships. (shrink)

In this paper I present an argument in favour of a parental duty to use preimplantation genetic diagnosis (PGD). I argue that if embryos created in vitro were able to decide for themselves in a rational manner, they would sometimes choose PGD as a method of selection. Couples, therefore, should respect their hypothetical choices on a principle similar to that of patient autonomy. My thesis shows that no matter which moral doctrine couples subscribe to, they ought to conduct (...) the PGD procedure in the situations when it is impossible to implant all of the created embryos and if there is a significant risk for giving birth to a child with a serious condition. (shrink)

Preimplantation genetic diagnosis (PID) is often seen as an improvement upon prenatal testing. I argue that PID may exacerbate the eugenic features of prenatal testing and make possible an expanded form of free-market eugenics. The current practice of prenatal testing is eugenic in that its aim is to reduce the numbers of people with genetic disorders. Due to social pressures and eugenic attitudes held by clinical geneticists in most countries, it results in eugenic outcomes even though no (...) state coercion is involved. I argue that technological advances may soon make PID widely accessible. Because abortion is not involved, and multiple embryos are available, PID is radically more effective as a tool of genetic selection. It will also make possible selection on the basis of non-pathological characteristics, leading, potentially, to a full-blown free-market eugenics. For these reasons, I argue that PID should be strictly regulated. (shrink)

In this paper I argue that the account of deliberative democracy advanced by Amy Gutmann and Dennis Thompson (1996, 2004) is a useful normative theory that can help enhance our deliberations about public policy in morally pluralistic societies. More specifically, I illustrate how the prescriptions of deliberative democracy can be applied to the issue of regulating non-medical uses of pre-implantation genetic diagnosis (PGD), such as gender selection. Deliberative democracy does not aim to win a philosophical debate among rival (...) first-order theories, such as libertarianism, egalitarianism or feminism. Rather, it advances a second-order analysis that strives to help us determine what would constitute a reasonable balance between the conflicting fundamental values that arise in the context of regulating PGD. I outline a theoretical model (called the Reasonable Genetic Intervention Model) that brings these issues to the fore. Such a model incorporates the concern for both procedural and substantive principles; and it does so in way that takes provisionality seriously. (shrink)

Objective: To analyse legislation and medical professionals’ position concerning the doctor’s role in assisted reproduction techniques in Italy, and to discuss the implications for physicians of preimplantation genetic diagnosis .Background: Until recently a strict interpretation of the assisted reproduction law and the guidelines subsequently issued, lead to denying infertile couples affected by genetic diseases the right to resort to PGD. In October 2006 the Constitutional Court ruled regarding the question of the constitutional legitimacy of the prohibition of (...) PGD.Discussion: The Constitutional Court declared the manifest inadmissibility of the question of the constitutional legitimacy of article 13 of law 40/2004. The debate has become very animated since the ruling. After the negative sentence of the Constitutional Court, three further sentences recognised the right of couples to obtain PGD, representing a hard blow to law 40/2004 and to the ministerial guidelines; a further confirmation of the untenability of a law that violates fundamental principles such as the right to healthcare for women and the unborn child, the right to responsible motherhood and to informed consent.Conclusion: It seems that in Italy the legislative inadequacy for medically assisted procreation is reprieved by the courageous decisions of the judges, which refer to the values of the Italian Constitution, in defence of the fundamental rights of the citizens. (shrink)

The Human Fertilisation and Embryology Authority have recently granted a licence to perform preimplanation genetic diagnosis (PGD) for the homozygous form of familial hypercholesterolaemia (FH), explicitly excluding its use for the heterozygous form. The grounds for such decisions centre on how serious a condition is thought to be as well as on the availability of effective treatment, and decisions are made on a case-by-case basis. The case for licensing homozygous FH is discussed and compared with other cases, and (...) the case for making a distinction between PGD for homozygous and heterozygous FH is also examined. Testing for homozygous FH raises difficult issues of non-disclosure of results for heterozygous FH. Fears that this decision may represent a ‘slippery slope’ to more widespread testing are argued to be overstated. (shrink)

