Access to biobanks: responsibilities within a research ecosystem
Access to biobanks: responsibilities within a research ecosystem
The past few decades have seen rapid increases in the size and scope of biobanks, with large-scale publicly funded ventures supporting health-related research becoming the norm. As these biobanks are increasingly asked to share their data, including for example, genome-wide analyses, questions arise about how such decisions are made, including whether applicants' research aligns with the aims of the biobank. To better understand how biobanks make decisions relating to their data use, we sought the views and experiences of those involved in decision-making relating to data access at 11 large-scale publicly funded health biobanks. We were particularly interested in how potentially contentious applications were approached. Interviewees had some concerns about decisions on applications they felt their governance structures could not reach. We ask broader questions about the responsibility of those involved in biobank access decisions-those working early in the research process-when considering such issues.
biobank, biobanking, data access committees, responsible innovation
275-281
Samuel, Gabrielle
66af6213-08de-4c0e-92c1-12083ec456e3
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
19 June 2023
Samuel, Gabrielle
66af6213-08de-4c0e-92c1-12083ec456e3
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Samuel, Gabrielle and Lucassen, Anneke
(2023)
Access to biobanks: responsibilities within a research ecosystem.
Biopreservation and Biobanking, 21 (3), .
(doi:10.1089/bio.2021.0172).
Abstract
The past few decades have seen rapid increases in the size and scope of biobanks, with large-scale publicly funded ventures supporting health-related research becoming the norm. As these biobanks are increasingly asked to share their data, including for example, genome-wide analyses, questions arise about how such decisions are made, including whether applicants' research aligns with the aims of the biobank. To better understand how biobanks make decisions relating to their data use, we sought the views and experiences of those involved in decision-making relating to data access at 11 large-scale publicly funded health biobanks. We were particularly interested in how potentially contentious applications were approached. Interviewees had some concerns about decisions on applications they felt their governance structures could not reach. We ask broader questions about the responsibility of those involved in biobank access decisions-those working early in the research process-when considering such issues.
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B_and_B_revisions_7th_march_FINAL
- Accepted Manuscript
More information
e-pub ahead of print date: 19 June 2023
Published date: 19 June 2023
Keywords:
biobank, biobanking, data access committees, responsible innovation
Identifiers
Local EPrints ID: 472679
URI: http://eprints.soton.ac.uk/id/eprint/472679
ISSN: 1947-5543
PURE UUID: 979a6de8-a756-4cb3-97ed-3a9e4ecd99a2
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Date deposited: 14 Dec 2022 17:34
Last modified: 06 Jun 2024 01:40
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