Karoliina Snell

Attitudes towards biomedical use of tissue sample collections, consent, and biobanks among Finns

Aims: To ascertain the attitudes towards the use of existing diagnostic and research samples, the setting up of a national biobank, and different types of informed consent among Finns. Method: A population survey of 2,400 randomly selected Finns aged 24—65 was conducted at the beginning of 2007. Results: A total of 1,195 responses (50%) were received after one reminder. Of the respondents, 83% said that they had little or no knowledge of what biobanks were. Despite this, 77% regarded the setting up of a national biobank in a positive light. One third (34%) would not attach any conditions on their consent, while 42% said that it was important to regain consent when the new study contains diverging steps. One third (30%) wanted consent to be regained for every new research project, and 44% would like to decide what type of research their samples would be used for if they were included in a national biobank. One third of both men and women approved of the use of their samples in research involving private enterprises. Conclusions: In general, Finns were positive toward the setting up of a national biobank, as well as public—private partnerships, even though they considered their knowledge of biobanking to be limited. This, however, did not mean that they were indifferent to the use of their samples, but most wanted the ability to control how their samples are used.

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.

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.

Constructing populations in biobanking

This article poses the question of whether biobanking practices and standards are giving rise to the construction of populations from which various biobanking initiatives increasingly draw on for legitimacy? We argue that although recent biobanking policies encourage various forms of engagement with publics to ensure legitimacy, different biobanks conceptualize their engagement strategies very differently. We suggest that biobanks undertake a broad range of different strategies with regard to engagement. We argue that these different approaches to engagement strategies are contributing to the construction of populations, whereby specific nationalities, communities, societies, patient groups and political systems become imbued or bio-objectified with particular characteristics, such as compliant, distant, positive, commercialized or authoritarian. This bio-objectification process is problematic in relation to policy aspirations ascribed to biobanking engagement since it gives rise to reified notions of different populations.

National interests and international collaboration: tensions and ambiguity among Finns towards usages of tissue samples

Recent trends in biobanking indicate that the practices associated with the collection and use of human tissue samples and related health information are increasingly becoming premised on networks of biobanks. These networks and partnerships often involve international collaborations, as well as public–private partnerships. This article reports on the results of a study of peoples attitudes towards biobanking and the biomedical use of tissue samples in Finland. Three approaches were used to study these attitudes: a population-based survey, focus group interviews among members of patient organizations and short interviews with research participants. In particular, we look at the attitudes of respondents in these three studies towards the use of tissue samples and use them as a catalyst to discuss two dimensions of biomedical research: public/private and domestic/international. Our discussion highlights how notions of value related to the use of tissue samples vary and provide contrasting perspectives and ambiguity that people may have towards various types of research partnerships and the benefits that may arise from them.

Finnish people's attitudes towards biomedical research and its sponsorship

The purpose of the research was to study Finnish peoples attitudes towards biomedical research and whether the research sponsor makes a difference to those attitudes. A survey questionnaire was sent to a random sample of 25-64 years old. Respondents had a positive attitude towards biomedical research and there were only small variations by population group. When asked whether ones own clinical blood samples could be used in scientific biomedical research, 84 per cent of the respondents would allow it. The most important reasons for giving routinely collected samples to a biobank were altruistic. Attitudes were strongly dependent on the sponsor of the research. Domestic research was looked at more positively than international research. Whether research was made by a public or private actor had less impact. The results suggest that people want to be research participants to help such research of their own free will, and to choose whom they help. This has an impact on the way participants are informed, on the criteria used by ethics committees and other research regulators, and also on transparency and access to research results.

Beyond and within public engagement: a broadened approach to engagement in biobanking

Social studies on biobanking have traditionally focused on public engagement, that is, engagement with donors, patients and the general public as an important factor of sustainability. In this article, we claim that, in order to fully understand the way biobanks work, it is necessary to pay attention to a number of other actors, which have an equal, if not greater, impact on their practices and strategies. This means taking a broadened approach to biobank engagement. By using data collected from interviews with different biobank experts based in five different countries (UK, Canada, Finland, Spain and Iceland), we identify seven communities, including the public, that emerge as relevant. Such relationships condition the way biobanks develop, act and plan. The discussion illustrates how the relationships with those seven communities are articulated. We conclude that there is a need for a broadened approach to biobank engagement in order to understand biobank sustainability.

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