Literature DB >> 22147279

Biobank governance: heterogeneous modes of ordering and democratization.

Herbert Gottweis1, Georg Lauss.   

Abstract

The great interest in biobanks, the related, substantial investments, and the expectations connected with them raises the question of how to explain the relative successes and failures of contemporary biobank projects. In this article we will present and discuss areas that need ongoing attention by many stakeholders in order stabilize and utilize biobanks and biobank networks in the future. Our aim is to present and utilize an analytical model for comparing structures of biobank governance. The governance model we deduce from empirical case studies is not a well-ordered, almost bureaucratic type of government. The patchwork character and the interrelatedness of heterogeneous activities that constitute biobank governance in its multiple dimensions will be highlighted. Biobank governance should therefore be understood as strategy for patterning a network of interaction that unfolds within and across a number of different fields including a variety of activities that go beyond regulatory activities: the scientific/technological field, the medical/health field, the industrial-economic field, the legal-ethical, and the sociopolitical field. Our account emphasizes that biobanks are not technical visions that operate vis-à-vis an external society. The article discusses attempts to develop participatory governance structures. It concludes that facilitating and managing the integration of a network of more or less interrelated actors, in many nonhierarchic ways, should not be equated with democratization per se, but can nevertheless be regarded as an important step towards a more pluralistic and inclusive style of policy making.

Year:  2011        PMID: 22147279      PMCID: PMC3312942          DOI: 10.1007/s12687-011-0070-0

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  21 in total

1.  Biobanks. Population databases boom, from Iceland to the U.S.

Authors:  Jocelyn Kaiser
Journal:  Science       Date:  2002-11-08       Impact factor: 47.728

2.  An empirical survey on biobanking of human genetic material and data in six EU countries.

Authors:  Isabelle Hirtzlin; Christine Dubreuil; Nathalie Préaubert; Jenny Duchier; Brigitte Jansen; Jürgen Simon; Paula Lobato De Faria; Anna Perez-Lezaun; Bert Visser; Garrath D Williams; Anne Cambon-Thomsen
Journal:  Eur J Hum Genet       Date:  2003-06       Impact factor: 4.246

3.  Assessing the impact of biobanks.

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

4.  Building global networks for human diseases: genes and populations.

Authors:  Hans-E Hagen; Jan Carlstedt-Duke
Journal:  Nat Med       Date:  2004-07       Impact factor: 53.440

5.  Consent and anonymization in research involving biobanks: differing terms and norms present serious barriers to an international framework.

Authors:  Bernice S Elger; Arthur L Caplan
Journal:  EMBO Rep       Date:  2006-07       Impact factor: 8.807

Review 6.  Bodily rights and property rights.

Authors:  B Björkman; S O Hansson
Journal:  J Med Ethics       Date:  2006-04       Impact factor: 2.903

7.  The consent problem within DNA biobanks.

Authors:  Darren Shickle
Journal:  Stud Hist Philos Biol Biomed Sci       Date:  2006-08-22

Review 8.  Should donors be allowed to give broad consent to future biobank research?

Authors:  Mats G Hansson; Joakim Dillner; Claus R Bartram; Joyce A Carlson; Gert Helgesson
Journal:  Lancet Oncol       Date:  2006-03       Impact factor: 41.316

9.  The social life of genes: privacy, property and the new genetics.

Authors:  Margaret Everett
Journal:  Soc Sci Med       Date:  2003-01       Impact factor: 4.634

Review 10.  Human genetic research: emerging trends in ethics.

Authors:  Bartha Maria Knoppers; Ruth Chadwick
Journal:  Nat Rev Genet       Date:  2005-01       Impact factor: 53.242

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  16 in total

1.  Editorial: genetics and democracy.

Authors:  Maria Hedlund; Niclas Hagen; Ulf Kristoffersson
Journal:  J Community Genet       Date:  2012-03-09

Review 2.  An Introduction to Starting a Biobank.

Authors:  Mitra D Harati; Ryan R Williams; Masoud Movassaghi; Amin Hojat; Gregory M Lucey; William H Yong
Journal:  Methods Mol Biol       Date:  2019

3.  Genetics and democracy-what is the issue?

Authors:  Niclas Hagen; Maria Hedlund; Susanne Lundin; Shai Mulinari; Ulf Kristoffersson
Journal:  J Community Genet       Date:  2012-07-25

Review 4.  Advancing clinical and translational research in germ cell tumours (GCT): recommendations from the Malignant Germ Cell International Consortium.

Authors:  Adriana Fonseca; João Lobo; Florette K Hazard; Joanna Gell; Peter K Nicholls; Robert S Weiss; Lindsay Klosterkemper; Samuel L Volchenboum; James C Nicholson; A Lindsay Frazier; James F Amatruda; Aditya Bagrodia; Michelle Lockley; Matthew J Murray
Journal:  Br J Cancer       Date:  2022-10-13       Impact factor: 9.075

5.  Power to the people: a wiki-governance model for biobanks.

Authors:  Edward S Dove; Yann Joly; Bartha M Knoppers
Journal:  Genome Biol       Date:  2012-05-29       Impact factor: 13.583

6.  Current Status and Future Challenges of Biobank Research in Malaysia.

Authors:  Latifah Amin; Angelina Olesen; Zurina Mahadi; Maznah Ibrahim
Journal:  Asian Bioeth Rev       Date:  2021-03-31

Review 7.  Challenges in biobank governance in Sub-Saharan Africa.

Authors:  Ciara Staunton; Keymanthri Moodley
Journal:  BMC Med Ethics       Date:  2013-09-11       Impact factor: 2.652

8.  Future of biobanks - bigger, longer, and more dimensional.

Authors:  Ozren Polasek
Journal:  Croat Med J       Date:  2013-10-28       Impact factor: 1.351

9.  Public's attitudes on participation in a biobank for research: an Italian survey.

Authors:  Corinna Porteri; Patrizio Pasqualetti; Elena Togni; Michael Parker
Journal:  BMC Med Ethics       Date:  2014-11-26       Impact factor: 2.652

10.  Stakeholder perspectives on the ethico-legal dimensions of biobanking in South Africa.

Authors:  Shenuka Singh; Keymanthri Moodley
Journal:  BMC Med Ethics       Date:  2021-07-01       Impact factor: 2.652

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