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1.  “The angel of the house” in the realm of ART: feminist approach to oocyte and spare embryo donation for research 
The spectacular progress in assisted reproduction technology that has been witnessed for the past thirty years resulted in emerging new ethical dilemmas as well as the revision of some perennial ones. The paper aims at a feminist approach to oocyte and spare embryo donation for research. First, referring to different concepts of autonomy and informed consent, we discuss whether the decision to donate oocyte/embryo can truly be an autonomous choice of a female patient. Secondly, we argue the commonly adopted language of gift is misleading and that calling for altruism could put female patients at risk of exploitation. Finally, we point out that the presence of gender stereotypes in the procreative area casts doubt whether even a more robust notion of informed consent manages to overcome this risk.
doi:10.1007/s11019-013-9513-1
PMCID: PMC3897863  PMID: 24037462
Gender stereotype; Exploitation; Oocyte and spare embryo donation for research; Autonomy and internalized oppression; Informed consent
2.  Finding their voices again: a media project offers a floor for vulnerable patients, clients and the socially deprived 
‘DU bist Radio’ (DBR) is an award winning [DBR has been awarded with the “Catholic Media Award of the German Bishops Conference, Prädikat WERTvoll” (2011), the Suisse “Media Prize Aargau/Solothurn” (2010), the German “Alternative Media Award” (2009) and was nominated for the “Prix Europa” (2009)] monthly radio format that goes on air on three Swiss radio stations. The purpose of this program which was first broadcast in 2009 is the development of a new media format which—without applying any journalistic (or other) filter and influence—conveys authenticity of expression amongst society’s most vulnerable fellow citizens such as patients, clients and the socially deprived. So-called marginal groups are encouraged to speak for themselves, as a possible paradigm case for encouraging the inclusion of patients’ and relatives’ “unfiltered” voices in general and in clinical ethics as well. Before handing over the microphone to the groups in focus, a team of journalists, educated in medical ethics, over a period of 4 days, teaches them on-site radio skills and craft. Once this task is completed and the actual production of the broadcast begins, the media crew does not exert any influence whatsoever on the content of the 1-h program. Thus, the final product is solely created and accounted for by the media-inexperienced participants, leading to unforeseen and often surprising results. It is discussed that the DBR approach of fostering authenticity of expression can serve as an enhancement to today’s respect and autonomy oriented field of medical ethics.
doi:10.1007/s11019-013-9468-2
PMCID: PMC3832779  PMID: 23404541
Medical ethics; Media ethics; DU bist Radio; DBR; Patient participation; Vulnerable groups; Aidōs; Patient rights; Patient discrimination
3.  Conflicts and conflict regulation in hospices: nurses’ perspectives 
The present article considers conflicts and conflict regulation in hospices. The authors carried out a qualitative study in three hospices in North Rhine-Westphalia, Germany, to explore how conflicts arise and how conflict regulation proceeds. Hospice nurses should act according to a set of ethical codes, to mission statements of the institution and to professional standards of care. In practice the subjective interpretations of codes and/or models concerning questions of care are causes of conflicts among nurses, with doctors, patients and family members. The management has two choices to react to these conflicts. It can either tolerate the conflicts, as long as they do not disturb the daily routine. Or it can increase the degree of organisation by integrating the different viewpoints into its own program and/or by restructuring its organisational units.
doi:10.1007/s11019-012-9459-8
PMCID: PMC3832769  PMID: 23264046
Conflict regulation; End-of-life decision making; Ethics of care; Hospice; Palliative care; Terminal care
4.  The relative importance of undesirable truths 
The right not to know is often defended on the basis of the principle of respect for personal autonomy. If I choose not to acquire personal information that impacts on my future prospects, such a choice should be respected, because I should be able to decide whether to access information about myself and how to use it. But, according to the incoherence objection to the right not to know in the context of genetic testing, the choice not to acquire genetic information undermines the capacity for autonomous decision making. The claim is that it is incoherent to defend a choice that is inimical to autonomy by appealing to autonomy. In this paper, I suggest that the choice not to know in the context of genetic testing does not undermine self-authorship, which is a key aspect of autonomous decision making. In the light of this, the incoherence objection to the right not to know seems less compelling.
