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

被引:12
|
作者
Canada, Jose A. [1 ]
Tupasela, Aaro [2 ]
Snell, Karoliina [1 ]
机构
[1] Univ Helsinki, Dept Social Res, Helsinki, Finland
[2] Univ Copenhagen, Dept Publ Hlth, Ctr Med Sci & Technol Studies, Copenhagen, Denmark
关键词
biobanks; public engagement; community engagement; biobank sustainability; DEMOCRACY; PRIVACY; SCIENCE; MODEL; LIFE; NEED;
D O I
10.1080/14636778.2015.1105130
中图分类号
Q81 [生物工程学(生物技术)]; Q93 [微生物学];
学科分类号
071005 ; 0836 ; 090102 ; 100705 ;
摘要
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.
引用
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页码:355 / 376
页数:22
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