Successful biobanking is a complex interplay between the biobank itself, policies, governance and the population it operates in. Community engagement is also a central component of biobanking governance. Together, these factors affect the populations from which biobanks collect samples. Furthermore, biobank engagement strategies construct perceptions of populations that may imbue patient groups or nationalities with particular characteristics, such as whether they are consensus-seeking, commercialized or authoritarian.
Tupasela et al.1 conducted 16 semi-structured interviews with personnel from a cross section of biobanks and biobank networks in six countries: the United States, Canada, the United Kingdom, Spain, Finland and Iceland. They also conducted 6 interviews with policy-makers and regulators to develop a broader picture of the engagement strategies used by biobanks in the different countries. From this, they constructed three examples—from Canada, Spain and Finland—because of the distinct differences in their approaches. The researchers suggest that biobanking practices give rise to the construction of different types of populations through differing engagement strategies.
The researchers found that many biobanking initiatives follow different definitions and practices for public engagement. Additionally, the public is only one of a number of targets of engagement. This variation can also be seen as a way of constructing the public as either an active or passive partner in the research process.
Canadian public attitudes toward biobanking and biomedical research were mostly positive across provinces. Canadians regard biobanks as public goods, primarily for public benefit. Nonetheless, biobanks have been unsuccessful in creating or sustaining a partnership model where the public actively engages with biobanks. In spite of this, the authors found that active promotion by biobanks has led to a population with trust in the institutions involved in biobanking. Interestingly, they also found that the populations within Canadian provinces tend to focus on the benefits biobanks may have locally rather than nationally, and suggest that public engagement should reflect these attitudes.
In Spain, the team found that the country’s political and economic challenges have resulted in a population more passive in relation to biobanking activities. To some extent, biobanks facilitate this deliberately, preferring to use physician and hospital proxies for public engagement. In this way, they remain removed from direct contact with the individuals providing samples. Public engagement is not a high priority in Spain.
Finally, in Finland, the authors note there is a positive and willing population, where biobanking strategy has an agenda that speaks to public interest. The interests of the Finnish researchers and the public are parallel, reflecting a society that is strongly medically driven.
From this,Tupasela et al. propose constructing biobanking populations not just through the collection of biomaterial, but also through sample collection processes, research processes, and the level and type of interactions with the population. Therefore, the population of the biobank can also be described in terms of the interactions between the biobank and the population. From a practical point of view, the authors suggest that their findings imply that international standardization, or even standardization with surrounding biobanks, may not be so straightforward, because it does not consider regional differences.
1. Tupasela, A., Snell, K., & Cañada, J.A. (2015) “Constructing populations in biobanking,” Life Sciences, Society and Policy 11(5), doi: doi: 10.1186/s40504-015-0024-0.