Mette N. Svendsen

The Social Life of Genetic Knowledge: A Case-Study of Choices and Dilemmas in Cancer Genetic Counselling in Denmark

This article explores the social life of genetic knowledge in the context of cancer genetic counselling in Denmark. I focus on a specific case that occurred during my study of the processes through which genetic risk profiles are produced and through which knowledge of genes and kinship comes to appear both meaningful and contestable to counsellees. The analysis illuminates how participants in cancer genetic counselling experience gaps between, on the one hand, genetic information about kinship and predispositions to hereditary disease and, on the other hand, social experiences of kinship and risks. I argue that this gap constitutes a space for agency in which people make their own connections and interpretations. It is in this space that new social relations and understandings of bodies, health and kinship are crafted. Following the social life of genetic knowledge highlights how knowledge is practiced through social relations and how knowing is grounded in particular interactions and situated concerns.

Beyond informed choice: prenatal risk assessment, decision-making and trust

In 2004, prenatal risk assessment (PRA) was implemented as a routine offer in Denmark, in order to give all pregnant women an informed choice about whether to undergo prenatal testing. PRA is a non-invasive intervention performed in the first trimester of pregnancy and measures the risk of a fetus having Downs syndrome or other chromosomal disorders. The risk figure provides the basis for action, i.e. the decision about whether or not to undergo invasive fetal testing via the maternal route (amniocentesis or chorionic villus sampling), which, however, involves the risk of inducing a miscarriage. On the basis of ethnographic fieldwork in an ultrasound clinic in Denmark and interviews with pregnant women and their partners, this paper investigates how ideals such as autonomy and non-directiveness are practised in processes of decision-making. We view such ideals as forming social practice rather than neutral instruments to reach a certain goal. Focusing on one couples trajectory through the clinical practices of PRA and the process through which a decision is reached, we call into question the assumption that more choice and more objective information is a source of empowerment and control. We make evident how decisions are made through a complicated process of meaning-making, which emerges through the relationship between professionals, the clinical setting and the social life of the couples. In the face of complex risk knowledge, PRA users are reluctant to make choices and seek to re-install authority in the health professionals. However, 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 fetus. It is argued that PRA performs a form of government that works not through compulsion or persuasion but through choice. An ethic of a shared responsibility for PRA and its outcome between pregnant women and health professionals would be more in agreement with how decisions are actually made.

Genetics and prevention: a policy in the making.

Abstract This article explores the processes 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.

Potentializing the Research Piglet in Experimental Neonatal Research

This paper explores the socio-moral-material practices by which the piglet is imbued with potential for human health by making it a substitute for the preterm infant in need of treatment. Based on fieldwork in a Danish perinatal pig laboratory, we view the experimental practice as a sacrifice and argue that it is characterized by two forms of exchange: a calculative exchange that defines an absolute moral difference between humanity and animality and constitutes the piglet as a raw material of science, and a corporeal exchange by which the piglet appears as a sentient substitute belonging to the same collective as the researchers. By focusing on the interaction between these forms of exchange, we highlight the existential aspects of the sacrificial practice and illuminate the many identities of both piglets and researchers produced in the interwoven processes of making, unmaking, and remaking piglets. We suggest that creating space for corporeal exchange and yet taming its power is essential to potentializing piglets.

Better safe than sorry: a long-term perspective on experiences with a false-positive screening mammography in Denmark

Breast screening with mammography can be contentious because of its unintended harmful repercussions. A false-positive mammography is one of the most frequent harms and can encompass both short- and long-term psychosocial implications. Based on eight qualitative in-depth interviews with women who reported negative psychosocial consequences following a false-positive mammography, this article explores how women in the study experienced having a false-positive and how these experiences manifested themselves in a long-term perspective. This article draws on data from in-depth interviews with eight women in Denmark, in 2009, who had had false positive screening results approximately 5 years before the interview. Despite all participants having a self-perception of low risk of breast cancer, they regularly participated in screening. When receiving the recall letter and in the interim, the women perceived themselves as and identified with cancer patients and feared dying. When further investigation indicated that they did not have cancer, the women in the study treated this as an acquittal and expressed gratitude for the screening programme. However, their confrontation with an initial positive breast cancer diagnosis created concerns that the women still experienced and had to manage 4 to 5 years after the initial false-positive mammography. We argue that the psychosocial consequences of having the false-positive mammography contributed to the women’s view of themselves as being subjects at constant risk. However, the women did not blame the medical technology for its inaccuracy and inflicted worries, and the false-positive mammography did not lead to them losing confidence in screening. The women in the study strove for means to control the latent anxiety that was introduced with the false-positive mammography, by continuously seeking medical confirmation of their well-being and desiring more frequent screening.

