Literature DB >> 19953124

Legal and ethical consequences of international biobanking from a national perspective: the German BMB-EUCoop project.

Jürgen W Goebel1, Thomas Pickardt, Maren Bedau, Michael Fuchs, Christian Lenk, Inga Paster, Tarde M Spranger, Ulrich Stockter, Ulrike Bauer, David N Cooper, Michael Krawczak.   

Abstract

The international transfer of human biomaterial and data has become a prerequisite for collaborative biomedical research to be successful. However, although a national legal framework for 'biobanking' has already been formulated in many countries, little is known about how an international exchange of data and samples might affect the legal position of national biobanks and their donors. The German Telematics Platform and the Competence Network 'Congenital Heart Defects' jointly instigated a project (BMB-EUCoop) to (i) identify and assess the legal risks ensuing for biobanks and their donors in the context of Europe-wide research collaborations, (ii) devise practical recommendations to minimize or avoid these risks, and (iii) provide generic informational text, contracts and agreements to facilitate their practical implementation. Four different countries were included in the study; namely, the UK, Netherlands, Austria and Switzerland. The results of the study indicate that the degree of similarity between legal systems in different countries varies according to the respective field of jurisdiction. Although personality and property rights have long been enshrined in virtually identical pieces of law, the applicable medical professional regulations were found to be somewhat heterogeneous. Furthermore, clear-cut differences were often found to be lacking between regulations that reflect either 'soft law' or the nationally binding 'hard law' that has emerged from it. In view of the potential ambiguities, the experts uniformly concluded that the rights and interests of national (in this case, German) biobanks and their donors would be best protected by explicitly addressing any uncertainties in formal contractual agreements.

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Year:  2009        PMID: 19953124      PMCID: PMC2987313          DOI: 10.1038/ejhg.2009.214

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


  12 in total

1.  The banking of embryonic stem cells: the legal and ethical framework in the UK.

Authors:  Genevra Richarson
Journal:  Rev Derecho Genoma Hum       Date:  2004 Jan-Jun

2.  A legal framework for biobanking: the German experience.

Authors:  Jürgen Simon; Rainer Paslack; Jürgen Robienski; David N Cooper; Jürgen W Goebel; Michael Krawczak
Journal:  Eur J Hum Genet       Date:  2007-03-14       Impact factor: 4.246

Review 3.  Biobanking for Europe.

Authors:  Martin Yuille; Gert-Jan van Ommen; Christian Bréchot; Anne Cambon-Thomsen; Georges Dagher; Ulf Landegren; Jan-Eric Litton; Markus Pasterk; Leena Peltonen; Mike Taussig; H-Erich Wichmann; Kurt Zatloukal
Journal:  Brief Bioinform       Date:  2007-10-23       Impact factor: 11.622

4.  The informed consent aftermath of the genetic revolution. An Italian example of implementation.

Authors:  Federica Artizzu
Journal:  Med Health Care Philos       Date:  2007-07-19

5.  The regulation of biobanks in Spain.

Authors:  Herman Nys; Geraldine Fobelets
Journal:  Rev Derecho Genoma Hum       Date:  2008 Jul-Dec

6.  Sample, data use and protection in biobanking in Europe: legal issues.

Authors:  Eleni Zika; Tobias Schulte In den Bäumen; Jane Kaye; Angela Brand; Dolores Ibarreta
Journal:  Pharmacogenomics       Date:  2008-06       Impact factor: 2.533

7.  Lessons from European population genetic databases: comparing the law in Estonia, Iceland, Sweden and the United Kingdom.

Authors:  Susan M C Gibbons; Hördur Helgi Helgason; Jane Kaye; Ants Nõmper; Lotta Wendel
Journal:  Eur J Health Law       Date:  2005-06

Review 8.  Ethical, legal, and social implications of biobanks for genetics research.

Authors:  Susanne B Haga; Laura M Beskow
Journal:  Adv Genet       Date:  2008       Impact factor: 1.944

Review 9.  Commercial biobanks and genetic research: ethical and legal issues.

Authors:  Mary Anderlik
Journal:  Am J Pharmacogenomics       Date:  2003

10.  Tissue banking, patient rights, and confidentiality: tensions in law and policy.

Authors:  T Caulfield
Journal:  Med Law       Date:  2004
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  7 in total

1.  Challenges for quality management in implementation, maintenance, and sustainability of research tissue biobanks.

Authors:  S Schmitt; K Kynast; P Schirmacher; E Herpel
Journal:  Virchows Arch       Date:  2015-08-14       Impact factor: 4.064

2.  Biobanking and international interoperability: samples.

Authors:  Michael Kiehntopf; Michael Krawczak
Journal:  Hum Genet       Date:  2011-07-15       Impact factor: 4.132

Review 3.  Biobanking for research in surgery: are surgeons in charge for advancing translational research or mere assistants in biomaterial and data preservation?

Authors:  Wolfgang E Thasler; Reinhard M K Thasler; Celine Schelcher; Karl-Walter Jauch
Journal:  Langenbecks Arch Surg       Date:  2013-02-22       Impact factor: 3.445

4.  Formative research on perceptions of biobanking: what community members think.

Authors:  John S Luque; Gwendolyn P Quinn; Francisco A Montel-Ishino; Mariana Arevalo; Shalanda A Bynum; Shalewa Noel-Thomas; Kristen J Wells; Clement K Gwede; Cathy D Meade
Journal:  J Cancer Educ       Date:  2012-03       Impact factor: 2.037

5.  Is the NIH policy for sharing GWAS data running the risk of being counterproductive?

Authors:  Michael Krawczak; Jürgen W Goebel; David N Cooper
Journal:  Investig Genet       Date:  2010-09-01

Review 6.  Ethical aspects of human biobanks: a systematic review.

Authors:  Danijela Budimir; Ozren Polasek; Ana Marusić; Ivana Kolcić; Tatijana Zemunik; Vesna Boraska; Ana Jeroncić; Mladen Boban; Harry Campbell; Igor Rudan
Journal:  Croat Med J       Date:  2011-06       Impact factor: 1.351

7.  REXIC Project: Retrospective Cross-Sectional Study of Documentation of Informed Consent for Research Biobanking in A Public Research and Teaching Hospital.

Authors:  Marta Nobile; Elena Garavelli; Barbara Gagliardi; Silvia Giovanelli; Paolo Rebulla; Concetta Caccami; Diego Iemmi; Federico Saibene; Silvana Castaldi
Journal:  J Public Health Res       Date:  2013-07-23
  7 in total

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