For more information on the UK Biobank project, see UK Biobank, at <http://www.ukbiobank.ac.uk> (last visited June 1, 2004).
2.
Estonian Parliament, Human Gene Research Act, Estonia, December 13, 2000, entered into force on January 8, 2003, available at <http://www.legaltext.ee/text/en/X50010.htm> (last visited May 5, 2004) [hereinafter HGRA].
Icelandic Supreme Court, Ragnhildur Gumundsdóttir v. The State of Iceland, No. 151/2003, available through the official website of Mannvernd, at <http://www.mannvernd.is/english/> (last visited June 1, 2004). On November 27, 2003, the Icelandic Supreme Court held that some provisions of the Act on a Health Sector Database violated Paragraph 1 of Article 71 of the Constitution (right to privacy). The court therefore concluded that the appellant's request for her father's health information not to be included in the database should be granted.
To whom do you confide the delicate task of approving and monitoring a population research project? To a designated local REB, a national REB, or multiple REBs?
Network of Applied Genetic Medicine, Statement of Principles on the Ethical Conduct of Human Genetic Research Involving Populations, Montreal (QC), 2003, at <http://www.rmga.qc.ca/en/index.htm> (last visited June 1, 2004).
See, e.g., The Estonian Genome Project, “The Estonian Genome Project Foundation and EGeen Agreed upon Year 2004 Financing,”News and Articles (April 5, 2004), at <http://www.geenivaramu.ee/index.php?show=uudised&id=156&lang=eng> (last visited February 15, 2005).
It is worth mentioning that the Scottish Executive has agreed to invest £500,000 in the project and that the project will ultimately be self-financed. See, The UK Biobank, a Study of Genes, Environment and Health, at <http://www.ukbiobank.ac.uk/Documents/long%20briefing%20paper.pdf>, at 2 (last visited June 18, 2004).
See, notably, the summary of comments on the UK Biobank Ethics and Governance Framework. Many respondents (individuals or organization) outlined that in order for the UK Biobank project to receive public support and trust, the powers of the Ethics and Governance Council should include the right to veto certain uses, and its decisions on profits and its redistribution should have some weight. UK Biobank, UK Biobank Ethics and Governance Framework: Summary of Comments on Version 1.0, (May 2004), at <http://www.ukbiobank.ac.uk/Documents/Biobank%20EGF%20Report%20Summary%20of%20Comments.pdf> (last visited February 15, 2005).
27.
The Wellcome Trust, the Medical Research Council, the Department of Health, UK Biobank Ethics and Governance Framework, For Comment (September 24, 2003), at <http://www.ukbiobank.ac.uk/documents/egf-comment-version.doc> (last visited February 15, 2005) at 23.
28.
Act on a Health Sector Database, supra note 4.
29.
Id. at Art.1.
30.
Icelandic Supreme Court, Ragnhildur Gumundsdóttir v. The State of Iceland, No. 151/2003, available through the official website of Mannvernd, at <http://www.mannvernd.is/english/> (last visited June 1, 2004).
31.
Act on Biobanks, supra note 6.
32.
Id. at Art. 14.
33.
DeCode Genetics, “DeCode Genetics, Inc. Code of Business Conduct and Ethics,”available through DeCode Genetics, at <http://www.decodegenetics.com> (last visited June 5, 2004).
34.
For instance, the Tongan project, a South-Pacific population genetic research project developed by two private companies was mainly opposed and finally abandoned for privacy and confidentiality issues. See, e.g., BurtonB., “Opposition Stalls Genetic Profiling Plan for Tonga,”Inter Press Service (February 18, 2002), at <http://www.hi.si/∼elsagen/tonga.html> (last visited February 29, 2005); see also BarkhamP., “Faraway Tonga Cashes in on its Gene Pool Secrets,”Guardian, November 23, 2000; GriggsK., “Tonga Sells its Old, New Genes”Wired, November 27, 2000at <http://www.wired.com/news/medtech/0,1286,40354,00.htm> (last visited February 15, 2005).
35.
Estonian Parliament, Personal Data Protection Act (February 12, 2003, entered into force on October 1, 2003), at <http://www.legaltext.ee/text/en/X70030.htm> (last visited February 15, 2005).
36.
See Hgra, Para. 7.
37.
See Hgra, Para. 31, which amends Para. 1281 of the Criminal Code.
38.
See Estonian Parliament, Data Protection Act, February 12, 2003, (RT I, 2003, 26, 158), at <http://www.legaltext.ee/text/en/X70030.htm> (last visited February 15, 2005) chapters 8 and 9. Furthermore, in the event of wrongful disclosure of a subject's identification, the participant can, by virtue of paragraphs 10(2) and 21 of the HGRA, require that his or her biological material and data be destroyed.
39.
Iceland Minister of Health and Social Security, Act on the Protection of Individuals with Regard to the Processing of Personal Data, No 77/2000, Iceland (May, 2000), at <http://www.mannvernd.is/english/laws/Act.DataProtection.html> (last visited February 15, 2005).
40.
Id. at Art. 35, Para. 4, Art. 37, Para. 2 and 4, and Arts. 38 to 43.
41.
Id. at Arts, 11 and 12.
42.
Act on Biobanks, Arts. 14 and 15. See also Arts. 41 to 43 of the Act on the Protection of Individuals with regard to the Processing of Personal Data. According to these provisions, violation of the terms of the Act can lead to daily penalties, criminal sanctions or compensation of the individual subject.
Quebec Government, An Act Respecting Access to Documents held by Public Bodies and the Protection of Personal Information, R.S.Q., Chapter A-2.1, at <http://www.canlii.org/qc/laws/sta/a-2.1/20040323/whole.html> (last visited June 19, 2004) art.125; Quebec Government, Health Insurance Act, R.S.Q., Chapter A-29, at <http://www.canlii.org/qc/laws/sta/a-29/20040323/whole.html> at Art. 63 (last visited June 19, 2004). The RAMQ keeps on file all the medical services that are paid for by the state for all Quebec citizens.
World Medical Association, Declaration on Ethical Considerations Regarding Health Databases (October 6, 2002), at <http://www.wma.net/e/policy/d1.htm> (last visited February 15, 2005) §§ 30–31.
48.
It is to be noted that in the U.K., the Human Genetics Commission suggested that unlawful disclosure be criminalized. Human Genetics Commission, Inside Information: Balancing the Interests in the Use of Personal Genetic Data, May 2002, at 105.
49.
The reproduction of this diagram was authorized by the UK Biobank Management Board, diagram available on UK Biobank website.
The reproduction of this diagram was authorized by Doctor Claude Laberge, Diagram available on Cartagène website, at <http://www.cartagene.qc.ca/img/CaG.UPDATE.NOV.jpg> (last visited July 7, 2004).
