Christoph Rehmann-Sutter

This paper is based on linked qualitative studies of the donation of human embryos to stem cell research carried out in the United Kingdom, Switzerland, and China. All three studies used semi-structured interview protocols to allow an in-depth examination of donors’ and non-donors’ rationales for their donation decisions, with the aim of gaining information on contextual and other factors that play a role in donor decisions and identifying how these relate to factors that are more usually included in evaluations made by theoretical ethics. Our findings have implications for one factor that has previously been suggested as being of ethical concern: the role of gratitude. Our empirical work shows no evidence that interpersonal gratitude is an important factor, but it does support the existence of a solidarity-based desire to “give something back” to medical research. Thus, we use empirical data to expand and refine the conceptual basis of bioethically theorizing the IVF–stem cell interface

ABSTRACT The part played by time in ethics is often taken for granted, yet time is essential to moral decision making. This paper looks at time in ethical decisions about having a genetic test. We use a patient‐centred approach, combining empirical research methods with normative ethical analysis to investigate the patients' experience of time in (i) prenatal testing of a foetus for a genetic condition, (ii) predictive or diagnostic testing for breast and colon cancer, or (iii) testing for Huntington's disease (HD). We found that participants often manipulated their experience of time, either using a stepwise process of microdecisions to extend it or, under the time pressure of pregnancy, changing their temporal ‘depth of field’. We discuss the implications of these strategies for normative concepts of moral agency, and for clinical ethics.

Do we have a moral obligation to genetically cure embryos rather than selecting between them? Such an obligation would be an ethical argument for human germline gene editing (hGGE) to avoid the inheritance of genetic conditions instead of using pre-implantation genetic diagnosis (PGD). In this article, the intuition that we do have such a moral obligation is critically evaluated. The article first develops a theoretical framework for discussing the ethical questions of hGGE. This framework is based on an exploration of the phenomenology of the germline, from both biological and philosophical points of view. It interprets the germline as an embodied intergenerational relationship that carries meanings for the parents and for the children-to-be. It relates them to previous family generations, and to their own children. Hence, the germline is a phenomenologically much richer concept than just the line of cells that carry the inheritable genetic information. Against this background, selection is compared with editing and a key moral difference is identified: editing is in effect an act of co-constructing the genome, which necessarily assumes a wider range of responsibilities that include those parts that are left unedited. Introducing hGGE into societies would hence significantly affect and change the moral structure of the intergenerational relationships. Selective implantation, on the other hand (in the context of PGD), is based on a moral choice in favour of the embryo which is to be unaffected by a disease or disability that causes suffering, rather than selecting knowingly the affected one. The claim that hGGE is in the best interests of the child-to-be counterfactually assumes the presence of a patient who has an interest in being cured. The embryo (a potential future patient) is, however, brought into existence by the same act that is also the treatment. The future children who would result from treatment by hGGE may rather have an interest in not having been treated by hGGE, since it makes the intergenerational relationships more complicated and burdensome. The question ‘Is hGGE justified, or even an obligation?’ is answered with a No.

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.

There is no consensus about the ethical ideal of genetic counselling and decision making. This paper reviews and discusses some of the most prominent ethical arguments that have been brought forward against the non-directiveness principle (NDP), which has been the ethical gold standard for a long time. These arguments can be classed in four categories: (i) NDP can be against the best interests of the individuals concerned; (ii) NDP has ideological elements that do not adequately represent the counselling ethos; (iii) NDP was historically a defensive tool that protected the interests of geneticists against social criticism and against litigation; (iv) NDP falsely assumes individual responsibility and hides the shared responsibility of other social actors. The paper argues that a serious understanding of moral space, which people need in order to make ‘their own’ decisions, leads to a necessarily relational concept of agency. The positive counterpart of NDP is to allow a space for agency. Allowing agency implies offering the kind of support that the decision-making person really needs. To make a good decision about personal genetics implies being empowered to act as a contextually sensitive person who is aware of relationships and corresponding responsibilities

Guidelines provided by the Director of Public Prosecutions suggest that anyone assisting another to commit suicide in England and Wales, or elsewhere, will not be prosecuted provided there are no self-seeking motives and no active encouragement. This reflects the position in Switzerland. There, however, no difference is made between assistance and inducement. In addition, the Swiss approach makes it possible to establish organisations to assist the suicides of both their citizens and foreign visitors. It should not be assumed that this approach is without controversy in Switzerland. Proposals for reform continue to be debated there, not least because of the concern about some of the actual practices of certain end-of-life organisations. It is likely that a few English citizens will continue to avail themselves of these services in Switzerland if they cannot find the help they require here. This paper explores the legitimacy of the current restrictive position adopted towards assisted suicide in England. It argues that the provisions within the guidelines prohibiting organisations that assist suicides, leaves some without the help they need. While legislative decriminalisation of assisted suicide and the establishment of state-sponsored suicide centres would represent the most permissive regime, this paper proposes that this would be a step too far. The preference here is for decriminalisation but adopting a ‘middle way’ between the two extremes: the more permissive approach provided by the ‘Swiss model’ is one that could be employed here, albeit within a more robust regulatory regime

