We have a reason to use information which is available about such genes in our reproductive decision-making; (3) couples should selec.

Human embryos produced in labs since the 1970s have generated layers of uncertainty for law and policy: ontological, moral, and administrative. Ontologically, these lab-made entities fall into a gray zone between life and not-yet-life. Should in vitro embryos be treated as inanimate matter, like abandoned postsurgical tissue, or as private property? Morally, should they exist largely outside of state control in the zone of free reproductive choice or should they be regarded as autonomous human lives and thus entitled to constitutional (...) protection like full-fledged citizens? Administratively, if they deserve protection, what institutional and policy mechanisms are best suited to carrying out the necessary oversight? Using a method termed comparative problematization, this article traces divergent answers to these questions produced in three countries—the United States, United Kingdom, and Germany—across the last twenty-five years. Comparison reveals distinct bioconstitutional foundations that give rise to systematically different understandings of each state’s responsibilities toward human life and hence its particular treatment of claims on behalf of embryonic lives. (shrink)

Definition of the problem The creation and selection of children as tissue donors is ethically controversial. Critics often appeal to Kant’s Formula of Humanity, i.e. the requirement that people be treated not merely as means but as ends in themselves. As many defenders of the procedure point out, these appeals usually do not explain the sense of the requirement and hence remain obscure. Arguments This article proposes an interpretation of Kant’s principle, and it proposes that two different instrumental stances be (...) distinguished. I argue that the creation of “saviour children” is a form of instrumentalization that I dub “preemptive instrumentalization” and that it is categorically different from earlier forms of instrumental attitudes concerning human reproduction. Conclusion Critics are wrong to claim that Kant’s principle is either compatible with the selection of saviour siblings or too vague to serve as an ethical principle. (shrink)

"In these essays, health care professionals, scholars, and members of the disability community debate the implications of prenatal testing for people with disabilitties and for parent-child relationships generally."--Cover.

The overarching aim of this book is to illuminate a broad array of issues connected with reproduction and ethics through the lens of moral philosophy. With novel frameworks for understanding prenatal moral status and human identity, DeGrazia sheds new light on the ethics of abortion and embryo research, genetic enhancement and prenatal genetic interventions, procreation and parenting, and decisions that affect the quality of life of future generations.

Die künstliche Zeugung und Selektion von Nachwuchs als Spender von Gewebe für Dritte ist ethisch umstritten. Kritiker des Verfahrens berufen sich oft auf Kants Forderung, Personen seien jederzeit auch als Zwecke an sich selbst zu behandeln. Diese Kritik wird aber oft vorgebracht, ohne dass erläutert würde, was es heißt, Personen als Zwecke an sich selbst zu behandeln. Befürworter des Verfahrens weisen die Kritik daher als dunkel zurück oder deuten sie so, dass sie das Verfahren zulässt. Dieser Artikel erläutert den Kern (...) der Zweckformel (im Zusammenhang mit anderen Formulierungen des kategorischen Imperativs). Dieser Deutung zufolge ist die Zeugung von Retterkindern in der Tat eine Form der Instrumentalisierung, die ich präemptive Instrumentalisierung nenne. Der Unterschied zwischen dieser Form der Instrumentalisierung und anderen Formen instrumentell motivierter Nachwuchsplanung wird dargestellt. (shrink)

Modern repro-genetics is going to change the way we conceive our children, and will have a substantial influence on the family. Two concepts of the family have been present in the ethical debate: the traditional model and the care model of the family. The first one has been rightly criticized because it privileges form over function. I will show that the second model is also insufficient and does not answer to the moral challenge of human natality, particularly from a child's (...) point of view. Instead, I will suggest a third, kinship model of the family as moral agent. In post-traditional and post-patriarchal societies, the family must be reconsidered as actor in the ethical debates. This poses a challenge for ethical theory. The family's interests are best protected by a concept of relational privacy. (shrink)

On 9 May 2005, the Israeli Ministry of Health issued guidelines spelling out the conditions under which sex selection by preimplantation genetic diagnosis for social purposes is to be permitted in Israel. This article first reviews the available medical methods for sex selection, the preference for children of a specific gender in various societies and the ethical controversies surrounding PGD for medical and social purposes in different countries. It focuses then on the question of whether procreative liberty or parental responsibility (...) should be the centre of attention in this context. Finally, the article critically examines the new Israeli guidelines and their implications for the women undergoing the necessary medical treatments, for the children born as a result, for other members of the family and for society in general. (shrink)

