Representing and intervening: 'doing' good care in first trimester prenatal knowledge production and decision-making.

This article investigates processes of knowledge production and decision-making in the practice of the first trimester prenatal risk assessment (FTPRA) at an ultrasound clinic in Denmark. On the basis of ethnographic material and interviews with professionals facilitating FTPRAs in Denmark, we draw attention to the active engagement of health professionals in this process. Current professional and policy debate over the use of prenatal testing emphasises the need for informed choice making and for services that provide prospective parents with what is referred to as 'non-directive counselling'. Studies focusing on professional practice of prenatal counselling tend to deal mainly with how professionals fail to live up to such ideals in practice. In this article we extend such studies by drawing attention to practices of care in prenatal testing and counselling. In doing so, we identify three modes of 'doing' good care: attuning expectations and knowledge, allowing resistance and providing situated influence in the relationship between the pregnant woman and the professional. Such practices may not be seen as immediately compatible with the non-directive ethos, but they express ways of reducing emotional suffering and supporting a pregnant woman's ability to make meaningful choices on the basis of uncertain knowledge. As such, these practices can be seen as representing another (caring) solution to the problem of paternalism and authoritarian power. In opposition to an ethics aiming at non-interference (non-directiveness) such modes of doing good care express an ethics of being locally accountable for the ways in which programmes of prenatal testing intervene in pregnant women's lives and of taking responsibility for the entities and phenomena that emerge through such knowledge production.

OECD guidelines on open access: commercialization in disguise?

The Organisation for Economic Co-operation and Development (OECD) has published a new set of principles and guidelines to promote open access to datasets and results from publicly funded research. However, there is reason to think twice about the implications of making demands for transparency and open access for publicly funded research only. How will such demands affect incentives and research agendas? Might this new regulation of publicly funded research have undesirable effects on the quality and value of research? Placing the OECD guidelines in a broader context of research regulation, we argue that they might provide a further push toward collaboration with commercially sponsored research and reinforce incentive structures that favour the creation of commercial value.

Resisting decay: On disposal, valuation, and care in a dementia nursing home in Denmark.

This paper approaches institutionalized dementia care as a site of societal disposal, valuation, and care for human life. Drawing upon six weeks of ethnographic fieldwork and ten qualitative interviews carried out in a Danish dementia nursing home in 2014, we analyze how nursing home staff, through everyday care, uphold the value of life for residents in severe mental and physical decline. We argue that life's worth is established when residents gain qualities of personhood and agency through substitution processes carried out by staff. Yet the persistent absence of conventional personhood and autonomous agency in residents (i.e. capacities for memory, consciousness, language, and mobility) evokes experiences of ambiguity in staff and relatives of residents. We close the article with a discussion of this ambiguity and the significance of the nursing home as care institution in the welfare state. Dementia care, we propose, is not only about preserving the lives of people with dementia. At stake in the daily care practices around severely disabled residents in the nursing home is the very continuance of the main principles of the welfare society.

The ethics of functional genomics: same, same, but different?

Respect for human life--a notion of worth uniting all members of the human race--constitutes a sense of anthropocentrism that has long been the justification for the enrollment of animals in experimentation executed to develop therapies to alleviate human suffering. Currently, however, advances in functional genomics are causing a qualitative transformation of the rationale for medical research performed on animals. The notion of human distinctness is being fundamentally challenged when gene sequences similar to those found in humans are identified in different species. In this Opinion article, we would like to highlight an inherent tension brought about by the current developments in functional genomics: a tension between the scientific and the ethical status of gene sequences. Is it reasonable to argue that they are the same for all practical purposes but different in ethical status?

Transforming social contracts: the social and cultural history of IVF in Denmark.

The introduction of IVF in Denmark was accompanied by social transformations: contestations of medical authority, negotiations of who might access reproductive biomedicine and changes in individual and social identity due to reproductive technologies. Looking at the making of Danish IVF, this article sketches its social and cultural history by revisiting the legal, medical, technological and social developments that characterized the introduction of IVF in Denmark as well as by contextualizing the social research on the uses and impacts of IVF carried out in the 1980s and 1990s within these developments. The making of Danish IVF is presented as a transformative event in so far as it changed Denmark from being a society concerned about the social consequences of reproductive technologies to a moral collective characterized by a joined sense of responsibility for Denmark's procreative future.

