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. (shrink)

The stipulation of living organ transplantation policy and practice in Bangladesh is family-oriented, with relatives being the only people legally eligible to donate organs. There have been very few transplantations of bone marrows, liver lobes, and kidneys from related-living donors in Bangladesh. The major question addressed in this study is why Bangladesh is not getting adequate organs for transplantation. In this study, I examin the stipulations of the policy and practice of living organ donation through the lens of 32 key (...) stakeholders including physicians and nurses, a health administrator, organ donors and recipients, and their family members, as they can shed light on the realities and problems of organ donation for transplantation in Bangladesh. My ethnography reveals that the family members are always encouraged to donate organs for transplantation, and saving the lives of relatives through organ donation is seen as a moral obligation. Many view saving the life of a relative by donating one’s organs as equivalent to saving one’s own life. An assessment of the dynamics of biomedicine, religion, and culture leads to the conclusion that the family-oriented organ donation policy and practice have been widely endorsed and accepted in Bangladesh, and Islamic ethical principles and collective family ethos undergird that policy and practice. However, the unavailability of medical resources, lack of post-operative coverage for organ donors, religious misconceptions and unawareness of the general public, and the absence of posthumously donated vital organs for transplantation are perceived to be the most common barriers to a successful living donor-recipient pair organ transplantation. By overcoming these obstacles, Bangladesh can develop a successful living donor-recipient pair organ transplantation program that will ensure improved healthcare outcomes, promote altruism and solidarity among Bangladeshi families, and protect the poor from having their organs sold to wealthy patients. (shrink)

With regard to organ donation, Germany is an ‘opt-in’ country, which requires explicit consent from donors. The relatives are either asked to decide on behalf of the donors’ preferences, if these are unknown or if the potential donor has explicitly transferred the decision to them. At the core of this policy lies the sociocultural and moral premise of a rational, autonomous individual, whose rights require legal protection in order to guarantee a voluntary decision. In concrete transplantation practices, the family plays (...) an even more important role. Potential donors and their families decide while being embedded in relations, a point which does still not gain full recognition. This particular discrepancy between policy and practice creates conflicts, which remain taboos of academic inquiry and public discourse. Our analysis shows a plurality of the family’s role in the transplantation process, which reveals an inner tension of the organ donation system. This tension provokes epistemic opacity on the one hand and different collective strategies as responses to discursive exclusion on the other. In future deliberations about organ donation, it is important to create spaces for open discussion, but also practices of communicative engagement, which take care of the needs and emotions attached to taboos. (shrink)

In 2004 prenatal risk assessment was implemented as a routine offer to all pregnant women in Denmark. It was argued that primarily the new programme would give all pregnant women an informed choice about whether to undergo prenatal testing. On the basis of ethnographic fieldwork in an ultrasound clinic in Denmark and interviews with pregnant women and their partners, we call into question the assumption underlying the new guidelines that more choice and more objective information is a source of empowerment (...) and control. We focus on one couple's experience of PRA. This case makes it evident how supposed choices in the context of PRA may not be experienced as such. Rather, they are experienced as complicated processes of meaning-making in the relational space between the clinical setting, professional authority and the social life of the couples. PRA users are reluctant to make choices and abandon health professionals as authoritative experts in the face of complex risk knowledge. When assumptions about autonomy and self-determination are inscribed into the social practice of PRA, authority is transferred to the couple undergoing PRA and a new configuration of responsibility evolves between the couple and their relationship to the foetus. It is argued that al-though the new programme of prenatal testing in Denmark presents itself in opposition to quasi-eugenic and paternalistic forms of governing couples' decisions it represents another form of government that works through the notion of choice. An ethics of a shared responsibility of PRA and its outcome would be more in agreement with how decisions are actually made. (shrink)

Social scientists often lament the fact that philosophically trained ethicists pay limited attention to the insights they generate. This paper presents an overview of tendencies in sociological and anthropological studies of morality, ethics and bioethics, and suggests that a lack in philosophical interest might be related to a tendency among social scientists to employ either a deficit model (social science perspectives accommodate the sense of context that philosophical ethics lacks), a replacement model (social scientists have finally found the “right way” (...) of doing ethics), or a dismissal model (ethics should be abandoned all together as a misconstrued veil of power). Increased awareness of differences in styles of reasoning and objects of research interest might help to overcome the hostility, and an anthropological project is presented as an invitation to a dialogue informed by awareness of such differences. (shrink)

Recent weeks have seen an increased focus on the ethical response to the COVID-19 pandemic. Ethics guidance has proliferated across Britain, with ethicists and those with a keen interest in ethics in their professions working to produce advice and support for the National Health Service. The guiding principles of the pandemic have emerged, in one form or another, to favour fairness, especially with regard to allocating resources and prioritizing care. However, fairness is not equivalent to equity when it comes to (...) healthcare, and the focus on fairness means that existing guidance inadvertently discriminates against people from ethnic minority backgrounds. Drawing on early criticisms of existing clinical guidance (for example, the frailty decision tool) and ethical guidance in Britain, this essay will discuss the importance of including sociology, specifically the relationship between ethnicity and health, in any ethical and clinical guidance for care during the pandemic in the United Kingdom. To do otherwise, I will argue, would be actively choosing to allow a proportion of the British population to die for no other reason than their ethnic background. Finally, I will end by arguing why sociology must be a key component in any guidance, outlining how sociology was incorporated into the cross-college guidance produced by the Royal College of Physicians. (shrink)

