Rouven Porz

So, what is an embryo? A comparative study of the views of those asked to donate embryos for hESC research in the UK and Switzerland

The moral status of the human embryo has gained much attention in debates over the acceptability, or otherwise, of human embryonic stem cell research. Far less attention has been paid to the suppliers of those embryos: people who have undergone IVF treatment to produce embryos to assist them to have a baby. It is sociologically and ethically important to understand their views and experiences of being asked to donate embryos for research if we are to fully understand the wider social and regulatory aspects of hESC science. This paper reports on parallel studies investigating these issues in the UK and in Switzerland. The studies reveal the inextricable entangling of the social and moral status of embryos. Since donors participate in different discursive domains and contexts (public, clinic, family) that shape their perception of “what” an embryo is, their views of embryos embody conflicting ideas and ambivalences.

How to relate the empirical to the normative: toward a phenomenologically informed hermeneutic approach to bioethics.

In doing ethics we are seeking clarity about situations of ethical difficulty. Sometimes direct practical advice is what we are looking for. This can be advice either for ourselves, for other people, or for the society we live in. Clarification and advice can concern moral issues (what somebody ‘‘ought’’ to do) or issues of aims and preferences (what somebody can desire). In bioethics, both perspectives matter. Complicated situations of decisionmaking in medicine, biological research, or biotechnology raise ethical questions that ideally should be clarified in such a way that the results prove helpful for those who are practically involved, for example, patients, professionals, scientists, supervisors, or regulators (for succinctness, in this article we call all of these ‘‘practitioners’’). We call bioethics ‘‘normative’’ if it works toward recommendations that do not simply describe a field of practice but contain prescriptive elements that say something about what practitioners should do, why they should do so, what they could reasonably aim at, or how they can reach good decisions. In order to provide meaningful advice or helpful clarifications, ethicists must know something about the experiential landscape of the given situation of the practitioner involved. The exploration and understanding of this landscape has become an area of strong interest within ethical methodology; in the words of Sissela Bok:

Donating Embryos to Stem Cell Research

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.

Research Ethics 2.0: New Perspectives on Norms, Values, and Integrity in Genomic Research in Times of Even Scarcer Resources

Research ethics anew gained importance due to the changing scientific landscape and increasing demands and competition in the academic field. These changes are further exaggerated because of scarce(r) resources in some countries on the one hand and advances in genomics on the other. In this paper, we will highlight the current challenges thereof to scientific integrity. To mark key developments in research ethics, we will distinguish between what we call research ethics 1.0 and research ethics 2.0. Whereas research ethics 1.0 focuses on individual integrity and informed consent, research ethics 2.0 entails social scientific integrity within a broader perspective of a research network. This research network can be regarded as a network of responsibilities in which every stakeholder involved has to jointly meet the ethical challenges posed to research.

Tragedy and Grenzsituationen in genetic prediction

Philosophical anthropologies that emphasise the role of the emotions can be used to expand existing notions of moral agency and learning in situations of great moral complexity. In this article we tell the story of one patient facing the tough decision of whether to be tested for Huntington’s disease or not. We then interpret her story from two different but compatible philosophical entry points: Aristotle’s conception of Greek tragedy and Karl Jaspers’ notion of Grenzsituationen (boundary situations). We continue by indicating some ways in which these two positions may be used for reflecting upon different perspectives involved in clinical decision-making, those of patients, clinicians and bioethicists. We conclude that the ideas we introduce can be used as hermeneutic tools for situating learning and dialogue within a broader cultural field in which literature and art may also play important roles.

Sourcing Human Embryonic Tissue: The Ethical Issues

For some tissue engineering projects human embryonic cells are used. The feature of pluripotency makes them particularly interesting to study and desirable to use. The human embryo, however, is an entity that is in many ways special and precious. It is a being that is in a process of ongoing development—if transferred to the uterus and the conditions are favorable, it will develop into a fetus and be born as a child. Experiments with human embryos have been necessary and have stimulated ethical controversies in the context of reproductive technologies and genetic diagnostics. But stem cell research demands extensive and systematic sourcing of embryonic cells as a resource for new biotechnological developments. From this point of view it is not surprising that this research is surrounded by ethical questions.