TY - JOUR

T1 - Challenges for the sustainability of university-run biobanks

AU - Kongsholm, Nana Cecilie Halmsted

AU - Christensen, Søren Tvorup

AU - Herrmann, Janne Rothmar

AU - Larsen, Lars Allan

AU - Minssen, Timo

AU - Pedersen, Lotte Bang

AU - Rajam, Neethu

AU - Tommerup, Niels

AU - Tupasela, Aaro Mikael

AU - Schovsbo, Jens Hemmingsen

PY - 2018

Y1 - 2018

N2 - Most university biobanks begin like other university research projects, i.e. 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 inter alia 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 paper 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 paper sets out concrete recommendations which universities should consider and act upon.

AB - Most university biobanks begin like other university research projects, i.e. 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 inter alia 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 paper 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 paper sets out concrete recommendations which universities should consider and act upon.

KW - Faculty of Humanities

KW - biobanks

KW - sustainability

KW - property rights

KW - access to samples

KW - custodianship

KW - FAIR principles

U2 - 10.1089/bio.2018.0054

DO - 10.1089/bio.2018.0054

M3 - Journal article

C2 - 30016130

VL - 16

SP - 312

EP - 321

JO - Biopreservation and Biobanking

JF - Biopreservation and Biobanking

SN - 1947-5535

IS - 4

ER -