Giam, Patrick This article seeks to explore some further ethical and legal issues surrounding the practice of preimplantation genetic diagnosis which was the subject of a 2009 article for BRN. After briefly reviewing the state of regulation of PGD in Australia, focusing mainly on the national Guidelines developed by the National Health and Medical Research Council, I proceed to consider the ethical problems with PGD from the Catholic and natural law position that the embryo is a human person (...) with inherent dignity and the right to life, which forms the basis for revisiting the conclusions reached in my previous article on the proper response to the regulation of such technology. (shrink)

Preimplantation genetic diagnosis (PGD) raises serious moral questions concerning the parent-child relationship. Good parents accept their children unconditionally: they do not reject/attack them because they do not have the features they want. There is nothing wrong with treating a child as someone who can help promote some other worthwhile end, providing the child is also respected as an end in him or herself. However, if the child's presence is not valued in itself, regardless of any further benefits it (...) brings, the child is not being treated as an end in the full sense of the term. In this paper, I argue that these principles apply to human embryos, as well as to born human offspring: the human moral subject is a bodily being, whose interests and rights begin with the onset of his or her bodily life. The rights of the living, bodily human individual include a right not to be attacked/abandoned because of his or her genetic profile. PGD is harmful to the parent-child relationship, and we give mixed messages to parents by expecting them to show unconditional commitment to offspring after birth, while inviting them to take a very different approach at the prenatal stage. (shrink)

Should parents aim to make their children as normal as possible to increase their chances to “fit in”? Are neurological and mental health conditions a part of children’s identity and if so, should parents aim to remove or treat these? Should they aim to instill self-control in their children? Should prospective parents take steps to insure that, of all the children they could have, they choose the ones with the best likely start in life? -/- This volume explores all of (...) these questions and more. Against the background of recent findings and expected advances in neuroscience and genetics, the extent and limits of parental responsibility are increasingly unclear. Awareness of the effects of parental choices on children’s wellbeing, as well as evolving norms about the moral status of children, have further increased expectations from (prospective) parents to take up and act on their changing responsibilities. -/- The contributors discuss conceptual issues such as the meaning and sources of moral responsibility, normality, treatment, and identity. They also explore more practical issues such as how responsibility for children is practiced in Yoruba culture in Nigeria or how parents and health professionals in Belgium perceive the dilemmas generated by prenatal diagnosis. (shrink)

The prelims comprise: Introduction Better Alternative Than Abortion? The Morality of Prenatal Diagnosis Prenatal Genetic Testing as Prevention The Line‐drawing Question Conclusion Note.

While pre-implantation genetic diagnosis is available and legal in Malaysia, there is an ongoing controversy debate about its use. There are few studies available on individuals’ attitudes toward PGD, particularly among those who have a genetic disease, or whose children have a genetic disease. To the best of our knowledge, this is, in fact, the first study of its kind in Malaysia. We conducted in-depth interviews, using semi-structured questionnaires, with seven selected potential PGD users regarding their (...) knowledge, attitudes and decisions relating to the use PGD. The criteria for selecting potential PGD users were that they or their children had a genetic disease, and they desired to have another child who would be free of genetic disease. All participants had heard of PGD and five of them were considering its use. The participants’ attitudes toward PGD were based on several different considerations that were influenced by various factors. These included: the benefit-risk balance of PGD, personal experiences of having a genetic disease, religious beliefs, personal values and cost. The study’s findings suggest that the selected Malaysian participants, as potential PGD users, were supportive but cautious regarding the use of PGD for medical purposes, particularly in relation to others whose experiences were similar. More broadly, the paper highlights the link between the participants’ personal experiences and their beliefs regarding the appropriateness, for others, of individual decision-making on PGD, which has not been revealed by previous studies. (shrink)

In its recent statement 'Sex Selection and Preimplantation Genetic Diagnosis', the Ethics Committee of the American Society of Reproductive Medicine concluded that preimplantation genetic diagnosis for sex selection for non-medical reasons should be discouraged because it poses a risk of unwarranted gender bias, social harm, and results in the diversion of medical resources from genuine medical need. We critically examine the arguments presented against sex selection using preimplantation genetic diagnosis. We argue that sex selection (...) should be available, at least within privately funded health care. (shrink)

