Aaro Tupasela

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.

Locating tissue collections in tissue economies—deriving value from biomedical research

Abstract This paper examines diverging notions of value in the use of tissue sample collections and other information resources using a case study of hereditary colorectal cancer research in Finland. Recent science and technology policies that emphasize the production of commercial value derived from tissue sample collections are challenged by varying conceptions of value, as well as structural factors that relate to the combination of different public population information systems in the Finnish research system. Such challenges reflect a tension in the economic aspirations of the ideology of the knowledge society in relation to the goals of national health care policies, as well as the role of the state as a mediator of knowledge production and commercial development.

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.

Ethics Policies and Ethics Work in Cross-national Genetic Research and Data Sharing: Flows, Nonflows, and Overflows

In recent years, cross-national collaboration in medical research has gained increased policy attention. Policies are developed to enhance data sharing, ensure open-access, and harmonize international standards and ethics rules in order to promote access to existing resources and increase scientific output. In tandem with this promotion of data sharing, numerous ethics policies are developed to control data flows and protect privacy and confidentiality. Both sets of policy making, however, pay limited attention to the moral decisions and social ties enacted in the everyday routines of scientific work. This paper takes its point of departure in the practices of a Danish laboratory with great experience in international collaboration regarding genetic research. We focus on a simple query, what makes genetic material and health data flow, and which hopes and concerns travel along with them? We explore what we call the flows, the nonflows, and the overflows of material and information, and we document the work producing the flows of health data and biomaterial. We call this work “ethics work” and argue that it is crucial for data sharing though it is rarely articulated in ethics policies, remains inadequately funded, and lacks acknowledgment in policies promoting international data sharing.

Ethical sharing of health data in online platforms – which values should be considered?

Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology (ICT) platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses ethical challenges when data is disclosed and shared even if for scientific research purposes.With this in mind, the Science and Values Working Group of the COST Action CHIP ME ‘Citizens Health through public-private Initiatives: Public health, Market and Ethical perspectives’ (IS 1303) identified six core values they considered to be essential for the ethical sharing of health data using ICT platforms. We believe that using this ethical framework will promote respectful scientific practices in order to maintain individuals’ trust in research.We use these values to analyse five ICT platforms and explore how emerging data sharing platforms are reconfiguring the data sharing experience from a range of perspectives. We discuss which types of values, rights and responsibilities they entail and enshrine within their philosophy or outlook on what it means to share personal health information. Through this discussion we address issues of the design and the development process of personal health data and patient-oriented infrastructures, as well as new forms of technologically-mediated empowerment.

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.

From gift to waste: changing policies in biobanking practices

Traditionally the analysis of biomedical discourses surrounding biobanking has focused on the role of donation and gift giving as central aspects related to the procurement and use of tissue samples. More recently, studies have looked at the political underpinnings of building national collections of tissue samples. These national projects draw increasingly on a discourse of waste and efficiency as a way of legitimising activities. This paper draws attention to the way new arguments draw from environmental discourses in an attempt to reframe contentious ethical and legal issues in a more favourable light. Attempts to evoke notions of efficiency draw on a different set of persuasive techniques to foster support for large research and development ventures involving public-private partnerships, but at the same time limit public debate. Copyright , Beech Tree Publishing.

Shortcut to success? Negotiating genetic uniqueness in global biomedicine

Since the sequencing of the human genome, as well as the completion of the first Human Genome Diversity Project, the benefits of studying one human population over another has been an ongoing debate relating to the replicability of findings in other populations. The leveraging of specific populations into research markets has made headlines in cases such as deCode in Iceland, Quebec Founder Population, and Generation Scotland. In such cases, researchers and policy makers have used the genetic and historical uniqueness of their populations to attract scientific, commercial and political interest. In this article, we explore how in countries with population isolates, such as Finland, the researchers balance considerations relating to the generalization and replicability of findings in small yet unique research populations to global biomedical research interests. This highlights challenges related to forms of competition associated with genetics research markets, as well as what counts as the ‘right’ population for genetic research.

State Responsibility and Accountability in Managing Big Data in Biobank Research: Tensions and Challenges in the Right of Access to Data

Within the European context the Data Protection Directive (Directive 95/46/EC) maintains an important role in current legal debates on the rights and obligations different stakeholders have in the processing of personal data. Biobanking and data sharing infrastructures pose new ethical and legal dilemmas in the interpretations we uphold with regard to the processing of personal data. This chapter examines the challenges associated with the data subject’s right of access to data in Finnish biobanking. The Data Protection Directive provides provisions for individuals to confirm “as to whether or not data relating to him are being processed”. Finland’s recent Biobank Act (688/2012) has raised concerns since it also requires biobanks to provide, upon request, information regarding data which may have clinical (actionable) relevance for the individual’s personal health. There is, however, no governance mechanism in place through which common standards and practices could be implemented. As a result the extension of the right to access data and mandating biobanks to relate significance of results to personal health has become a major concern for biobankers in Finland. The management of data, research results and incidental findings in biobanks is becoming, however, an increasingly significant challenge for all biobanks and the countries which are in the process of drafting policy and regulatory frameworks for the management and governance of big data, public health genomics and personalised medicine. The Finnish case highlights the challenges that many states are increasingly facing across Europe and elsewhere in terms of how to govern and coordinate the management of biomedical big data.