Power to the people: a wiki-governance model for biobanks

Table 1 General typology of biobanks

Classification	Characteristics (non-exhaustive)
Nature	De novo (prospective)Retrospective collection of biological samples and associated data
Type	Population-basedDisease-based
Age cohort	AdultPediatric
Purpose of collection	Clinical trialPathological archiveBasic researchTranslational studyPublic healthForensic
Size and scope	Specific community/communitiesRegionalNationalInternational
Nature of biological samples	DNA/RNABloodSerumTissuesUrineSaliva
Type of data	GeneticPhenotypicHealth relatedGenealogicalLifestyle
Period of storage	FixedIndefinite
Level of security	CodedAnonymizedAnonymous
Funding	PublicPrivatePublic-private
Venue	HospitalAcademic or research institutionGovernmental institutionIndustryFoundation or disease-advocacy organization

Biobanks may be generally defined as an organized collection of human biological material and associated information stored for one or more research purposes. As this table illustrates, there is an open-ended and potentially non-exclusive typology in the rich tapestry of biobanks [25, 68], but many stand at the intersection of multiple issues such as medicine, science, markets and public health [56]. This article focuses on large-scale, longitudinal, publicly funded, population-based biobanks. A population-based biobank has the following characteristics, based on the Council of Europe criteria [69]: (i) the collection has a population basis; (ii) it is established, or has been converted, to supply biological materials or data derived therefrom for multiple future research projects; (iii) it contains biological materials and associated personal data, which may include or be linked to genealogical, medical and lifestyle data, and which may be regularly updated; and (iv) it receives and supplies materials in an organized manner. Table adapted from [70].

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