New uses of preimplantation genetic diagnosis to screen embryos prior to transfer raise ethical, legal, and policy issues that deserve close attention. Extensions for medical purposes, such as to identify susceptibility genes, late onset disease, and human leukocyte antigen matching, are usually ethically acceptable. Whether embryo screening for gender, perfect pitch, or other non-medical characteristics are also acceptable depends upon the parental needs served and the harm posed to embryos, children, and society. Speculations about potential future uses of (...) PGD should not prevent otherwise acceptable current uses of PGD. (shrink)

The identification and avoidance of disease susceptibility in embryos is the most common goal of preimplantation genetic diagnosis (PGD). Most jurisdictions that accept but regulate the availability of PGD restrict it to what are characterized as ‘serious’ conditions. Line-drawing around seriousness is not determined solely by the identification of a genetic mutation. Other factors seen to be relevant include: impact on health or severity of symptoms; degree of penetrance (probability of genotype being expressed as a genetic (...) disorder); potential for therapy; rate of progression; heritability; and age of onset. In the original applications of PGD, most, if not all of these factors were seen as necessary but none was seen as sufficient for determining whether a genetic condition was labelled ‘serious’. This, however, is changing as impact on health or severity of symptoms is coming to eclipse the other considerations. This paper investigates how age of onset (primarily in the context of the United Kingdom (UK)) has become considerably less significant as a criterion for determining ethically acceptable applications of PGD. Having moved off the threshold of permitting PGD testing for only fatal (or seriously debilitating), early-onset diseases, I will investigate reasons for why age of onset will not do any work to discriminate between which adult-onset diseases should be considered serious or not. First I will explain the rationale underpinning age of onset as a factor to be weighed in making determinations of seriousness. Next I will challenge the view that later-onset conditions are less serious for being later than earlier-onset conditions. The final section of the paper will discuss some of the broader disability concerns at stake in limiting access to PGD based upon determinations of the ‘seriousness’ of genetic conditions. Instead of advocating a return to limiting PGD to only early-onset conditions, I conclude that the whole enterprise of trying to draw lines of what is to count as a ‘serious’ condition is itself problematic and in certain ways morally misleading. (shrink)

These words were written by ethicist Jonathan Glover in his paper “Future People, Disability and Screening” in 1992. Whereas screening and choosing for a disability remained a theoretical possibility 16 years ago, it has now become reality. In 2006, Susannah Baruch and colleagues at John Hopkins University published a survey of 190 American preimplantation genetic diagnosis clinics, and found that 3% reported having the intentional use of PGD “to select an embryo for the presence of a disability.” Even (...) before, in 2002, a controversy was generated by the case of Candace A. McCullough and Sharon M. Duchesneau, a lesbian and deaf couple from Maryland who set out to have a deaf child by intentionally soliciting a deaf sperm donor. (shrink)

This article argues in support of the proposition that “A Personality Disorder May Nullify Responsibility for a Criminal Act.” Building upon research in categorical and dimensional controversies in diagnosis, neurocognitive science and the behavioral genetics of mental disorders, and difficulties in differential diagnosis and co-morbidity with personality disorders, this article holds that a per se rule barring personality diagnosis as a basis for a defense of legal insanity is scientifically and conceptually indefensible. Rather, focus should be upon (...) the severity and impact in specific cases of any legally relevant functional deficits arising from a mental disorder (including personality disorders). Failure to do so risks potentially misleading “battles of the experts” about a defendant's diagnosis in criminal responsibility defenses and improper usurpation of the role of the legal finder of fact as mental health expert witnesses are inserted as gatekeepers indefensibly based upon diagnosis. Implications for practice and public policy are considered, including a “modest proposal” for post-trial management of defendants found not guilty by reason of insanity on the basis of functional deficits arising from personality disorder. (shrink)

We report here on recent developments in Israel on the issue of sex selection for nonmedical reasons by preimplantation genetic diagnosis. Sex selection for medical reasons is generally viewed as uncontroversial and legal in European and American law. Its use for nonmedical reasons is generally illegal in European countries. In the United States, it is not illegal, although in the opinion of the Ethics Committee of the American Society for Reproductive Medicine, it is problematic. This position is undergoing (...) reconsideration, albeit in a limited way. (shrink)

Successful preimplantation genetic diagnosis to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo and reduces the chance that (...) the parents will be faced with a difficult decision of whether to terminate the pregnancy. More controversial have been PGD to select the sex of the child-to-be for “family balancing”, PGD for mere susceptibility to disease and for late-onset disorders such as Alzheimer diseas, and most controversially, PGD to create a donor child who is Human Leukocyte Antigen (HLA-matched with a preexisting sibling in need of stem cell transplant. (shrink)