doi:10.1007/s11019-012-9449-x
PMCID: PMC3832758  PMID: 23160857
Right not to know; Genetic testing; Personal narratives; Autonomy; Open future; Self-authorship; Self-knowledge
5.  Organ transplantation and meaning of life: the quest for self fulfilment 
Today, the frequency and the rate of success resulting from advances in medicine have made organ transplantations an everyday occurrence. Still, organ transplantations and donations modify the subjective experience of human beings as regards the image they have of themselves, of body, of life and of death. If the concern of the quality of life and the survival of the patients is a completely human phenomenon, the fact remains that the possibility of organ transplantation and its justification depend a great deal on the culture in which we live. The exploration of the philosophical tradition allows for a reconsideration of organ transplantation. If we listen to people who have experienced the decline of one of their organs and their own rebirth through the organ of someone else, we arrive at the conclusion that they went through an extreme experience in which nothing appeared as before. All those experiences intensify philosophical questionings on the meaning of life with respect to self fulfilment. The concept of nature as the experience of others can be an authentic source from which to nourish our thoughts about organ transplantation. However, and this is our hypothesis, we need something more if we are to decide something about our own life. We need a hermeneutical stance in relation to ourselves and to our world. Philosophical counselling, as a long established tradition originating with Pythagoras and later reframed by the German philosopher Achenbach could be useful in inspiring a reflection on the good life, chiefly as it takes the form of a Socratic dialogue.
doi:10.1007/s11019-012-9439-z
PMCID: PMC3696169  PMID: 23014955
Nature; Naturalism; Phenomenology; Hermeneutics; Aristotle; Descartes; Meaning; Wisdom; Organ transplantation
6.  RETRACTED ARTICLE: A stoic defence of rational suicide 
doi:10.1007/s11019-012-9424-6
PMCID: PMC3832770  PMID: 22760203
9.  NICE technology appraisals: working with multiple levels of uncertainty and the potential for bias 
One of the key roles of the English National Institute for Health and Clinical Excellence (NICE) is technology appraisal. This essentially involves evaluating the cost effectiveness of pharmaceutical products and other technologies for use within the National Health Service. Based on a content analysis of key documents which shed light on the nature of appraisals, this paper draws attention to the multiple layers of uncertainty and complexity which are latent within the appraisal process, and the often socially constructed mechanisms for tackling these. Epistemic assumptions, bounded rationality and more explicitly relational forms of managing knowledge are applied to this end. These findings are discussed in the context of the literature highlighting the inherently social process of regulation. A framework is developed which posits the various forms of uncertainty, and responses to these, as potential conduits of regulatory bias—in need of further research. That NICE’s authority is itself regulated by other actors within the regulatory regime, particularly the pharmaceutical industry, exposes it to the threat of regulatory capture. Following Lehoux, it is concluded that a more transparent and reflexive format for technological appraisals is necessary. This would enable a more robust, defensible form of decision-making and moreover enable NICE to preserve its legitimacy in the midst of pressures which threaten this.
doi:10.1007/s11019-011-9376-2
PMCID: PMC3617347  PMID: 22198480
Alzheimer’s; Complexity; Hope; Polycentric regimes; Regulation; Uncertainty
10.  Sense of self-determination and the suicidal experience. A phenomenological approach 
In this paper phenomenological descriptions of the experiential structures of suicidality and of self-determined behaviour are given; an understanding of the possible scopes and forms of lived self-determination in suicidal mental life is offered. Two possible limits of lived self-determination are described: suicide is always experienced as minimally self-determined, because it is the last active and effective behaviour, even in blackest despair; suicide can never be experienced as fully self-determined, even if valued as the authentic thing to do, because no retrospective re-evaluation from some future vantage is possible. The phenomenological descriptions of the possible scope of lived self-determination in suicidality, presented in this paper, should prove to be extremely helpful in three different fields of interest: (a) ethical debates regarding the pros and cons of autonomous or heteronomous suicide; (b) clinical day-to-day practice with respect to treating suicidal people; (c) people who suffered a suicidal crisis, attempted suicide or lost loved ones through suicides. (155 words).