In this article we explore the contribution from social anthropology to the medical ethical debates about the use of informed consent in research, based on blood samples and other forms of tissue. The article springs from a project exploring donors’ motivation for providing blood and healthcare data for genetic research to be executed by a Swedish start-up genomics company. This article is not confined to empirical findings, however, as we suggest that anthropology provides reason to reassess the theoretical understanding of (...) autonomy as generally defined by Beauchamp and Childress. Careful consideration of the trust expressed by donors through the act of donation, furthermore, suggests that there is reason to redirect the ethical scrutiny from informed consent to issues concerning institutional arrangements and social responsibility. In particular, we suggest that an anthropological approach could facilitate a reconsideration of the political implications of using informed consent as a regulatory practice in tissue-based research. (shrink)

ABSTRACT The future development of bioethics has been discussed in a number of articles in recent years, principally with regard to the trend towards empirical studies. However, what is meant by empirical studies in this context and how it is to be used concretely have been subject to varying interpretations. The purpose of this article is to develop what we term the microethical approach as a concrete method for an empirically driven bioethics. By adopting a microethical perspective, we will illustrate (...) an analytical concept for describing and demonstrating how, as a result of contextual circumstances and forms of understanding, different individuals in their everyday life adopt different coping strategies and behavior patterns in relation to ethical values. From a deepened perspective, the complexity of human behavior becomes apparent, and knowledge is gained about how moral problems are perceived and construed by those whom they in fact affect. We intend first and foremost to develop the microethical methodology by elucidating the methods and approaches that can help in clarifying moral dilemmas on a microethical level, and how the relationship between the empirical material and the ethical analysis evolves over the course of the analysis. This is exemplified by a study of caregivers’ entrance into patients’ private lives through the provision of care and assistance in the home. (shrink)

Most of the literature on pharmacogenetics assumes that the main problems in implementing the technology will be institutional ones and that although it involves genetic testing, the ethical issues involved in pharmacogenetics are different from, even less than, ‘traditional’ genetic testing. Very little attention has been paid to how clinicians will accept this technology, their attitudes towards it and how it will affect clinical practice.This paper presents results from interviews with clinicians who are beginning to use pharmacogenetics and explores how (...) they view the ethics of pharmacogenetic testing, its use to exclude some patients from treatment, and how this kind of testing fits into broader debates around genetics. In particular this paper examines the attitudes of breast cancer and Alzheimer’s disease specialists. The results of these interviews will be compared with the picture of pharmacogenetics painted in the published literature, as a way of rooting this somewhat speculative writing in clinical practice. (shrink)

A selection of recent sociological literature dealing with bioethics, concentrating particularly on its interface with research ethics, is reviewed to reveal that the two disciplines of bioethics and sociology have tendencies to approach subject matters from opposed perspectives. These differences in approach have now been generally recognized, accepted and accommodated by proponents of both disciplines. A turning point in the relationship between the two disciplines may have been reached which augers greater mutual respect, appreciation and even learning.

In this paper I will briefly discuss the role and function of the ethical advisory committees and other ethics bodies that are supposed to take care of the ethical dimension of the biotechnology strategies. The expert ethical advice has created colourful discussion in many contexts, but here I aim to analyze the role and relevance of ethical expertise in the context of national and regional biotechnology strategies. I will argue that it may be quite unproblematic that the work of the (...) ethics committees and other governmental and semi-governmental ethics bodies concerns only a relatively narrow range of issues and do not directly concern all the important social and economic realignments that accompany biotechnology. Many important decisions concerning national and regional biotechnology strategies are political, and typically ethics committees can be only indirectly useful in political decision-making. The committees should be free to refrain from extending their work to the areas where they are not already involved. However, the ethics committees and other ethics bodies can promote public debate that forms the basis for political decision-making. (shrink)

ZusammenfassungDer vorliegende Beitrag setzt sich mit der Frage nach angemessenen Methodologien und Methoden zur Erhebung und Integration empirischen Wissens in der Bio- und Medizinethik auseinander. Ausgehend von Überlegungen zum Haupt-Gegenstandsbereich der Ethik, dem Menschen als bio-psycho-sozialem Wesen und dessen Moral, wird argumentiert, dass die Sozialwissenschaften die zentralen empirischen Basiswissenschaften der Ethik darstellen. Im zweiten Abschnitt, der sich mit wissenschaftstheoretischen Überlegungen zum Verhältnis von Ethik, Empirie, Methodologien und Theorie und praktischen Beispielen der Integration empirischen Wissens befasst, wird nach den Ursachen für (...) das erkennbare Spannungsverhältnis zwischen Sozialwissenschaften, allgemeiner und angewandter Ethik gefragt, welches sich in der noch zu definierenden empirischen Ethik anders darstellt als in der traditionellen angewandten Ethik. Wie eine Bio- Ethik aussehen könnte, die diese Qualitätskriterien aufnimmt und in ihrem Feld fruchtbar macht, wird abschließend beschrieben. (shrink)

Debido a que se encuentran publicaciones en las que bioética y ética médica significan lo mismo, el artículo examina algunas razones de comparación para establecer semejanzas y diferencias. El parámetro seguido es el de la relación entre la ética aplicada y la ética profesional, y al respecto de ambas, el criterio de práctica humana. Otro parámetro es que la moralidad brota del interior de las prácticas, por lo que una diferencia fundamental entre la bioética y la ética médica reside en (...) el tipo de práctica a la que remite cada una. (shrink)