Most of us want to have children. We want them to be healthy and have a good start in life. One way to achieve this goal is to use preimplantation genetic diagnosis . PGD enables people engaged in the process of in vitro fertilisation to acquire information about the genetic constitution of an early embryo. On the basis of this information, a decision can be made to transfer embryos without genetic defects to the uterus and terminate (...) those with genetic defects.1However, is it morally acceptable to use PGD to reduce the probability of children with severe genetic diseases being born? Is the current routine use of PGD in public healthcare services to select against severe genetic diseases like anencephaly, spina bifida, cystic fibrosis and Down’s syndrome morally acceptable?These are complex questions involving a range of difficult ethical issues—for instance, critical discussions about the morality of embryo research and embryo termination.2 They also involve awkward conceptual issues concerning such matters as the meaning of words such as “disability”3 and “severe” in “severe genetic diseases”,4 which will not be discussed here.In this paper I examine an argument which aims to show that efforts to prevent the birth of severely disabled children using PGD are morally unacceptable. Essentially, this argument appeals to our concern for disabled people and the belief that PGD, through a slippery slope process, will have bad consequences for them. I conclude that the argument is problematic for a number of reasons. But before I examine the argument itself, it will be helpful to separate two types of slippery slope argument since these involve different kinds of reasoning.TWO TYPES OF ARGUMENTMany of the arguments against PGD point to the bad consequences it can be expected to have for disabled people. Central to all these …. (shrink)

Successful preimplantation genetic diagnosis to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo and reduces the chance that (...) the parents will be faced with a difficult decision of whether to terminate the pregnancy. More controversial have been PGD to select the sex of the child-to-be for “family balancing”, PGD for mere susceptibility to disease and for late-onset disorders such as Alzheimer diseas, and most controversially, PGD to create a donor child who is Human Leukocyte Antigen (HLA-matched with a preexisting sibling in need of stem cell transplant. (shrink)

Abstract:This paper considers the relevance of the concept of “eugenics,”—a term associated with some of the most egregious crimes of the twentieth century—to the possibility of editing human genomes. The author identifies some uses of gene editing as eugenics but proposes that this identification does not suffice to condemn them. He proposes that we should distinguish between “morally wrong” practices, which should be condemned, and “morally problematic” practices that call for solutions, and he suggests that eugenic uses of gene editing (...) fall into this latter category. Although when we choose the characteristics of future people we are engaging in morally dangerous acts, some interventions in human heredity should nevertheless be acknowledged as morally good. These morally good eugenic interventions include some uses of preimplantation genetic diagnosis. The author argues that we should think about eugenic interventions in the same way that we think about morally problematic interventions in public health. When we recognize some uses of gene editing as eugenics, we make the dangers of selecting or modifying human genetic material explicit. (shrink)

Culture creates the context within which individuals experience life and comprehend moral meaning of illness, suffering and death. The ways the patient, family and the physician communicate and make decisions in the end-of-life care are profoundly influenced by culture. What is considered as right or wrong in the healthcare setting may depend on the socio-cultural context. The present article is intended to delve into the cross-cultural perspectives in ethical decision making in the end-of-life scenario. We attempt to address the dynamics (...) of the roles of patient, family and physician therein across two countries from East and West, namely, India and Germany. In India, where illness is more a shared family affair than an individual incident, a physician is likely to respect the family’s wishes and may withhold the ‹naked truth’ about the diagnosis of a fatal disease to the patient. In Germany, a physician is legally required to inform the patient about the disease. In India, advance directive being virtually non-existent, the family acts as the locus of the decision-making process, taking into account the economic cost of available medical care. In Germany, advance directive is regarded as mandatory and healthcare is covered by insurance. Family and the physician appear to play larger roles in ethical decision making for patients in India than for those in Germany, who place greater emphasis on autonomy of the individual patient. Our study explicates how culture matters in ethical decision-making and why the bioethical discourse is necessary in the concrete realities of the socio-cultural context. To explore the possibility of finding a common ground of morality across different cultures while acknowledging and respecting cultural diversity, thus remains a formidable challenge for the bioethicists. (shrink)

