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

TY - JOUR

T1 - Beyond and within public engagement

T2 - a broadened approach to engagement in biobanking

AU - Cañada, Jose A.

AU - Tupasela, Aaro Mikael

AU - Snell, Karoliina

PY - 2015/10/2

Y1 - 2015/10/2

N2 - 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.

AB - 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.

U2 - 10.1080/14636778.2015.1105130

DO - 10.1080/14636778.2015.1105130

M3 - Journal article

SN - 1463-6778

VL - 34

SP - 355

EP - 376

JO - New Genetics and Society

JF - New Genetics and Society

IS - 4

ER -