doi:10.1007/s11019-011-9358-4
PMCID: PMC3617352  PMID: 22042597
Agency; Autonomy; Conduct of life; Experience of being rescued; Minimal sense of self-determination; Phenomenology; Self-effectivity; Suicide
11.  We’re not in it for the money—lay people’s moral intuitions on commercial use of ‘their’ biobank 
Great hope has been placed on biobank research as a strategy to improve diagnostics, therapeutics and prevention. It seems to be a common opinion that these goals cannot be reached without the participation of commercial actors. However, commercial use of biobanks is considered morally problematic and the commercialisation of human biological materials is regulated internationally by policy documents, conventions and laws. For instance, the Council of Europe recommends that: “Biological materials should not, as such, give rise to financial gain”. Similarly, Norwegian legislation reads: “Commercial exploitation of research participants, human biological material and personal health data in general is prohibited”. Both articles represent kinds of common moral intuitions. A problem, however, is that legislative documents are too vague and provide room for ample speculation. Through the use of focus group interviews with Norwegian biobank donors, we have tried to identify lay intuitions and morals regarding the commercial use of biobanks. Our findings indicate that the act of donation and the subsequent uses of the samples belong to two different spheres. While concerns around dignity and commodification were present in the first, injustice and unfairness were our informants’ major moral concerns in the latter. Although some opposition towards commercial actors was voiced, these intuitions show that it is possible to render commercial use of biobanks ethically acceptable based on frameworks and regulations which hinder commodification of the human body and promote communal benefit sharing.
doi:10.1007/s11019-011-9353-9
PMCID: PMC3617351  PMID: 22028241
Benefit sharing; Biobanking; Commercialisation; Commodification; Focus group research; Lay perspective
12.  Religio-ethical discussions on organ donation among Muslims in Europe: an example of transnational Islamic bioethics 
This article analyzes the religio-ethical discussions of Muslim religious scholars, which took place in Europe specifically in the UK and the Netherlands, on organ donation. After introductory notes on fatwas (Islamic religious guidelines) relevant to biomedical ethics and the socio-political context in which discussions on organ donation took place, the article studies three specific fatwas issued in Europe whose analysis has escaped the attention of modern academic researchers. In 2000 the European Council for Fatwa and Research (ECFR) issued a fatwa on organ donation. Besides this “European” fatwa, two other fatwas were issued respectively in the UK by the Muslim Law (Shariah) Council in 1995 and in the Netherlands by the Moroccan religious scholar Muṣṭafā Ben Ḥamza during a conference on “Islam and Organ Donation” held in March 2006. The three fatwas show that a great number of Muslim religious scholars permit organ donation and this holds true for donating organs to non-Muslims as well. Further, they demonstrate that transnationalism is one of the main characteristics of contemporary Islamic bioethics. In a bid to develop their own standpoints towards organ donation, Muslims living in the West rely heavily on fatwas imported from the Muslim world.
doi:10.1007/s11019-011-9352-x
PMCID: PMC3319889  PMID: 22015708
Islam; Fatwas; Organ donation; Islamic bioethics; Interplay of Islam and the West; Muslims in Europe
13.  On decoding and rewriting genomes: a psychoanalytical reading of a scientific revolution 
In various documents the view emerges that contemporary biotechnosciences are currently experiencing a scientific revolution: a massive increase of pace, scale and scope. A significant part of the research endeavours involved in this scientific upheaval is devoted to understanding and, if possible, ameliorating humankind: from our genomes up to our bodies and brains. New developments in contemporary technosciences, such as synthetic biology and other genomics and “post-genomics” fields, tend to blur the distinctions between prevention, therapy and enhancement. An important dimension of this development is “biomimesis”: i.e. the tendency of novel technologies and materials to mimic or plagiarize nature on a molecular and microscopic level in order to optimise prospects for the embedding of technological artefacts in natural systems such as human bodies and brains. In this paper, these developments are read and assessed from a psychoanalytical perspective. Three key concepts from psychoanalysis are used to come to terms with what is happening in research laboratories today. After assessing the general profile of the current revolution in this manner, I will focus on a particular case study, a line of research that may serve as exemplification of the vicissitudes of contemporary technosciences, namely viral biomaterials. Viral life forms can be genetically modified (their genomes can be rewritten) in such a manner that they may be inserted in human bodies in order to produce substances at specific sites such as hormones (testosterone), neurotransmitters (dopamine), enzymes (insulin) or bone and muscle tissue. Notably, certain target groups such as top athletes, soldiers or patients suffering from degenerative diseases may become the pioneers serving as research subjects for novel applications. The same technologies can be used for various purposes ranging from therapy up to prevention and enhancement.
