Abstract
During the past ten years the complex ethical, legal and social issues (ELSI) typically surrounding large-scale genetic biobank research initiatives have been intensely debated in academic circles. In many ways genetic epidemiology has undergone a set of changes resembling what in physics has been called a transition into Big Science. This article outlines consequences of this transition and suggests that the change in scale implies challenges to the roles of scientists and public alike. An overview of key issues is presented, and it is argued that biobanks represent not just scientific endeavors with purely epistemic objectives, but also political projects with social implications. As such, they demand clever maneuvering among social interests to succeed.
Highlights
Human body parts and tissue samples have circulated in the service of medicine for centuries
The sudden interest in tissue collections is often explained with increased emphasis on patient rights and the advent of genetic research methodologies.[5]
Most of the research using large-scale genetic biobanks focuses on risk factors, the very change in scale is an effect of this focus, and the category of risk has gradually come to be viewed as a category of disease in its own right in large parts of the public.[25,26]
Summary
Human body parts and tissue samples have circulated in the service of medicine for centuries. In the course of the 1990s, biobanks gradually became surrounded by more and more intense scholarly debates about ethical, legal and social issues (ELSI).[3,4] The sudden interest in tissue collections is often explained with increased emphasis on patient rights and the advent of genetic research methodologies.[5] I wish to suggest that it reflects a shift in collection size. When we seek to identify the relative importance of many different risk factors, rather than single genes as in e.g. Mendelian diseases, many more persons are needed to identify a pattern and estimate a relative risk To acquire this statistical strength medical scientists have to collaborate and establish much bigger networks than what has been common in medical research. Taking each of the first three ELSI letters, though in reversed order, I end by emphasizing the need for a multi-disciplinary approach to understand the implications of a transition from personal tissue collections to collective ‘Big Science’ biobanking
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