The relationship of genes, genomes, the organism and the environment where development takes place can be explained in two dramatically different ways. The two views are characterized as ,,program theory' and ,,systemic theory' of DNA. The first assumes that genetic information is encoded in DNA and preexists development. Environmental influences are treated as conditions for adequate gene expression, sometimes as selective conditions for different developmental pathways. The second assumes that genetic information that makes a difference in development is generated in the developmental contexts themselves. Environment, according to this account, matters per se, as a distinct kind of causes in developmental systems. The laboratory, a place where person-independent reproducibility of observations is enacted, may act as a selective epistemological factor that makes the program approach more viable than the systemic. Other reasons for the inclination of 20th Century's genetics towards the program view however are rooted in an a priori metaphysical tradition that placed DNA in the role of the essential causa formalis for ontogeny. German Die Beziehung zwischen Genen, Genomen, Organismen und der Umwelt, in der die Entwicklung stattfindet, kann auf zwei dramatisch verschiedene Weisen erklärt werden. Diese beiden Ansichten werden charakterisiert als ,,ProgrammTheorie und als ,,systemische Theorie der DNA. Die erstere nimmt an, dass genetische Information in der DNA codiert ist und vor der Entwicklung schon existiert. Umwelteinfl-üsse werden als Bedingungen für eine adequate Gen expression behandelt, manche als selektive Bedingungen für die Auswahl zwischen verschiedenen Entwicklungswegen. Die zweite Ansicht nimmt an, dass genetische Information, die in der Entwicklung einen Unterschied macht, in den Kontexten der Entwicklung erst erzeugt wird. Die Umwelt ist gemäss diesem Ansatz per se wichtig, als eine eigene Art von Ursachen in sich entwickelnden Systemen. Das Laboratorium, ein Ort, in dem die personenunabhängige Reproduzierbarkeit von Beobachtungen inszeniert wird, kann als ein selek tiver epistemologischer Faktor angesehen werden, der die Programm-Sicht des Genoms favorisiert. Andere Gründe für die Neigung der Genetik des 20. Jahrhunderts zur Programm-Theorie liegen aber in einer metaphysischen Tradi tion, die der DNA die Rolle der essentiellen causa formalis für die Ontogenese verliehen hat.

Scientific knowledge is experimental knowledge. Such knowledge can be seen as "forbidden," either because the experiments leading to that knowledge are seen as immoral, or because interventions made possible by that knowledge could be morally offensive. There is currently an interesting case in the realm of genetic engineering, in which moral condemnations have been forthcoming but have not been unanimous. Here I present an analysis of this heterogeneity of moral assessment in the hope that this study of a single case might be helpful for the discussion of bioethical generalizations around the category of the "forbidden."

The social interface between reproductive medicine and embryonic stem cell research has been investigated in a pilot study at a large IVF clinic in central China. Methods included observation, interviews with hospital personnel, and five in-depth qualitative interviews with women who underwent IVF and who were asked for their consent to the donation of embryos for use in medical (in fact human embryonic stem cell) research. This paper reports, and discusses from an ethical perspective, the results of an analysis of these interviews. The participants talked of extreme social pressure to become pregnant. Once they had a baby, ‘spare’ embryos lost practical significance due to the Chinese one-child policy. In the context of decision making about donating embryos to research, the women used the clinical distinctions between ‘good and bad quality’ embryos and also between frozen and transferred embryos, as guiding moral distinctions. In the absence of concrete information about what sort of research their embryos should be used for, the women interviewed either refused consent (for fear that the embryo would be given to another couple) or accepted, expressing motives of solidarity with other women in a similar situation. This reveals that they filled the knowledge gap with an image of research improving fertility treatment

Health-care professionals in end-of-life care are frequently confronted with patients who seem to be ‘ambivalent’ about treatment decisions, especially if they express a wish to die. This article investigates this phenomenon by analysing two case stories based on narrative interviews with two patients and their caregivers. First, we argue that a respectful approach to patients requires acknowledging that coexistence of opposing wishes can be part of authentic, multi-layered experiences and moral understandings at the end of life. Second, caregivers need to understand when contradictory statements point to tensions in a patient’s moral experience that require support. Third, caregivers should be careful not to negatively label or even pathologize seemingly contradictory patient statements