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 - 2018/8
Y1 - 2018/8
N2 - 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.
AB - 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.
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
SN - 1947-5535
VL - 16
SP - 312
EP - 321
JO - Biopreservation and Biobanking
JF - Biopreservation and Biobanking
IS - 4
ER -