Literature DB >> 25496154

Access to biobanks: harmonization across biobank initiatives.

Michiel Verlinden1, Herman Nys, Nadine Ectors, Isabelle Huys.   

Abstract

PURPOSE: The current study investigates whether access arrangements relevant for biobanking contain clear information on key access conditions. It furthermore assesses the extent to which these access conditions are harmonized across biobank initiatives.
METHODS: A comparative analysis was conducted of access arrangements developed by 26 organizations, 36 biobank networks, and 20 biobanks worldwide.
RESULTS: The study demonstrates a lack of clear information on 21 key access conditions relevant for biobanking. Furthermore, it confirms that the harmonization across biobank initiatives is limited.
CONCLUSION: Many biobank initiatives need to be more transparent on how they apply the studied access conditions.

Mesh:

Year:  2014        PMID: 25496154     DOI: 10.1089/bio.2014.0034

Source DB:  PubMed          Journal:  Biopreserv Biobank        ISSN: 1947-5543            Impact factor:   2.300


  6 in total

1.  Access policies in biobank research: what criteria do they include and how publicly available are they? A cross-sectional study.

Authors:  Holger Langhof; Hannes Kahrass; Sören Sievers; Daniel Strech
Journal:  Eur J Hum Genet       Date:  2016-12-21       Impact factor: 4.246

2.  Current practices for access, compensation, and prioritization in biobanks. Results from an interview study.

Authors:  Holger Langhof; Hannes Kahrass; Thomas Illig; Roland Jahns; Daniel Strech
Journal:  Eur J Hum Genet       Date:  2018-08-08       Impact factor: 4.246

Review 3.  Spanning the genomics era: the vital role of a single institution biorepository for childhood cancer research over a decade.

Authors:  Li Zhou; Daniel Catchpoole
Journal:  Transl Pediatr       Date:  2015-04

4.  Qualitative study on custodianship of human biological material and data stored in biobanks.

Authors:  Michiel Verlinden; Herman Nys; Nadine Ectors; Isabelle Huys
Journal:  BMC Med Ethics       Date:  2016-03-01       Impact factor: 2.652

5.  Toward a Tiered Model to Share Clinical Trial Data and Samples in Precision Oncology.

Authors:  Stefanie Broes; Denis Lacombe; Michiel Verlinden; Isabelle Huys
Journal:  Front Med (Lausanne)       Date:  2018-01-29

6.  Benefits and barriers in the design of harmonized access agreements for international data sharing.

Authors:  Katie M Saulnier; David Bujold; Stephanie O M Dyke; Charles Dupras; Stephan Beck; Guillaume Bourque; Yann Joly
Journal:  Sci Data       Date:  2019-12-02       Impact factor: 6.444

  6 in total

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