Toward a common language for biobanking

European Journal of Human Genetics

Volumn 23, Issue 1, 2015, Pages 22-28

  Fransson, Martin N ^a   Rial Sebbag, Emmanuelle ^b   Brochhausen, Mathias ^c   Litton, Jan Eric ^a  

^a KAROLINSKA INSTITUTE   (Sweden)

^b Faculté de Médecine Centre Hospitalo universitaire   (France)

^c UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CODING; INFORMED CONSENT; MEDICAL RESEARCH; NOMENCLATURE; PRIORITY JOURNAL; QUESTIONNAIRE; ANIMAL; EUROPE; HEALTH CARE FACILITY; HUMAN; INFORMATION DISSEMINATION; LABORATORY DIAGNOSIS; PROCEDURES; STANDARDS;

ANIMALS; BIOLOGICAL SPECIMEN BANKS; EUROPE; HUMANS; INFORMATION DISSEMINATION; INFORMED CONSENT; SPECIMEN HANDLING; SURVEYS AND QUESTIONNAIRES;

EID: 84927097393     PISSN: 10184813     EISSN: 14765438     Source Type: Journal    
DOI: 10.1038/ejhg.2014.45     Document Type: Article

References (26)

1. Shendure J, Ji H: Next-generation DNA sequencing. Nat Biotechnol 2008; 26: 1135-1145.
2. Martin JA, Wang Z: Next-generation transcriptome assembly. Nat Rev Genet 2011; 12: 671-682.
3. Yuille M, van Ommen GJ, Brechot C et al: Biobanking for Europe. Brief Bioinform 2008; 9: 14-24.
4. Harris JR, Burton P, Knoppers BM et al: Toward a roadmap in global biobanking for health. Eur J Hum Genet 2012; 20: 1105-1111.
5. Wichmann HE, Kuhn KA, Waldenberger M et al: Comprehensive catalog of European biobanks. Nat Biotechnol 2011; 29: 795-797.
6. Norlin L, Fransson MN, Eriksson M et al: A minimum data set for sharing biobank samples, information, and data: MIABIS. Biopreserv Biobank 2012; 10: 343-348.
7. Knoppers BM, Saginur M: The Babel of genetic data terminology. Nat Biotechnol 2005; 23: 925-927.
8. Rogers FB: Medical subject headings. Bull Med Libr Assoc 1963; 51: 114-116.
9. Sioutos N, Sd Coronado, Haber MW et al: A semantic model integrating cancer-related clinical and molecular information. J Biomed Inform 2007; 40: 30-43.
10. The European Parliament and the Council of the European Union (1995). Directive 95/46/EC of the European Parliament and of the Council. Available. http://eurlex.europa.eu/LexUriServ/LexUriServ.do?uri=CELEX:31995L0046:EN:NOTcurrently under revision, to be turned into a Regulation. http://ec.europa.eu/justice/dataprotection/. Accessed 10 December 2013.
11. Public Population Project in Genomics and Society. Lexicon. Available at. http://www.p3gobservatory.org/lexicon/list.htm. Accessed on 20 February 2013
12. International Society for Biological and Environmental Repositories (ISBER). Collection, storage, retrieval and distribution of biological materials for research. Cell Preserv Technol 2008; 6: 3-58.
13. Organisation for Economic Co-operation and Development (OECD) (2009) OECD Guidelines for Human Biobanks and Genetic Research Databases. Paris. Available at. http://www.oecd.org/science/biotech/44054609.pdf. Accessed on 20 February 2013
14. Organisation for Economic Co-operation and Development (OECD) (2006) Creation and Governance of Human Genetic Research Databases. Paris.
15. Biobanking and Biomolecular Resources Research Infrastructure (BBMRI) (2012) Statutes for the Biobanking and Biomolecular Resources Research Infrastructure - European Research Infrastructure Consortium (BBMRI-ERIC). Available at. http://www.meduni07.edis.at/files/draft-bbmri-statutes-clean.pdf. Accessed on 20 February 2013.
16. Deutscher Ethikrat (2010) Human biobanks for research. Berlin. Available at. http://www.ethikrat.org/files/der-opinion-human-biobanks.pdf. Accessed on 2 April 2013.
17. Swedish Association of Local Authorities and Regions (2011) Glossary (In Swedish). Available at. http://www.biobanksverige.se/getDocument.aspx?id=50. Accessed on 20 February 2013.
18. Oxford English Dictionary (2013) Available at. http://www.oed.com/viewdictionaryentry/Entry/36275. Accessed on 20 February 2013.
19. EuroBioBank. Available at. http://www.eurobiobank.org/en/information/glossary.htm. Accessed on 15 January 2013
20. Riegman PHJ, Morente MM, Betsou F, de Blasio P, Geary P: Biobanking for better healthcare. Mol Oncol 2008; 2: 213-222.
21. Norweigan Ministry of Health and Care Services (2008) Lov om medisinsk og helsefaglig forskning. Available at. http://www.lovdata.no/all/tl-20080620-044-001.html#4. Accessed on 15 January 2013.
22. Expert group of the European Commission (2012) Biobanks for Europe, a challenge for governance. Available at. http://ec.europa.eu/research/science-society/document-library/pdf-06/biobanks-for-europe-en.pdf. Accessed on 25 June 2013.
23. The European Commission (2012) Proposal for a new regulation COM(2012) 11 final, 2012/0011 (COD). Accessed on 25 June 2013. To follow up on the revision process see. http://ec.europa.eu/justice/data-protection/
24. Brochhausen M, Fransson MN, Kanaskar NV et al: Developing a semantically rich ontology for the biobank-administration domain. J Biomed Semantics 2013; 4: 23.
25. Smith B: From concepts to clinical reality: an essay on the benchmarking of biomedical terminologies. J Biomed Inform 2006; 39: 288-298.
26. Smith B, Ceusters W: Ontological realism: a methodology for coordinated evolution of scientific ontologies. Appl Ontol 2010; 5: 139-188.