Ilpo Helén

Publics and biobanks: Pan-European diversity and the challenge of responsible innovation

This article examines public perceptions of biobanks in Europe using a multi-method approach combining quantitative and qualitative data. It is shown that public support for biobanks in Europe is variable and dependent on a range of interconnected factors: people’s engagement with biobanks; concerns about privacy and data security, and trust in the socio-political system, key actors and institutions involved in biobanks. We argue that the biobank community needs to acknowledge the impact of these factors if they are to successfully develop and integrate biobanks at a pan-European level.

Technics over life: risk, ethics and the existential condition in high-tech antenatal care

The subject of this paper is the problem of selective abortion brought about by advanced techniques of foetal diagnosis. The issue of abortion today is analysed as an outcome and illustration of the emerging ‘vital politics’. The paper explores the technicality of this new form of bio-power, and the ethical practice and forms of subjectivity it imposes. Two main points are raised. First, it is argued that the implementation of state-of-the-art foetal diagnosis in clinical practice and maternity care is underlain by the rationales of control and experimentation. The ideas of risk and the dividual are introduced as the epistemic cornerstones of this practice of high-tech reproductive medicine according to the above rationales. Second, the paper argues that foetal diagnosis in antenatal care is characterised by an ethical split. This emerges when the machinery of reproductive health care withdraws into a position of technical responsibility and leaves the choice, and the ethical responsibility, concerning medical operations (selective abortion, in particular) to the pregnant woman. This suggests that high-tech biomedicine tends to individualise risks and to impose a form of ethical individuality characterised by the demand for reflexivity through personal risk assessment, producing the anxiety generated by existential responsibility.

From Protection of Privacy to Control of Data Streams: A Focus Group Study on Biobanks in the Information Society

Most people in Europe do not know what biobanks are. In this study, public perceptions of biobanks and collection of genetic and health data were analyzed in relation to other technologies and digital networks where personal information is compiled and distributed. In this setting, people contextualized biobanks in line with their daily experiences with other technologies and data streams. The analysis was based on 18 focus group discussions conducted in Austria, Finland and Germany. We examined the ways in which people frame and talk about problems and benefits of information distribution in digital networks and biobanks. People identify many challenges associated with collection of personal data in the information society. The study showed that instead of privacy – which has been the key term of bioethical debates on biobanks – the notions of control and controllability are most essential for people. From the viewpoint of biobanks, issues of controllability pose challenges. In the information society, people have become accustomed to controlling personal data, which is particularly difficult in relation to biobanks. They expressed strong concerns over the controllability of the goals and benefits of biobanks.

Shepherding desire : Sexual health promotion in finland from the 1940s to the 1990s

In this article, sexual policy in Finland is analysed through two historical cases: first, contraception guidance and medical-psychological marital counselling at the Family Federation of Finland’s (Väestöliitto) dispensaries from the late 1940s to the early 1960s, and, second, comprehensive sex education for adolescents from the 1970s to the 1990s. The study focuses on two modes of sexual government, namely the pastoral mode, which subjects individuals to expertise on sexuality, and self-government based on self-inspection. It is emphasized that in Finland sexuality has been problematized and governed in the context of medicine and health care. The most noticeable dissimilarity between the two settings is that in the former the locus of problematization of the sexual self is sexual adjustment in the nuclear family and marriage, while in the latter sexuality is defined in an individualistic manner, and the core question concerns personal sexual liberation. However, in both settings an understanding of sexuality as one’s own initially developed in the context of problems of reproductive health and contraception. In addition, women and female sexuality remained the focus of sexual government throughout the period under study.

Biological citizenship across the borders: politics of DNA profiling for family reunification

This paper aims to broaden the view of the implications of advanced biomedical technology to biopolitical subjectivity through an analysis of the use of DNA profiling for family reunification of immigrants in Finland and Germany. By exploring complicated connections of biological traits to both national and ‘post-national’ modes of citizenship, the paper demonstrates that ‘biology’ plays an important role in decision-making on citizenship rights and inclusion and exclusion in the nation-state even today. In family reunification through DNA testing, biological criteria may back up ‘post-national’ citizenship and the personal rights of the asylum seeker or immigrant, since the biological tie to his or her family (and not to the nation) provides the basis for the right to enter the country and stay there. However, the ways DNA testing is used by immigration authorities tend to narrow down the applicants rights by demarcating the family to a biological nuclear family model, by focusing DNA testing in an ethnically biased manner, and by potentially jeopardizing the applicants informational self-determination in collecting DNA samples and in handling DNA information.

Review Essay : Welfare and its Vicissitudes:

Nikolas Rose and Mitchell Dean have balanced the books of the analytics of government, although not conclusively. The school of social analysis they represent began to gain a foothold, especially in Australia and Britain, in the mid1980s, and by the end of the century it had matured as a framework and research programme (cf. Rose p. 7; Dean p. 3 ; also Burchell et al. 1991 ; Barry et al. 1996 : Hanninen 1998; Dean & Hindess 1998). The approach is outstanding in foucauldianism of the social

Erratum : Publics and biobanks: Pan-European diversity and the challenge of responsible innovation (European Journal of Human Genetics (2012) DOI: 10.1038/ejhg.2012.104)

Since the publication of this article one of the authors, Herbert Gottweis, has asked for an additional affiliation to be added. This has now been added and the amended article appears in this issue. The HTML and online PDF versions have also been amended and now carry the additional affiliation. European Journal of Human Genetics (2013) 21, 121 & 2013 Macmillan Publishers Limited All rights reserved 1018-4813/13

Symptoms, signs, and risk factors: Epidemiological reasoning in coronary heart disease and depression management

In current mental health care psychiatric conditions are defined as compilations of symptoms. These symptom-based disease categories have been severely criticised as contingent and boundless, facilitating the rise to epidemic proportions of such conditions as depression. In this article we look beyond symptoms and stress the role of epidemiology in explaining the current situation. By analysing the parallel development of cardiovascular disease and depression management in Finland, we argue, firstly, that current mental health care shares with the medicine of chronic somatic conditions an attachment to risk factor epidemiology, which accentuates risk and prevention in disease management. However, secondly, due to the symptom-based definitions of psychiatric conditions, depression management cannot differentiate properly between symptoms, signs and risk factors such as, for example, cardiovascular medicine, but treats symptoms as signs or risk factors in contexts of treatment and prevention. Consequently, minor at-risk conditions have become difficult to separate from proper cases of depression.

Book Reviews : William Simon: Postmodern Sexualities. London & New York. Routledge, 1996. Steven Seidman (ed.): Queer Theory/Sociology. Cambridge, Mass. & Oxford: Blackwell, 1996

One could say that recent research, to a large degree, represents a type of marking. Researchers relate partly to earlier work by Veblen and Simmel and partly to market research in this case by marking their dissociation from it. Campbell and Falk begin their book with the question: why should someone not directly involved in marketing do research on shopping? Their answer: because shopping is not only about buying. Another question involves the major changes in shopping and consumption resulting from the electronic trade. What will happen with analyses of the tactile, public aspects of shopping the shopper’s gaze and public life with everything involved in the societal control of consumption, when we all shop at home using the computer? Swedish families buy food from Germany via the Internet. Buying is done