Literature DB >> 30089824

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

Holger Langhof1, Hannes Kahrass2, Thomas Illig3, Roland Jahns4, Daniel Strech2,5.   

Abstract

Human biological materials and related data stored in biobanks are valuable resources for biomedical research. Transparent, effective, and efficient governance structures and procedures for access, compensation, and priority setting are needed, but recent debates indicate challenges in the practical application of such governance processes. This study aimed to assess the practical experiences and attitudes of biobank experts regarding the governance of biosample access, prioritization, and compensation. Qualitative, semi-structured telephone interviews were conducted with 20 biobank directors from eight countries. Respondents highlighted the need for sound governance structures in order to ensure acceptance by all stakeholders (patients/donors, researchers, research funders, public, and others). They stressed practical difficulties in trying to make best use of biomaterials. As biobanks often form part of larger academic and clinical settings, the different and sometimes conflicting interests of researchers, clinicians, patients, funders, and biobank staff currently affect the governance of access decisions. Investments such as intellectual input, financial, and human resources need to be compensated adequately. Biobanks thereby have a dual role stewarding the hosted biosamples and acting as a service provider for local researchers from universities or hospitals. In order to facilitate efficient use of human biological materials, greater harmonization of at least minimum standards for access and compensation are required at both a national and an international level.

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Mesh:

Year:  2018        PMID: 30089824      PMCID: PMC6189200          DOI: 10.1038/s41431-018-0228-x

Source DB:  PubMed          Journal:  Eur J Hum Genet        ISSN: 1018-4813            Impact factor:   4.246


  28 in total

1.  Assessing the impact of biobanks.

Authors:  Anne Cambon-Thomsen
Journal:  Nat Genet       Date:  2003-05       Impact factor: 38.330

Review 2.  Synthesising qualitative and quantitative evidence: a review of possible methods.

Authors:  Mary Dixon-Woods; Shona Agarwal; David Jones; Bridget Young; Alex Sutton
Journal:  J Health Serv Res Policy       Date:  2005-01

3.  Stewardship practices of U.S. biobanks.

Authors:  Gail E Henderson; Teresa P Edwards; R Jean Cadigan; Arlene M Davis; Catherine Zimmer; Ian Conlon; Bryan J Weiner
Journal:  Sci Transl Med       Date:  2013-12-11       Impact factor: 17.956

4.  'Access arrangements' for biobanks: a fine line between facilitating and hindering collaboration.

Authors:  S Fortin; S Pathmasiri; R Grintuch; M Deschênes
Journal:  Public Health Genomics       Date:  2010-07-30       Impact factor: 2.000

5.  Genetic research and biobanks.

Authors:  Don Chalmers
Journal:  Methods Mol Biol       Date:  2011

Review 6.  Biobanking for better healthcare.

Authors:  Peter H J Riegman; Manuel M Morente; Fay Betsou; Pasquale de Blasio; Peter Geary
Journal:  Mol Oncol       Date:  2008-07-30       Impact factor: 6.603

7.  Developing a guideline to standardize the citation of bioresources in journal articles (CoBRA).

Authors:  Elena Bravo; Alessia Calzolari; Paola De Castro; Laurence Mabile; Federica Napolitani; Anna Maria Rossi; Anne Cambon-Thomsen
Journal:  BMC Med       Date:  2015-02-17       Impact factor: 8.775

8.  P(3)G - 10 years of toolbuilding: From the population biobank to the clinic.

Authors:  Sylvie Ouellette; Anne Marie Tassé
Journal:  Appl Transl Genom       Date:  2014-04-13

9.  BBMRI-ERIC Directory: 515 Biobanks with Over 60 Million Biological Samples.

Authors:  Petr Holub; Morris Swertz; Robert Reihs; David van Enckevort; Heimo Müller; Jan-Eric Litton
Journal:  Biopreserv Biobank       Date:  2016-12       Impact factor: 2.300

10.  How to responsibly acknowledge research work in the era of big data and biobanks: ethical aspects of the Bioresource Research Impact Factor (BRIF).

Authors:  Heidi Carmen Howard; Deborah Mascalzoni; Laurence Mabile; Gry Houeland; Emmanuelle Rial-Sebbag; Anne Cambon-Thomsen
Journal:  J Community Genet       Date:  2017-09-25
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  8 in total

Review 1.  Biobanking in health care: evolution and future directions.

Authors:  Luigi Coppola; Alessandra Cianflone; Anna Maria Grimaldi; Mariarosaria Incoronato; Paolo Bevilacqua; Francesco Messina; Simona Baselice; Andrea Soricelli; Peppino Mirabelli; Marco Salvatore
Journal:  J Transl Med       Date:  2019-05-22       Impact factor: 5.531

2.  Population's perspectives toward biobanks in scientific research: a study from Jordan.

Authors:  Hanin Makhlouf; Nasr Alrabadi; Omar F Khabour; Karem H Alzoubi; Wael Al-Delaimy
Journal:  Pharmgenomics Pers Med       Date:  2019-03-21

Review 3.  Collection and use of human materials during TB clinical research; a review of practices.

Authors:  Joseph Ochieng; Betty Kwagala; Nelson Sewankambo
Journal:  BMC Med Ethics       Date:  2022-03-29       Impact factor: 2.834

Review 4.  Paediatric biobanking for health: The ethical, legal, and societal landscape.

Authors:  Sara Casati; Bridget Ellul; Michaela Th Mayrhofer; Marialuisa Lavitrano; Elodie Caboux; Zisis Kozlakidis
Journal:  Front Public Health       Date:  2022-09-27

5.  Implementation of data access and use procedures in clinical data warehouses. A systematic review of literature and publicly available policies.

Authors:  Elena Pavlenko; Daniel Strech; Holger Langhof
Journal:  BMC Med Inform Decis Mak       Date:  2020-07-11       Impact factor: 2.796

6.  Public awareness of and attitudes towards research biobanks in Latvia.

Authors:  S Mezinska; J Kaleja; I Mileiko; D Santare; V Rovite; L Tzivian
Journal:  BMC Med Ethics       Date:  2020-07-31       Impact factor: 2.652

7.  Purification of viable peripheral blood mononuclear cells for biobanking using a robotized liquid handling workstation.

Authors:  Luigi Coppola; Giovanni Smaldone; Alessandra Cianflone; Simona Baselice; Peppino Mirabelli; Marco Salvatore
Journal:  J Transl Med       Date:  2019-11-12       Impact factor: 5.531

8.  Bridging the Collaboration Gap: Real-time Identification of Clinical Specimens for Biomedical Research.

Authors:  Thomas J S Durant; Guannan Gong; Nathan Price; Wade L Schulz
Journal:  J Pathol Inform       Date:  2020-05-20
  8 in total

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