doi:10.1007/s11019-011-9351-y
PMCID: PMC3384779  PMID: 21968838
Psychoanalysis of science; Genomics; Synthetic biology; Biomimesis; Viral biomaterials
14.  The right to enjoy the benefits of scientific progress: in search of state obligations in relation to health 
After having received little attention over the past decades, one of the least known human rights—the right to enjoy the benefits of scientific progress and its applications—has had its dust blown off. Although included in the Universal Declaration of Human Rights (UDHR) and in the International Covenant on Economic, Social and Cultural Rights (ICESCR)—be it at the very end of both instruments -this right hardly received any attention from States, UN bodies and programmes and academics. The role of science in societies and its benefits and potential danger were discussed in various international fora, but hardly ever in a human rights context. Nowadays, within a world that is increasingly turning to science and technology for solutions to persistent socio-economic and development problems, the human dimension of science also receives increased attention, including the human right to enjoy the benefits of scientific progress and its applications. This contribution analyses the possible legal obligations of States in relation to the right to enjoy the benefits of scientific progress and its applications, in particular as regards health.
doi:10.1007/s11019-011-9327-y
PMCID: PMC3190088  PMID: 21533845
Human Rights; International Human Rights Law; Universal Declaration of Human Rights; International Covenant on Economic, Social and Cultural Rights; Right to Enjoy the Benefits of Scientific Progress; Right to Health; Scientific Progress; Health
15.  Religious attitudes towards living kidney donation among Dutch renal patients 
Terminal kidney patients are faced with lower quality of life, restricted diets and higher morbidity and mortality rates while waiting for deceased donor kidney transplantation. Fortunately, living kidney donation has proven to be a better treatment alternative (e.g. in terms of waiting time and graft survival rates). We observed an inequality in the number of living kidney transplantations performed between the non-European and the European patients in our center. Such inequality has been also observed elsewhere in this field and it has been suggested that this inequality relates to, among other things, attitude differences towards donation based on religious beliefs. In this qualitative research we investigated whether religion might indeed (partly) be the explanation of the inequalities in living donor kidney transplants (LDKT) among non-European patients. Fifty patients participated in focus group discussions and in-depth interviews. The interviews were conducted following the focus group method and analyzed in line with Grounded Theory. The qualitative data analyses were performed in Atlas.ti. We found that religion is not perceived as an obstacle to living donation and that religion actually promotes helping and saving the life of a person. Issues such as integrity of the body were not seen as barriers to LDKT. We observed also that there are still uncertainties and a lack of awareness about the position of religion regarding living organ donation within communities, confusion due to varying interpretations of Holy Scriptures and misconceptions regarding the process of donation. Faith leaders play an important educational role and their opinion is influential. This study has identified modifiable factors which may contribute to the ethnic disparity in our living donation program. We argue that we need to strive for more clarity and awareness regarding the stance of religion on the issue of living donation in the local community. Faith leaders could be key figures in increasing awareness and alleviating uncertainty regarding living donation and transplantation.