Between Neutrality and Engagement: A Case Study of Recruitment to Pharmacogenomic Research in Denmark

Post-genomic research relies on blood samples and health information from great numbers of individuals as well as on access to medical records. Studies of collecting and banking bio-resources have increasingly focused on the policy and commodification issues that arise when human DNA enters the information economy. Yet, what has been given much less attention is the process through which citizens are recruited to contribute to post-genomic research. This article analyses practices of recruiting psychiatric patients to a pharmacogenomic research centre in Denmark. It argues that recruitment activities may be conceived as interpellation practices that ‘hail’ individual patients and ask them to place themselves in relationships to other citizens and state institutions by giving researchers access to blood samples, medical records and sensitive life-and-illness information. The interpellation practices studied demonstrate a tension between techniques that operate through distance (sending out letters with information and consent forms) and techniques that operate through presence (making phone calls to patients). These techniques are not simply seen as contrasting ethical conducts, but as complementary and coexisting ways of constituting spatial and social state–citizen relationships.

Humanity at the Edge: The Moral Laboratory of Feeding Precarious Lives

At the heart of anthropology and the social sciences lies a notion of human existence according to which humans and animals share the basic need for food, but only humans have the capacity for morality. Based on fieldwork in a pig laboratory, a neonatal intensive care unit (NICU), and a dementia nursing home, we follow practices of feeding precarious lives lacking most markers of human personhood, including the exercise of moral judgment. Despite the absence of such markers, laboratory researchers and caregivers in these three sites do not abstain from engaging in questions about the moral status of the piglets, infants, and people with dementia in their care. They continually negotiate how their charges belong to the human collectivity and thereby challenge the notion of ‘the human’ that is foundational to anthropology. Combining analytical approaches that do not operate with a fixed boundary between human and animal value and agency with approaches that focus on human experience and virtue ethics, we argue that ‘the human’ at stake in the moral laboratory of feeding precarious lives puts ‘the human’ in anthropology at disposal for moral experimentation.

Negotiating Moral Value A Story of Danish Research Monkeys and Their Humans

In 2004, twelve capuchin monkeys were moved from the labs of the Danish psychiatric hospital of Sankt Hans to a small private-owned zoo in another part of Denmark in order to be rehabilitated. These monkeys were the last nonhuman primates to be used as research animals in Danish biomedical laboratories. The normal procedure would be to kill research animals after the termination of an experiment; in this case, however, a decision was reached to close down the lab. The moral landscape had changed, and it was no longer considered acceptable to use nonhuman primates in Danish biomedicine. From being considered a biological resource serving as a model of man, the monkeys had become moral subjects with a claim to a life suiting their natural needs. Simultaneously, the monkeys became instrumental in creating moral legitimacy for the actors involved in their rescue. What we see is an instance of pathfinding in a changing moral landscape where actors negotiate nonhuman primate nature as they create new moral positions for themselves.

Selective Reproduction: Social and Temporal Imaginaries for Negotiating the Value of Life in Human and Animal Neonates

This article employs a multi-species perspective in investigating how lifes worth is negotiated in the field of neonatology in Denmark. It does so by comparing decision-making processes about human infants in the Danish neonatal intensive care unit with those associated with piglets who serve as models for the premature infants in research experiments within neonatology. While the comparison is unusual, the article argues that there are parallels across the decision-making processes that shape the lives and deaths of infants and pigs alike. Collectivities or the lack thereof as well as expectations within linear or predictive time frames are key markers in both sites. Exploring selective reproductive processes across human infants and research piglets can help us uncover aspects of the cultural production of viability that we would not otherwise see or acknowledge.

How do we collaborate? Social science researchers’ experience of multidisciplinarity in biomedical settings

In September 2009, a group of social scientists from the United Kingdom, Denmark, the Netherlands, Austria, the United States and Canada met in London to discuss their experiences with fieldwork in biomedical settings, and other forms of interdisciplinary collaboration. Rather than ‘trouble shoot’, however, the objective of the workshop was to explicate the effects that such interdisciplinary collaborations have on our work and our self-understandings as social scientists. Particular attention was paid to the effects of tacit disciplinary hierarchies and (mis)communication across disciplinary and epistemological boundaries. This article summarises the main issues identified at, and main insights obtained from, the workshop, both pertaining to particular stages of carrying out fieldwork (‘getting access’, ‘inside the field’ and ‘outside again’), and to the dynamics of social science research in biomedical settings more generally.