Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

The Babel of genetic data terminology

This is a preview of subscription content, access via your institution

Relevant articles

Open Access articles citing this article.

Access options

Rent or buy this article

Prices vary by article type

from$1.95

to$39.95

Prices may be subject to local taxes which are calculated during checkout

References

  1. Khoury, M.J. Nat. Genet. 36, 1207–1028 (2004).

    Article  Google Scholar 

  2. United Nations Educational, Scientific and Cultural Organization. International Declaration on Human Genetic Data (UNESCO, Geneva, Switzerland, 2003). http://portal.unesco.org/shs/en/file_download.php/6016a4bea4c293a23e913de638045ea9Declaration_en.pdf (Accessed on August 31, 2004).

  3. World Health Organization. European Partnership on Patients' Rights and Citizens' Empowerment 2003. Genetic Databases—Assessing the Benefits and the Impact on Human Rights and Patient Rights (WHO, Geneva, 2003). http://www.law.ed.ac.uk/ahrb/publications/online/whofinalreport.rtf (Accessed on August 31, 2004).

  4. European Commission. Ethical, Legal and Social Implications of Genetic Testing: Research, Development and Clinical Applications (EC, Brussels, 2004). http://europa.eu.int/comm/research/conferences/2004/genetic/pdf/report_en.pdf (Accessed on August 31, 2004).

  5. Human Genome Organization. Genome Digest 86, 1 (1998). http://www.gene.ucl.ac.uk/hugo/sampling.html (Accessed on August 31, 2004).

  6. World Medical Association. Declaration on Ethical Considerations Regarding Health Databases (WMA, Washington, DC, 2002). http://www.wma.net/e/policy/d1.htm (Accessed on August 31, 2004).

  7. Buchanan, A. et al. Kennedy Inst. Ethics J. 12, 1–15 (2002).

    Article  Google Scholar 

  8. Council for International Organizations of Medical Sciences. International Ethical Guidelines for Biomedical Research Involving Human Subjects (CIOMS, Geneva, Switzerland, November 2002). http://www.cioms.ch/frame_guidelines_nov_2002.htm (Accessed on August 31, 2004).

  9. Council of Europe, Steering Committee on Bioethics. Proposal for an Instrument on the Use of Archived Human Biological Materials in Biomedical Research, Article 2 (COE, Strasbourg, France, October 17, 2002).

  10. European Society of Human Genetics. Data Storage and DNA Banking for Biomedical Research: Technical, Social and Ethical Issues (ESHG, Birmingham, UK, November 2001). http://www.eshg.org/ESHGDNAbankingrec.pdf (Accessed on August 31, 2004).

  11. Australian Law Reform Commission and Australian Health Ethics Committee. Essentially Yours: The Protection of Human Genetic Information in Australia (Commonwealth of Australia, Canberra, Australia, March 14, 2003). http://www.austlii.edu.au/au/other/alrc/publications/reports/96/ (Accessed on September 10, 2004).

  12. Medical Research Council of Canada, Natural Science and Engineering Research Council of Canada, Social Science and Humanities Research Council of Canada. Tri-Council Policy Statement—Ethical Conduct for Research Involving Humans (with 2000 and 2002 updates) (Public Works and Government Services Canada, Ottawa, Canada, 2003). http://www.pre.ethics.gc.ca/english/pdf/TCPS%20June2003_E.pdf (Accessed on April 19, 2004).

  13. Canadian Institutes of Health Research Privacy Advisory Committee. Guidelines for Protecting Privacy and Confidentiality in the Design, Conduct and Evaluation of Health Research: Best Practices, Consultation Draft (Public Works and Government Services Canada, Ottawa, Canada, 2004) http://www.cihr-irsc.gc.ca/e/pdf_22427.htm (Accessed on September 6, 2004).

  14. France, Loi ordinaire 2004-801 du 06 aoÛt 2004 relative à la protection des personnes physiques à l'égard des traitements de données à caractère personnel et modifiant la loi n° 78-17 du 6 janvier 1978 relative à l'informatique, aux fichiers et aux libertés, adopted Act no. 2004-801, August 6, 2004. http://www.legifrance.gouv.fr/imagesJOE/2004/0807/joe_20040807_0182_0002.pdf (Accessed on July 19, 2005).

  15. Israel; Genetic Information Law, 5761–2000, December 13th 2000. http:jewishvirtuallibrary.org/jsource/Health/GeneticInformationLaw.pdf (Accessed on July 19, 2005).

  16. Israel Academy of Sciences and Humanities, Bioethics Advisory Committee. Population-Based Large-Scale Collections of DNA Samples and Databases of Genetic Information (Israel Academy of Sciences and Humanities, Jerusalem, Israel, December 2002). http://www.academy.ac.il/bioethics/english/report2/Report2-e.html (Accessed on July 19, 2005).

  17. United Kingdom; Data Protection Act 1998 (U.K.), 1998, c. 29, s. 1(1). http://www.opsi.gov.uk/acts/acts1998/19980029.htm (Accessed on July 19, 2005).

  18. Department of Health. Use of Human Organs and Tissue: A Draft Interim Statement for Consultation (Department of Health, London, UK, January 2002). http://www.dh.gov.uk/assetRoot/04/10/92/73/04109273.pdf (Accessed on July 19, 2005).

  19. Medical Research Council. Human Tissue and Biological Samples for Use in Research: Operational and Ethical Guidelines (MRC, London, UK, April 2001). http://www.mrc.ac.uk/pdf-tissue_guide_fin.pdf (Accessed on July 19, 2005).

  20. The Wellcome Trust, Medical Research Council, and Department of Health. UK Biobank Ethics and Governance Framework, Version 1.0 (For Comment), (UK Biobank, Manchester UK, September 2003). http://www.ukbiobank.ac.uk/docs/egf-comment-version.doc (Accessed on July 19, 2005).

  21. German National Ethics Council. Biobanks for Research, Opinion (German National Ethics Council, Berlin, Germany, 2004). http://www.ethikrat.org/_english/publications/Opinion_Biobanks-for-research.pdf (Accessed on September 6, 2004).

  22. Office for Human Research Protections, Department of Health and Human Services. Guidance on Research Involving Coded Private Information or Biological Specimens (OHRP, Rockville, USA, August 2004). http://www.hhs.gov/ohrp/humansubjects/guidance/cdebiol.pdf (Accessed on January 20, 2005).

Download references

Acknowledgements

This research was funded by Canadian Institutes of Health Research (Institute of Genetics) and Génome Québec/Canada.

Author information

Authors and Affiliations

Authors

Rights and permissions

Reprints and permissions

About this article

Cite this article

Knoppers, B., Saginur, M. The Babel of genetic data terminology. Nat Biotechnol 23, 925–927 (2005). https://doi.org/10.1038/nbt0805-925

Download citation

  • Issue Date:

  • DOI: https://doi.org/10.1038/nbt0805-925

This article is cited by

Search

Quick links

Nature Briefing

Sign up for the Nature Briefing newsletter — what matters in science, free to your inbox daily.

Get the most important science stories of the day, free in your inbox. Sign up for Nature Briefing