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Negotiating local and global requirements in biomedical research; the case of biobanking

Final Report Summary - GLOBLOC BIOBANKS (Negotiating local and global requirements in biomedical research; the case of biobanking)

Science has long had broader social functions than producing knowledge alone. This is particularly true for medical research, which is associated with various social and economic benefits. To a large degree, these other benefits have inspired the set-up of large infrastructures for medical research, including facilities that allow the collection of large amounts of data and body material from large groups of people. On the one hand, such collection infrastructures, popularly known as biobanks, are imagined as building blocks for global research networks, based on the idea that the more subjects are included in a research project, the more (statistically) significant its results. On the other hand, investments in biobanks are often based on the hope that they contribute to solving local problems and producing local benefits. An important question for biobanks is therefore how to balance the requirements of local and global objectives. To gain better understanding of the challenges this balancing act faces, this project analyzed how different objectives and the balance between the global and the local are reflected in the set-up of population-based research infrastructures. It looked at the research design, organization, aims and ambitions of three specific infrastructures; the Framingham Heart Study in the United States, the Singapore Tissue Network in Singapore, and the Million Death Study in India. These were analyzed by interviewing researchers and policy-makers involved in the projects and reading documents that describe the projects’ organization and operation.
Each of these infrastructure projects has its own specific history, aims, and means for selecting and studying a population of interest, which are based on the specific medical questions they seek to answer, but also specific cultural ideas and preferences in relation to science, health, and welfare. The different biobanks thus reflect how the things modern societies consider important for collective well-being influence the ways we try to understand health and disease – and the other way around.
The American Framingham Heart Study started in the late 1940s with the aim to unravel what caused people to get heart disease. The study used community and family ties in a small town to get people involved. It set out to find what made individuals prone to get heart disease and primarily investigated measurable personal behavior. It found ‘risk factors’ related to individual lifestyle. Today the study continues to refine these factors, using the family relations in its population to also find genetic risks. It locates responsibility for health mainly at the individual level, paying less attention to potential socio-economic risks.
The Singapore Tissue Network was established as a central storage for human body material collected in medical research in Singapore, with the hope that it would contribute to the economic objectives of medical research. But while many initiatives were taken to help the collection grow, researchers were often unsure of the collection’s usefulness for research. The medical information they considered necessary for understanding the materials were mostly kept separate. Since researchers were not using the facility, the government decided to close it; the collection, and with it the benefits that could be produced, was considered too abstract.
The Million Death Study seeks to get insight in the unknown causes of death for the majority of India’s population. The study uses established census infrastructures to ask relatives of the deceased about symptoms prior to death. These symptoms are analyzed to produce specific diagnoses that produce overviews of what people in India die from. These overviews suggests that Indians increasingly die from non-infectious diseases, but the resulting focus on research and intervention on these diseases carries the risk of marginalizing poorer segments of India’s population and failing to address structural deficiencies and inequalities in health care delivery.
Comparison between these cases provides insight into the various aims medical research can have and how these aims are related to the ways research projects and infrastructures are designed, and governed. Not only does research have additional economic and public health aims, research designs also reflect particular cultural wishes for a collective future and understandings of who can contribute and profit from the products of research. Comparison also raises questions about what would be required to arrive at global harmonization of research efforts that serve distinctive social goals. The different infrastructures relate to potential global significance and global connections differently; while the Framingham Heart Study is globally held to be an example of how to study diseases in a population, the Singapore Tissue Network aimed to get plugged into a global economy of biotechnology and pharmaceuticals, while the hope was that the approach of the Million Death Study could be part of global public health initiatives in other poor countries. This raises an important question: what are the purposes of medical research, beyond knowledge production, when thought about in international contexts?
The project thus brings forward new insights into the way infrastructures for medical research are part of a social environment, and are shaped by social and political preferences. For population studies, this implies that particular choices are made about how to define a population and for which outputs to strive. As a consequence, questions about the just distribution of resources in medicine are inseparably part of the funding and organization of medical research. Medical research should therefore be responsive to and inclusive of social concerns, including those of traditionally marginalized groups. For policy-makers and research administrators the results of this project thus imply a responsibility to be sensitive of the social significance of organizing research in particular ways. Additionally, wider public debates on biomedical research should move beyond the traditional preoccupations of bioethics with individual donor consent and sample ownership and question what lies behind the ‘value’ that is often assumed to be self-evident in medical research.

Dr Erik Aarden, Department of Science and Technology Studies, University of Vienna, erik.aarden@univie.ac.at +43 1 4277 49626