CRISPR is widely considered to be a disruptive technology. However, when it comes to the most controversial topic, germline genome editing (GGE), there is no consensus on whether this technology has any substantial advantages over existing procedures such as embryo selection after in vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD). Answering this question, however, is crucial for evaluating whether the pursuit of further research and development on GGE is justified. This paper explores the question from both a (...) clinical and a moral viewpoint, namely whether GGE has any advantages over existing technologies of selective reproduction and whether GGE could complement or even replace them. In a first step, I review an argument of extended applicability. The paper confirms that there are some scenarios in which only germline intervention allows couples to have (biologically related) healthy offspring, because selection will not avoid disease. In a second step, I examine possible moral arguments in favour of genetic modification, namely that GGE could save some embryos and that GGE would provide certain benefits for a future person that PGD does not. Both arguments for GGE have limitations. With regard to the extended applicability of GGE, however, a weak case in favour of GGE should still be made. (shrink)

Objective : Pre-implantation genetic diagnosis (PGD) has been utilized by assisted reproductive technology (ART) to genetically screen embryos before placement in the uterus. However, many objections have been raised against the genetic screening of embryos, giving the practice an uncertain ethical, legal, and social status. Our aim was, therefore, to survey the possible presence and compliance to any legislation for PGD in the existing 60 in vitro fertilization (IVF) centres in the Gulf Cooperative Council (GCC) countries as (...) well as the availability of such a technological service. Methods : The study was performed in the department of biochemistry at King Faisal University between the periods Mar 2006 to Nov 2007. A questionnaire, in the form of a table, was sent to responsible persons of all 60 IVF centres and health authorities in the GCC countries. The collected data about the regulations and guidelines for the PGD program was analyzed using SPSS software package version 12.0 and the level of significance was set at P Results: 18 respondents, 16 IVF centres and 2 health authorities (26.87% of total) participated in the survey. The PGD techniques, mainly FISH analyses, were practiced in three centres in Saudi Arabia and one centre in the UAE. The major provider of PGD was King Faisal Specialist Hospital and Research Centre in Riyadh where more than 300 PGD tests had been performed. Whilst some regulations and guidelines have been introduced to IVF centres in all GCC countries, their implementations were left to the discretion of the treating centre. Conclusions : PGD services in the GCC countries were under-utilized due to the high cost of tests, the sophisticated technology involved and the poor returns of the investment. As a result of some deficiencies in the legislations which regulated PGD, the medical teams involved often faced difficulties on what rights to exercise in various PGD cases. (shrink)

Successful preimplantation genetic diagnosis (PGD) to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization (IVF) to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo and reduces the (...) chance that the parents will be faced with a difficult decision of whether to terminate the pregnancy. More controversial have been PGD to select the sex of the child-to-be for “family balancing” (rather than to avoid a sex-linked disorder), PGD for mere susceptibility to disease and for late-onset disorders such as Alzheimer diseas, and most controversially, PGD to create a donor child who is Human Leukocyte Antigen (HLA-matched with a preexisting sibling in need of stem cell transplant. (shrink)

Developments in biotechnology present difficult social and ethical challenges that need to be resolved by regulators among others. One crucial problem for regulators of new technologies is to ensure that regulation is both clear and sufficiently flexible to respond to new developments. This is particularly difficult to achieve in contentious fields such as medical biotechnology. In the European Union there is a divergence in the solutions to this problem which has lead to different regulatory frameworks for medical biotechnology. This paper (...) compares and contrasts the British and Dutch regulatory frameworks for the selection of embryos by preimplantation genetic diagnosis as an example of the regulation of medical biotechnology. Some of the outcomes of the regulatory choices and possible reasons behind the divergent frameworks are discussed, such as the ethical outlooks and political systems in these countries. (shrink)

In my previous paper I argued that if in vitro fertilization (IVF) is legal and practiced there is no moral ground to object to legalization of preimplantation genetic diagnosis (PGD). My opponent raises an objection that my paper “fails to address the ethical argumentation of one key opponent of IVF – the Catholic Church”. In this reply I show that her/his thesis that embryos created during IVF are in ‘ethical limbo’ and “fall outside the moral universe of Christian (...) ethics” does not undermine my argumentation and masks the serious problem Catholics have with the moral status of early embryos. (shrink)