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Læknablaðið - 15.05.2005, Page 42

Læknablaðið - 15.05.2005, Page 42
FRÆÐIGREINAR / GAGNAGRUNNUR 7. Annas G. Rules for Research on Human Genetic Variation - Lessons from Iceland. NEJM 2000; 342:1830-3. 8. Lög um gagnagrunn á heilbrigðissviði nr. 139/1998. 9. Miðlægur gagnagrunnur á heilbrigðissviði. Spurningar og svör. Maí 1999:3. www.landlaeknir.is/Uploads/FileGallery/Heil- brigdistolfraedi/GagnagrJsl.pdf 10. Lög um persónuvernd og meðferð persónuupplýsinga nr. 77/2000. 11. Lög um lífsýnasöfn nr. 110/2000. 12. Lög um réttindi sjúklinga nr. 74/1997. 13. Reglugerð heilbrigðisráðuneytis um gagnagrunn nr. 32/2000, grein 32. 14. Lewontin R. People are not commodities. New York Times, 1999:23. janúar. 15. Gulcher J, Stefánsson K. The Icelandic Healthcare Database and Informed Consent. NEJM 2000; 342:1827-30. 16. Beauchamp, TL, Childress, J. Principles of Biomedical Ethics. Oxford University Press, 1989: 318. 17. Guðmundsdóttir ML, Nordal S. Varðveisla persónuupplýsinga og traust til erfðavísinda - viðhorf almennings. Rannsóknir í Félagsvísindum. Háskólaútgáfan 2004,233-42. 18. European Data Protection Directive (95/46). 19. Recommendation No. R (97) 5 (50). 20. www.personuvernd.is 21. The American Society of Human Genetics Report. Statement on Informed Consent for Genetic Research. Am J Hum Genet 1996; 59: 471-4. 22. Clayton EW, Steinberg KK, Khoury MJ, Thomson E, Andrews L, Kahn MJ, et al. Informed Consent for Genetic Research on Stored Tissue Samples. JAMA 1995; 274:1786-92. 23. Arnason E. Personal Identifiability in the Icelandic Health Sector Database. The Journal of Information, Law Technology 2002; 2. http://elj.warwick.ac.uk/jilt/02-2/arnason.html. Skoðað 27. nóvember 2002. 24. Meyer A, Zeller AC. The Icelandic Health Sector Database and the Right to Privacy. Human Rights and Law Journal 2000; 21:404. 25. Kaye J. Genetic Research on the UK population - do new principles need to be developed? TRENDS in Molecular Medicine 2001; 7: 529. 26. Tulinius, H. Trúnaður eða leynd. Morgunblaðið, 18. apríl 1998. 27. www.icemed.is/frettir/yfirlysingLI-IE.htm (skoðað 13. febrúar 2004). 28. Macklin, R. Against Relativism. Oxford University Press, 1999: 203. 29. Pálsson, G, Rabinow, P. The case of a national human genome project. Anthropology Today 1999; 15:14-8. 30. Pálsson G, Rabinow P. The Icelandic Genome Debate. TRENDS in Biotechnology 2001; 19:166-71. 31. Morgunblaðið, 18. nóvember 1998. 32. Kymlicka W. Contemporary Political Philosophy. An Intro- duction. Oxford University Press, 2002: 290. 33. Árnason V, Árnason G. Informed, Democratic Consent? The Case of the Icelandic Database. Trames 8 (2004), 164-177. 34. Brody B. The Ethics of Biomedical Research. Oxford Uni- versity Press, 1998: 60. 35. Kaye J, Martin P. Safeguards for research using large scale DNA collections. BMJ 2000; 321:1146. 36. The World Medical Association Declaration on Ethical Con- siderations regarding Health Databases, grein 17. www.wma. net/e/policy/dl. htm 37. 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The Nazi Doctors and the Nuremberg Code. Oxford University Press 1992. 44. Chadwick R. Informed consent and genetic research. Informed Consent in Medical Research. BMJ Books, 2001: 210. 45. Gostin LO, Hodge JG. Genetic Privacy and the Law: An End to Genetic Exceptionalism. Jurismetrics 1999; 40: 21-57. 46. Greely HT. Breaking the Stalemate: A Prospective Regulatory Framework for Unforeseen Research Uses of Human Tissue Samples and Health Information. Wake Forest Law Review 1999; 34: 737-66. 47. O Neill O. Informed Consent and Genetic Information. Stud Hist Phil Biol Biomed Sci 2001; 32: 689-704. 48. Árnason V. Coding and Consent. Moral Challenges of the Database Project in Iceland. Bioethics 2004; 18:39-61. 49. Caulfield T, Upshur RE, Daar A. DNA databanks and con- sent: A suggested policy option involving an authorization model. BMC Medical Ethics 2003; 4: www.biomedcentral. com/1472-6939/4/1 50. Sveinsson, S. Viðræður Læknafélags íslands og íslenskrar erfðagreiningar. Læknablaðið 2000; 86: 522. 51. Winickoff, DE. Biosamples, Genomics and Human Rights: Context and Content of Iceland’s Biobanks Act. JBioLaw Business 2000; 4:11-7. 52. www.decode.com/main/view.jsp?branch=3617 53. www. visindasidanefnd. is 54. Pálsson G, Harðardóttir K. For Whom the Cell Tolls. Debates about Biomedicine. Current Anthropology 2002; 43: 275. 55. Intemational Bioethics Committee of UNESCO: Draft Report on Collection, Treatment, Storage and Use of Genetic Data. 2001. 56. Kristinsson S. Siðfræði rannsókna og siðanefndir. í Halldórs- dóttir S. ritstj. Aðferðafræði rannsókna í heilbrigðisvísindum. Akureyri: Háskólinn á Akureyri 2002,161-79. 57. Kristinsson S. Databases and Informed Consent: Can Broad Consent Legitimate Research? í Árnason G, Nordal S, Árna- son V. ritstj. Blood and Data. Ethical, Legal and Social Aspects of Human Genetic Databases. University of Iceland Press and Centre for Ethics 2004:111-9. 58. Abbot, A. „Strengthened“ Icelandic bioethics committee comes under fire. Nature 1999; 400: 602 59. Geirsson RT. Vísindasiðanefnd: Nýtt ferli sem ekki fór í besta farveg. Læknablaðið 1999; 85: 916-20. 60. Rafnar ÁJ. Vísindastarf og löggjöf. Morgunblaðið, 29. janúar 438 Læknablaðið 2005/91

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