Definition of the problemFrom an ethical point of view we analyse the ruling of the German Federal Joint Committee (Gemeinsamer Bundesausschuss, G‑BA) of September 2019 to revise the guidelines about the coverage of noninvasive prenatal tests (NIPT) by mandatory health insurance, in order to include them under specified conditions. The decision contains four essential elements: a definition of the aim of NIPT testing (to avoid invasive testing), a criterion of access (test must be “necessary” for the pregnant woman to tackle (...) her individual situation), statements about the process of decision-making (after counselling by a physician and case by case) and a normative contextualization (termination of pregnancy under § 218 a German penal law) which is to be found in its explanations. There are tensions in the proposed model that oscillate about two axes: (1) The suffering that results from a possible birth of a child with trisomy or from not knowing about the genetic condition of the fetus can ultimately only be evaluated subjectively, from the perspective of the pregnant woman. (2) The meaning of an individual decision in the case-by-case model remains unclear because when judging about individual cases general points of view also need to be considered. However, we argue that the model of the G‑BA could be a sociopolitically and ultimately also ethically defensible pragmatic solution, exactly because of its paradoxes and its inherent flexibility. (shrink)

BackgroundThe clinical introduction of non-invasive prenatal testing for fetal aneuploidies is currently transforming the landscape of prenatal screening in many countries. Since it is noninvasive, safe and allows the early detection of abnormalities, NIPT expanded rapidly and the test is currently commercially available in most of the world. As NIPT is being introduced globally, its clinical implementation should consider various challenges, including the role of the surrounding social and cultural contexts. We conducted a qualitative study with healthcare professionals in Lebanon (...) and Quebec as case studies, to highlight the relevance of cultural contexts and to explore the concerns that should be taken into account for an ethical implementation of NIPT.MethodsWe conducted semi-structured interviews with 20 healthcare professionals (HCPs), 10 from each country, practicing in the field of prenatal screening and follow up diagnostic testing, including obstetricians and gynecologists, nurses, medical geneticists and, genetic counselors. We aimed to 1) explore HCPs’ perceptions and views regarding issues raised by NIPT and 2) to shed light on ways in which the introduction of the same technology (NIPT) in two different contexts (Lebanon and Quebec) raises common and different challenges that are influenced by the cultural norms and legal policies in place.ResultsWe identified challenges to the ethical implementation of NIPT. Some are common to both contexts, including financial/economic, social, and organizational/ educational challenges. Others are specific to each context. For example, challenges for Lebanon include abortion policy and financial profit, and in Quebec challenges include lobbying by Disability rights associations and geographical access to NIPT.ConclusionsOur findings highlight the need to consider specific issues related to various cultural contexts when developing frameworks that can guide an ethically sound implementation of NIPT. Further, they show that healthcare professional education and training remain paramount in order to provide NIPT counseling in a way that supports pregnant women and couples’ choice. (shrink)

Recent developments in biotechnology and genetic research are raising complex ethical questions concerning the legitimate scope and limits of genetic intervention. As we begin to contemplate the possibility of intervening in the human genome to prevent diseases, we cannot help but feel that the human species might soon be able to take its biological evolution in its own hands. 'Playing God' is the metaphor commonly used for this self-transformation of the species, which, it seems, might soon be within our grasp. (...) In this important new book, Jurgen Habermas - the most influential philosopher and social thinker in Germany today - takes up the question of genetic engineering and its ethical implications and subjects it to careful philosophical scrutiny. His analysis is guided by the view that genetic manipulation is bound up with the identity and self-understanding of the species. We cannot rule out the possibility that knowledge of one's own hereditary factors may prove to be restrictive for the choice of an individual's way of life and may undermine the symmetrical relations between free and equal human beings. In the concluding chapter - which was delivered as a lecture on receiving the Peace Prize of the German Book Trade for 2001 - Habermas broadens the discussion to examine the tension between science and religion in the modern world, a tension which exploded, with such tragic violence, on September 11th. (shrink)

The question who is the subject of the right to prenatal diagnosis may be answered in four ways: the parents, the child, society, or no one. This article investigates the philosophical issues involved in each of these answers, which touch upon the conditions of personal identity, the principle of privacy, the scope of social responsibility, and the debate about impersonalism in ethics.

