Challenges for the sustainability of university-run biobanks

Nana Cecilie Halmsted Kongsholm; Søren Tvorup Christensen; Janne Rothmar Herrmann; Lars Allan Larsen; Timo Minssen; Lotte Bang Pedersen; Neethu Rajam; Niels Tommerup; Aaro Mikael Tupasela; Jens Hemmingsen Schovsbo

doi:10.1089/bio.2018.0054

Challenges for the sustainability of university-run biobanks

Nana Cecilie Halmsted Kongsholm, Søren Tvorup Christensen, Janne Rothmar Herrmann, Lars Allan Larsen, Timo Minssen, Lotte Bang Pedersen, Neethu Rajam, Niels Tommerup, Aaro Mikael Tupasela, Jens Hemmingsen Schovsbo

3 Citations (Scopus)

62 Downloads (Pure)

Abstract

Most university biobanks begin like other university research projects, that is, with an idea conceived by an individual researcher in pursuit of his/her own research interests, publications, funding, and career. Some biobanks, however, come to have scientific value that goes beyond the projects that were initially responsible for the collection of the samples and data they contain. Such value may derive from among other things the uniqueness of the samples in terms of their sheer volume, the quality of the samples, the ability to link the samples with information retrieved in disease registries, or the fact that the samples represent very rare diseases. This article focuses on biobanks of this kind, and the special obligations that publicly funded universities have to ensure the sustainability of biobanks with continued scientific value. We argue that universities should adopt policies to deal with the various, diverse issues which may arise during the lifecycle of a biobank. The policies should be flexible, accommodate the freedoms of individual researchers, and reflect the multifaceted nature of biobanks. Yet they should be specific enough to provide guidance and robust enough to safeguard legal norms and ethical values. The article sets out concrete recommendations which universities should consider and act upon.

Original language	English
Journal	Biopreservation and Biobanking
Volume	16
Issue number	4
Pages (from-to)	312-321
Number of pages	10
ISSN	1947-5535
DOIs	https://doi.org/10.1089/bio.2018.0054
Publication status	Published - Aug 2018

Keywords

Faculty of Humanities
biobanks
sustainability
property rights
access to samples
custodianship
FAIR principles

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title = "Challenges for the sustainability of university-run biobanks",

abstract = "Most university biobanks begin like other university research projects, that is, with an idea conceived by an individual researcher in pursuit of his/her own research interests, publications, funding, and career. Some biobanks, however, come to have scientific value that goes beyond the projects that were initially responsible for the collection of the samples and data they contain. Such value may derive from among other things the uniqueness of the samples in terms of their sheer volume, the quality of the samples, the ability to link the samples with information retrieved in disease registries, or the fact that the samples represent very rare diseases. This article focuses on biobanks of this kind, and the special obligations that publicly funded universities have to ensure the sustainability of biobanks with continued scientific value. We argue that universities should adopt policies to deal with the various, diverse issues which may arise during the lifecycle of a biobank. The policies should be flexible, accommodate the freedoms of individual researchers, and reflect the multifaceted nature of biobanks. Yet they should be specific enough to provide guidance and robust enough to safeguard legal norms and ethical values. The article sets out concrete recommendations which universities should consider and act upon.",

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AU - Minssen, Timo

AU - Pedersen, Lotte Bang

AU - Rajam, Neethu

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Challenges for the sustainability of university-run biobanks

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Keywords

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