doi:10.1007/s11019-011-9326-z
PMCID: PMC3319887  PMID: 21512856
Attitudes; Communication; Ethnicity; Kidney transplantation; Organ donation; Religion
16.  The ethics of ‘public understanding of ethics’—why and how bioethics expertise should include public and patients’ voices 
“Ethics” is used as a label for a new kind of expertise in the field of science and technology. At the same time, it is not clear what ethical expertise consists in and what its political status in modern democracies can be. Starting from the “participatory turn” in recent social research and policy, we will argue that bioethical reasoning has to include public views of and attitudes towards biomedicine. We will sketch the outlines of a bioethical conception of “public understanding of ethics,” addressing three different issues: (a) the methodological relevance of moral questions and problems raised by lay persons in everyday life regarding biomedicine and technology, (b) the normative relevance of such lay moralities for the justification of ethical decisions, and (c) the necessity of public deliberation in this context. Finally, we draw conclusions in view of the concepts and methods such a conception of “public understanding of ethics” should employ.
doi:10.1007/s11019-011-9321-4
PMCID: PMC3319876  PMID: 21448745
Ethics expertise; Public understanding of science; Lay moralities; Qualitative social research; Deliberation; Participation
17.  The role of the relatives in opt-in systems of postmortal organ procurement 
In almost all opt-in systems of postmortal organ procurement, if the deceased has not made a decision about donation, his relatives will be asked to make it. Can this decision power be justified? I consider three possible justifications. (1) We could presume the deceased to have delegated this power to his relatives. (2) It could be argued that, if the deceased has not made a decision, a proxy decision has to be made in his best interests. (3) The relatives could have a standing of their own because they are singled out from the parties whose interests are being affected by the decision by the special relation they had to the deceased. None of these arguments turns out to be convincing.
doi:10.1007/s11019-011-9317-0
PMCID: PMC3319896  PMID: 21365351
Opt-in system; Organ donation; Presumed consent; Proxy decision making; Special relations
18.  Dwelling, house and home: towards a home-led perspective on dementia care 
“Home” is well known from everyday experience, plays a crucial role in all kinds of narratives about human life, but is hardly ever systematically dealt with in the philosophy of medicine and health care. The notion of home is ambiguous, is often used in a metaphorical way, and is closely related to concepts such as house and dwelling. In this paper the phenomenon of home is explored by means of some phenomenological writings of Heidegger, Bollnow, Bachelard and Levinas. Common in their views is that being at home and dwelling mean something more fundamental than an activity we do along with other activities, such as working and travelling. Dwelling, building a house and being at home are fundamental aspects of human existence. Being human is dwelling. While exploring the relevance of this phenomenological perspective for medical theory and practice, the focus is on the care of people suffering from dementia.
doi:10.1007/s11019-011-9307-2
PMCID: PMC3127020  PMID: 21221813
Bachelard; Bollnow; Dementia; Dwelling; Heidegger; Home; House; Levinas; Metaphor; Phenomenology
19.  Travelling bioethics 
doi:10.1007/s11019-010-9300-1
PMCID: PMC3015400  PMID: 21086052
20.  The significance of lifeworld and the case of hospice 
Questions on what it means to live and die well are raised and discussed in the hospice movement. A phenomenological lifeworld perspective may help professionals to be aware of meaningful and important dimensions in the lives of persons close to death. Lifeworld is not an abstract philosophical term, but rather the opposite. Lifeworld is about everyday, common life in all its aspects. In the writings of Cicely Saunders, known as the founder of the modern hospice movement, facets of lifeworld are presented as important elements in caring for dying patients. Palliative care and palliative medicine today are, in many ways, replacing hospices. This represents not only a change in name, but also in the main focus. Hospice care was originally very much about providing support and comfort for, and interactions with the patients. Improved medical knowledge today means improved symptomatic palliation, but also time and resources spent in other ways than before. Observations from a Nordic hospice ward indicate that seriously ill and dying persons spend much time on their own. Different aspects of lifeworld and intersubjectivity in the dying persons’ room is presented and discussed.