Ziel dieser Studie ist die Konzeption eines Menschenbildes, einer Denk- und Handlungsdimension, die nicht nur den universalen Menschen in den Mittelpunkt ruckt, sondern auch die Pluralitat, Herkunftigkeit, Leiblichkeit, Geschlechtlichkeit und Endlichkeit der Menschen als grundlegend anerkennt. Ein Denken von der Geburt her bestatigt den generativen Zusammenhang der Menschen untereinander und bestimmt deren Selbstverstandnis und ihr Verhaltnis zu sich selbst, zum Anderen, zur Welt und Geschichte. Somit hat die philosophische Ergrundung und Neufassung des Geborenseins Konsequenzen fur Politik und Ethik. Vor dem (...) Hintergrund, dass Sterblichkeit und Tod in der Philosophiegeschichte eine dominante Rolle gespielt haben, untersucht die Autorin die philosophischen Bedeutungen, die metaphorischen Vereinnahmungen, die Missachtungen und die Vergessenheit des Geborenseins von der Antike uber die Aufklarung bis hin zur Gegenwart. In einem zweiten Teil geht es um psychologische, phanomenologische und moralphilosophische Betrachtungen des Geborenseins, die Notwendigkeit einer methodischen Erweiterung von Husserls Transzendentalphanomenologie hin zu einer generativen Phanomenologie und um eine Neuformulierung des Natalitatkonzepts von Hannah Arendt im Sinne einer politischen Ethik. (shrink)

ZusammenfassungZumindest bei bestimmten Gruppen kann die Aneuploidietestung im Rahmen der PID für die Schwangerschaft medizinisch sinnvoll sein. Die gegenwärtige Rechtslage in Deutschland scheint die PID auf eine Chromosomenfehlverteilung im Embryo nicht auszuschließen; diese Testung muss aber im Einzelfall begründet und von der Frau bei einer PID-Ethikkommission beantragt werden. Der Artikel untersucht die Frage aus ethischer und rechtlicher Sicht, ob prinzipielle Gründe dagegen stehen, dass die zuständigen Ethikkommissionen Anträgen auf die Durchführung von Aneuploidietests zustimmen. Es können drei verschiedene Fallkonstellationen unterschieden werden, (...) in denen Aneuploidietests Teil von unterschiedlichen Handlungen werden und entsprechend unterschiedliche ethische Implikationen aufweisen: Das Ziel der IVF kann (i) der Aneuploidietest selbst sein, oder (ii) die IVF kann eine indizierte Unfruchtbarkeitsbehandlung sein, bei der man auch PID und Aneuploidietests durchführen kann, oder (iii) die PID ist indiziert zur Vermeidung einer Erbkrankheit oder Chromosomenschädigung und Aneuploidie kann in dieser Situation ein Zufalls- oder ein Zusatzbefund werden. Ethische Argumente, die grundsätzlich gegen eine Zulässigkeit von Aneuploidietests sprechen könnten, sind die Vermeidung einer Diskriminierung von Menschen mit Aneuploidien und der Embryonenschutz. Sie könnten gegen das Fallszenario (i) erhoben werden, aber nicht gegen (ii) und (iii). Es gibt aber mindestens drei ethische Argumente, die für die Zulässigkeit sprechen: die „gute Praxis“ der IVF, die Pflicht gegenüber dem entstehenden Kind und die Mitsprache des Paares. Ergebnis: Es ist aus rechtlichen und ethischen Gründen nicht ausgeschlossen und deshalb in Deutschland durch die zuständigen PID-Kommissionen offen zu diskutieren, ob Aneuploidietests in der PID möglich werden. (shrink)

The concept of the ‘well-being of the child’ (like the ‘child’s welfare’ and ‘best interests of the child’) has remained underdetermined in legal and ethical texts on the needs and rights of children. As a hypothetical construct that draws attention to the child’s long-term welfare, the well-being of the child is a broader concept than autonomy and happiness. This paper clarifies some conceptual issues of the well-being of the child from a philosophical point of view. The main question is how (...) well-being could in practice acquire a concrete meaning and content for a particular issue or situation. A phenomenological-hermeneutic research perspective will be outlined that allows the child’s well-being to be elucidated and specified as an anthropological and ethical idea. It is based on a contextual understanding of generative relationships, a combination of the theory and practice of making sense, here described as ‘generative insight’, which could provide ethical guidance for decision making in families, legal practice, medicine or biomedical research. (shrink)

To explore how cultural beliefs are reflected in different popular views of pre-implantation genetic diagnosis for human leukocyte antigen match (popularly known as “savior siblings”), we compare the reception and interpretations, in Germany and Israel, of the novel/film My Sister’s Keeper. Qualitative analysis of reviews, commentaries and posts is used to classify and compare normative assessments of PGD for HLA and how they reproduce, negotiate or oppose the national policy and its underlying cultural and ethical premises. Four major themes emanated (...) from the comparison: loss of self-determination and autonomy; loss of dignity through instrumentalization; eugenics and euthanasia; and saving life. In both countries, most commentaries represented a dominant position, with a few negotiated positions. We also highlight the decoding of a relatively less explored bioethical aspect of My Sister’s Keeper’s narrative, namely the meaning of euthanasia. We conclude by discussing how the findings relate to attempts of providing cultural explanations for the regulation of HLA-PGD. (shrink)