Providing solutions--defining problems: the imperative of disease prevention in genetic counselling.

Common sense states that problems make people look for solutions. This article proposes the contrary, i.e. that solutions provide the framework within which certain problems can be stated and handled. Drawing on observations of cancer genetic counselling in Denmark and official recommendations concerning the practice of genetic counselling, this article explores how the new prophylactic possibilities become the lens through which risk factors are identified and defined as problems that require action. In particular, the question of how new possibilities to prevent hereditary disease challenge the traditional non-directive ethos of clinical genetics provides the occasion to analyse governmentality processes in clinical genetic dialogues. The article argues that an imperative of choosing disease prevention in genetic counselling transforms the notion of non-directiveness as well as the notions of autonomy and informed consent. The transforming event is the transmission of expert knowledge on genetic risk from counsellor to counsellee. This process of knowledge transmission creates autonomous individuals who, through the medium of choice, consent voluntarily to take personal responsibility for themselves and their relatives. Conceived as a health technology, genetic counselling is a practice through which hegemonic knowledge claims about saving lives by acting responsibly is created. Disease prevention as the solution to increased risks comes to stand out as the right way of relating to oneself, the family, and society.

In the mood for science: a discussion of emotion management in a pharmacogenomics research encounter in Denmark.

We investigated the practices through which patients in treatment for depression become research subjects in pharmacogenomics research in Denmark. On the basis of an ethnographic study of research subject participation taking place between May 2006 and August 2007, we conceptualized the efforts made by both researchers and research subjects at the research encounter as emotion management, through which the raw material of pharmacogenomics research is created. The study demonstrates that management of emotions in the research encounter is necessary to secure high quality data and simultaneously produces new relations of exchange - exchanges we view as important fuel in the generation of biovalue. In bringing this analysis into dialogue with the bioethical emphasis on altruism, we challenge the assumption that research participation comes about by linking already available, that is, 'altruistic', individuals to research institutions. We suggest that the emotion management taking place in the research encounter and the relations of exchange established through it actualize behavior we recognize as 'altruistic'. We conclude that there is no morally relevant conflict between 'altruistic behaviour' and the production of exchange relations.

Genetics and prevention: a policy in the making.

This article explores the process through which the advances of genetic research are incorporated into public health care in Denmark. Drawing on ethnographic fieldwork in cancer genetic counselling, the implementation of new medical advances is investigated by following the establishment of a policy on informing relatives at risk of hereditary cancer. This case material provides the occasion to examine how policies are shaped in a governmental process through which different actors seek to establish a common goal for a specific health practice. The struggle to define such a goal implies a struggle to define where to draw the line between health and disease and what makes up a healthy person in the context of genetic knowledge. The authors argue that in the process of establishing a policy in the field of cancer genetics the imperative of prevention comes to provide the framework within which an ethics of rights and responsibilities is constituted and the target group of cancer genetic counselling defined. This ethics is not determined by or inherent in genetic technology itself, but constituted in a social process and therefore negotiated within pre-existing frameworks of understanding in professional practice.

[Social and family considerations in genetic counselling]. / Sociale og familiemaessige problemstillinger ved genetisk rådgivning.

Genetic knowledge can be viewed as an important tool in the prevention of hereditary disease. This article discusses the social issues that the link between genetics and prevention raises in cancer genetic counselling and testing. In particular, the moral dilemmas which health professionals and patients face in relation to disclosing genetic information to kin are described. The authors argue that questions about disclosing information and balancing autonomy and responsibility are not only ethical questions but biopolitical issues.

The meaning of eugenics: reflections on the government of genetic knowledge in the past and the present.

The recent development of molecular genetics has created concern that society may experience a new eugenics. Notions about eugenics and what took place in the 1930s and 1940s are actively shaping questions about which uses of new genetics should be considered illegitimate. Drawing upon a body of historiographical literature on Scandinavian eugenics, this paper argues that the dominant view of eugenics as morally and scientifically illegitimate is not tenable when it comes to the uses of compulsion, political motivation, and scientific acceptability. In spite of a general condemnation of eugenics, health authorities today are trying to prevent individuals with deviant behavior from reproducing or at least from rearing children. This may not be argued with reference to the risk of transmitting defective genes, but rather the risk of producing undesirable social problems. Drawing on a Foucauldian approach, the paper concludes that eugenics and new genetics should be seen as two historically specific forms of biopower.