doi:10.1007/s11019-010-9296-6
PMCID: PMC3126997  PMID: 21076876
Lifeworld; Hospice; Palliative care; Ethics in end-of-life-care; Evidence-based
21.  Institutional mistrust in the organization of pharmaceutical clinical trials 
In this paper I explore the politics of trust in the clinical testing of pharmaceuticals in the US. Specifically, I analyze trust in terms of its institutional manifestations in the pharmaceutical clinical trials industry. In the process of testing new drugs, pharmaceutical companies must (1) protect their proprietary information from the clinicians who conduct their studies, and (2) find a way to ensure human subjects' compliance to study protocols. Concern with these two critical issues leads drug companies to approach clinicians and research subjects with an attitude of mistrust and the desire to exert control over their activities. This orientation results in an institutionalization of mistrust that structures the relationships and activities required for the clinical development of new pharmaceutical products.
doi:10.1007/s11019-008-9154-y
PMCID: PMC2952304  PMID: 18633728
Clinical trials; Contract research; Drug development; Human subjects; Pharmaceutical industry; Trust
22.  Filial obligations to elderly parents: a duty to care? 
A continuing need for care for elderly, combined with looser family structures prompt the question what filial obligations are. Do adult children of elderly have a duty to care? Several theories of filial obligation are reviewed. The reciprocity argument is not sensitive to the parent–child relationship after childhood. A theory of friendship does not offer a correct parallel for the relationship between adult child and elderly parent. Arguments based on need or vulnerability run the risk of being unjust to those on whom a needs-based claim is laid. To compare filial obligations with promises makes too much of parents’ expectations, however reasonable they may be. The good of being in an unchosen relationship seems the best basis for filial obligations, with an according duty to maintain the relationship when possible. We suggest this relationship should be maintained even if one of the parties is no longer capable of consciously contributing to it. We argue that this entails a duty to care about one’s parents, not for one’s parents. This implies that care for the elderly is not in the first place a task for adult children.
doi:10.1007/s11019-010-9290-z
PMCID: PMC3015170  PMID: 20922568
Filial obligations; Care; Elderly parents; Adult children; Ethics; Health care policy
23.  The language of medicine and bioethics 
doi:10.1007/s11019-010-9275-y
PMCID: PMC2920411  PMID: 20680467
24.  The cultural context of patient’s autonomy and doctor’s duty: passive euthanasia and advance directives in Germany and Israel 
The moral discourse surrounding end-of-life (EoL) decisions is highly complex, and a comparison of Germany and Israel can highlight the impact of cultural factors. The comparison shows interesting differences in how patient’s autonomy and doctor’s duties are morally and legally related to each other with respect to the withholding and withdrawing of medical treatment in EoL situations. Taking the statements of two national expert ethics committees on EoL in Israel and Germany (and their legal outcome) as an example of this discourse, we describe the similarity of their recommendations and then focus on the differences, including the balancing of ethical principles, what is identified as a problem, what social role professionals play, and the influence of history and religion. The comparison seems to show that Israel is more restrictive in relation to Germany, in contrast with previous bioethical studies in the context of the moral and legal discourse regarding the beginning of life, in which Germany was characterized as far more restrictive. We reflect on the ambivalence of the cultural reasons for this difference and its expression in various dissenting views on passive euthanasia and advance directives, and conclude with a comment on the difficulty in classifying either stance as more or less restrictive.
doi:10.1007/s11019-010-9262-3
PMCID: PMC2949555  PMID: 20680469
Culture; End of life; Expert ethics committees; Doctors’ duties; German law; Living will; Israeli Law; Patients’ rights; Religion
25.  Euthanasia: agreeing to disagree? 
In discussions about the legalisation of active, voluntary euthanasia it is sometimes claimed that what should happen in a liberal society is that the two sides in the debate “agree to disagree”. This paper explores what is entailed by agreeing to disagree and shows that this is considerably more complicated than what is usually believed to be the case. Agreeing to disagree is philosophically problematic and will often lead to an unstable compromise.
doi:10.1007/s11019-010-9264-1
PMCID: PMC2949558  PMID: 20676776
Agree to disagree; Conscientious objection; Euthanasia; Liberalism; Public policy

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