Solidarity and equity: new ethical frameworks for genetic databases (original) (raw)

References

  1. Emery, A. E. H. in Registers for the Detection and Prevention of Genetic Disease (eds Emery, A. E. H. & Miller, J. R.) 53–63 (Stratton, New York, 1976).
    Google Scholar
  2. Merritt, A. D., Kang, K. W., Conneally, P. M., Gersting, J. M. & Rigo, T. in Registers for the Detection and Prevention of Genetic Disease (eds Emery, A. E. H. & Miller, J. R.) 31–51 (Stratton, New York, 1976).
    Google Scholar
  3. Vlietinck, R. F. & Van den Berghe, H. in Registers for the Detection and Prevention of Genetic Disease (eds Emery, A. E. H. & Miller, J. R.) 65–71 (Stratton, New York, 1976).
    Google Scholar
  4. Hecht, F. in Registers for the Detection and Prevention of Genetic Disease (eds Emery, A. E. H. & Miller, J. R.) 73–86 (Stratton, New York, 1976).
    Google Scholar
  5. Hook, E. B. in Registers for the Detection and Prevention of Genetic Disease (eds Emery, A. E. H. & Miller, J. R.) 9–29 (Stratton, New York, 1976).
    Google Scholar
  6. Williams, R. R. et al. in Genetic Approaches to Coronary Heart Disease and Hypertension (eds Berg, K., Bulyzhenkov, V., Christen, Y. & Corvol, P.) 8–19 (Springer, Berlin, 1991).
    Book Google Scholar
  7. Scandinavian Simvastatin Survival Study Group. Randomised trial of cholesterol lowering in 4444 patients with coronary heart disease: the Scandinavian Simvastatin Survival Study (4S). Lancet 344, 1383–1389 (1994).
  8. Weijer, C. Protecting communities in research: philosophical and pragmatic challenges . Cambr. Quart. Hlthcare Ethics 8, 501– 513 (1999).
    CAS Google Scholar
  9. Norges Offentlige Utredninger in Pseudonyme helseregistre (Statens Forvaltningstjeneste, Seksjon Statens Trykning, Oslo, 1993).
  10. North Cumbria Community Genetics Project. Report 1996–2000 (Westlakes Research Institute, Cumbria, 2000).
  11. Farrar, S. UK considers national gene database. Times Higher Education Suppl. 11 February (2000).
  12. Fears, R. & Poste, G. Building population genetics resources using the U.K. NHS. Science 284, 267– 268 (1999).
    Article CAS Google Scholar
  13. Chadwick, R. The Icelandic database – do modern times need modern sagas? BMJ 319, 441–444 ( 1999).
    Article CAS Google Scholar
  14. Chadwick, R. in Informed Consent in Medical Research (eds Doyal, L. & Tobias J. S.) 203–210 (BMJ Books, London, 2001).
    Google Scholar
  15. Medical Research Council. in Human Tissue and Biological Samples for Use in Research: Report of the Medical Research Council Working Group to Develop Operational and Ethical Guidelines (MRC, London, 1999).
  16. National Bioethics Advisory Commission. Research Involving Human Biological Materials: Ethical Issues and Policy Guidance (National Bioethics Advisory Commission, Rockville, Maryland, 1999).
  17. Chadwick, R. in Essential Practice in Patient-Centred Care (eds Fulford, K. W. M., Ersser, S. & Hope, T.) 40–49 (Blackwell Science, Oxford, 1996).
    Google Scholar
  18. Annas, G. J. Rules for research on human genetic variation — lessons from Iceland . N. Engl. J. Med. 342, 1830– 1833 (2000).
    Article CAS Google Scholar
  19. Knoppers, B. M. Presentation to the Bordeaux Colloquium on Science, Ethics and the Life Sciences (23 June 2000) (in the press).
    Google Scholar
  20. Berg, K. in Proceedings of the 2nd Symposium of the Council of Europe on Bioethics 122–143 (Council of Europe Press, Strasbourg, 1994).
    Google Scholar
  21. Human Genome Organisation (HUGO) Ethics Committee . Statement on Benefit-Sharing (Human Genome Organisation, London, 2000).
  22. O'Neill, O. Presentation (Greenwall Lecture) to the American Society for Bioethics and Humanities October 1999 (in the press).
    Google Scholar
  23. Kaye, J. & Martin, P. Safeguards for research using large scale DNA collections. BMJ 321, 1146– 1149 (2000).
    Article CAS Google Scholar
  24. Gulcher, J. R. & Stefansson, K. The Icelandic healthcare database and informed consent. N. Engl. J. Med. 342, 1827–1830 (2000).
    Article CAS Google Scholar
  25. Gulcher, J. R., Kristjansson, K., Gudbjartsson, H. & Stefansson, K. Protection of privacy by third-party encryption in genetic research in Iceland . Eur J Hum Genet. 8, 739– 742 (2000).
    Article CAS Google Scholar
  26. Human Genome Organisation (HUGO) Ethics Committee. Statement on the principled conduct of genetic research. Genome Digest 3, 2–3 ( 1996).

Download references