Literature DB >> 26670686

Models of biobanks and implications for reproductive health innovation.

Benjamin Capps1.   

Abstract

Biobanks are designed with particular purposes in mind. These purposes are reflected in the governance frameworks that define the conditions for participation and access by researchers. In this paper, I analyse two different models: the commercially aligned deCODE biobank and the 'public good' framework of UK Biobank. These diametric models have both featured 'the public interest' as pivotal to their achievements. However, if properly understood, the public interest rhetoric of deCODE actually conflicts with any professed community interest. The reasons why are explained, and the effects this has on conditions for participation are critiqued, before reflecting on how each model might have an impact on reproductive health research.

Keywords:  Biobank; Consent; Reproductive health; The public good; The public interest

Mesh:

Year:  2015        PMID: 26670686     DOI: 10.1007/s40592-015-0042-y

Source DB:  PubMed          Journal:  Monash Bioeth Rev        ISSN: 1321-2753


  19 in total

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Journal:  Nature       Date:  1999-07-22       Impact factor: 49.962

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Authors:  Michael Specter
Journal:  New Yorker       Date:  1999-01-18

4.  Is informed consent a solution to contractual problems? A comment on the article '"Iceland Inc."?: On the Ethics of Commercial Population Genomics' by Jon F. Merz, Glenn E. McGee, and Pamela Sankar.

Authors:  Klaus Hoeyer; Niels Lynöe
Journal:  Soc Sci Med       Date:  2004-03       Impact factor: 4.634

5.  Partnership in U.K. Biobank: a third way for genomic property?

Authors:  David E Winickoff
Journal:  J Law Med Ethics       Date:  2007       Impact factor: 1.718

6.  Iceland's central database of health records.

Authors:  R Haraldsdóttir
Journal:  Science       Date:  1999-01-22       Impact factor: 47.728

7.  Large-scale whole-genome sequencing of the Icelandic population.

Authors:  Daniel F Gudbjartsson; Hannes Helgason; Sigurjon A Gudjonsson; Florian Zink; Asmundur Oddson; Arnaldur Gylfason; Soren Besenbacher; Gisli Magnusson; Bjarni V Halldorsson; Eirikur Hjartarson; Gunnar Th Sigurdsson; Simon N Stacey; Michael L Frigge; Hilma Holm; Jona Saemundsdottir; Hafdis Th Helgadottir; Hrefna Johannsdottir; Gunnlaugur Sigfusson; Gudmundur Thorgeirsson; Jon Th Sverrisson; Solveig Gretarsdottir; G Bragi Walters; Thorunn Rafnar; Bjarni Thjodleifsson; Einar S Bjornsson; Sigurdur Olafsson; Hildur Thorarinsdottir; Thora Steingrimsdottir; Thora S Gudmundsdottir; Asgeir Theodors; Jon G Jonasson; Asgeir Sigurdsson; Gyda Bjornsdottir; Jon J Jonsson; Olafur Thorarensen; Petur Ludvigsson; Hakon Gudbjartsson; Gudmundur I Eyjolfsson; Olof Sigurdardottir; Isleifur Olafsson; David O Arnar; Olafur Th Magnusson; Augustine Kong; Gisli Masson; Unnur Thorsteinsdottir; Agnar Helgason; Patrick Sulem; Kari Stefansson
Journal:  Nat Genet       Date:  2015-03-25       Impact factor: 38.330

8.  A mutation in APP protects against Alzheimer's disease and age-related cognitive decline.

Authors:  Thorlakur Jonsson; Jasvinder K Atwal; Stacy Steinberg; Jon Snaedal; Palmi V Jonsson; Sigurbjorn Bjornsson; Hreinn Stefansson; Patrick Sulem; Daniel Gudbjartsson; Janice Maloney; Kwame Hoyte; Amy Gustafson; Yichin Liu; Yanmei Lu; Tushar Bhangale; Robert R Graham; Johanna Huttenlocher; Gyda Bjornsdottir; Ole A Andreassen; Erik G Jönsson; Aarno Palotie; Timothy W Behrens; Olafur T Magnusson; Augustine Kong; Unnur Thorsteinsdottir; Ryan J Watts; Kari Stefansson
Journal:  Nature       Date:  2012-08-02       Impact factor: 49.962

9.  The tobacco industry, researchers, and ethical access to UK Biobank: using the public interest and public good.

Authors:  Benjamin James Capps; Yvette van der Eijk
Journal:  Am J Public Health       Date:  2014-08-14       Impact factor: 9.308

10.  Consent, commodification and benefit-sharing in genetic research.

Authors:  Donna Dickenson
Journal:  Dev World Bioeth       Date:  2004-12       Impact factor: 2.294

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  6 in total

1.  Commentary on models of biobanks and implications for reproductive health innovation.

Authors:  Einar Árnason
Journal:  Monash Bioeth Rev       Date:  2015-12

2.  Editorial. Biobanking Eggs and Embryos for Research.

Authors:  Dave Snow; Alana Cattapan
Journal:  Monash Bioeth Rev       Date:  2015-12

3.  Establishing a reproductive biorepository for basic and translational research: experience developing the reproductive subjects registry and sample repository.

Authors:  Samantha B Schon; Nicholas Raja; Min Xu; Heather Cameron; Kun Yang; Jayne Reynolds; Dee Fenner; Erica E Marsh
Journal:  J Assist Reprod Genet       Date:  2021-03-30       Impact factor: 3.357

4.  Biobanking of different body fluids within the frame of IVF-a standard operating procedure to improve reproductive biology research.

Authors:  Michael Schenk; Berthold Huppertz; Barbara Obermayer-Pietsch; Darja Kastelic; Martina Hörmann-Kröpfl; Gregor Weiss
Journal:  J Assist Reprod Genet       Date:  2016-11-26       Impact factor: 3.412

5.  Falling giants and the rise of gene editing: ethics, private interests and the public good.

Authors:  Benjamin Capps; Ruth Chadwick; Yann Joly; John J Mulvihill; Tamra Lysaght; Hub Zwart
Journal:  Hum Genomics       Date:  2017-08-29       Impact factor: 4.639

6.  Where Does Open Science Lead Us During a Pandemic? A Public Good Argument to Prioritize Rights in the Open Commons.

Authors:  Benjamin Capps
Journal:  Camb Q Healthc Ethics       Date:  2020-06-05       Impact factor: 1.566

  6 in total

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