The Ethics and Governance of Human Genetic Databases: European Perspectives

Matti Häyry; Ruth Chadwick; Vilhjálmur Árnason; Gardar Árnason

doi:10.1017/CBO9780511611087

References

Bibliography

International legal instruments

UN Conventions

Agreement on Trade Related Aspects of International Property Rights (TRIPS), 15 April 1994, 1869 UNTS 299, (1994) 33 ILM 1197

Convention on Biological Diversity (excluding human genetic resources), Rio de Janeiro, 5 June 1992, in force 29 December 1993, 1760 UNTS 79; (1992) 31 ILM 818

Convention on the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4 April 1997, ETS 164, http://conventions.coe.int/treaty/en/treaties/html/164.htm (accessed on 18 February 2006)

International Covenant on Economic, Social and Cultural Rights, 16 December 1966, in force 3 January 1976, 993 UNTS 3, (1976) 6 ILM 360, http://www.unhchr.ch/html/menu3/b/a_cescr.htm (accessed on 24 February 2006)

UN Declarations

International Declaration on Human Genetic Data, adopted by the General Conference of UNESCO at its 32nd Session on 16 October 2003

Universal Declaration on Bioethics and Human Rights, adopted by the General Conference of UNESCO at its 33rd Session on 19 October 2005

Universal Declaration on the Human Genome and Human Rights, adopted by the General Conference of UNESCO at its 29th Session on 11 November 1997

EC Directives

Council Directive 95/46/EC of 24 October 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data, OJ 1995 No. L281, 23 November 1995

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Council of Europe Recommendations

Council of Europe, Recommendation No. R (92) 1 of the Committee of Ministers to member states. The use of analysis of deoxyribonucleic acid (DNA) within the framework of the criminal justice system, adopted by the Committee of Ministers on 10 February 1992 at the 47th meeting of the Ministers' Deputies

National legislation

Estonia

Human Genes Research Act 2000 (Inimgeeniuuringute seadus, RT I 2000, 104, 685), Estonian Parliament

Iceland

Act on Biobanks no. 110/2000 (Lög um lífsynasöfn), Icelandic Parliament, http://ministryofhealth.is/laws-and-regulations/nr/31 (accessed on 12 February 2006)

Act on a Health Sector Database no. 139/1998 (Lög um gagnagrunn á heilbrigdissvidi), Icelandic Parliament, http://ministryofhealth.is/laws-and-regulations/nr/659 (accessed on 12 February 2006)

Act on Patients' Rights no. 74/1997 (Lög um réttindi sjúklinga), Icelandic Parliament

Act on a Police Department's Genetic Database no. 88/2001 (Lög um erfdaefnisskrá lögreglu), Icelandic Parliament

Constitution of the Republic of Iceland 1944 (Stjórnarskrá lydveldisins Íslands 33/1944), http://www.government.is/constitution (accessed on 20 February 2006)

Sweden

Biobanks in Medical Care Act 2002:297 (Lag om biobanker i hälso- och sjukvården m.m.), Swedish Parliament

Ethical Review Act Concerning Research Involving Humans 2003:460 (Lag om etikprövning av forskning som avser människor), Swedish Parliament

Police Data Registers Act 1998 (Polisdatalagen 1998:622), Swedish Parliament

Anti-terrorism Crime and Security Act 2001, UK Parliament

Criminal Justice Act 2003, UK Parliament

Criminal Justice and Police Act 2001, UK Parliament

Criminal Justice and Public Order Act 1994, UK Parliament

Data Protection Act 1998, UK Parliament

Health and Social Care Act 2001, UK Parliament

Human Organ Transplants Act 1989, UK Parliament

Human Tissue Act 2004, UK Parliament

Police and Criminal Evidence Act 1984, UK Parliament

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European Commission, 25 Recommendations on the Ethical, Legal and Social Implications of Genetic Testing, Brussels: EC Directorate-General for Research, 2004

European Commission,European Governance. A White Paper, Brussels: European Commission, 2001

European Commission,Innovation Tomorrow. Innovation Policy and the Regulatory Framework: Making Innovation an Integral Part of the Broader Structural Agenda, European Commission, Innovation Papers, 28, Brussels: European Commission, 2002

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European Commission,Special Eurobarometer 225, ‘Social Values, Science and Technology’, Brussels: European Commission, June 2005

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Council of Europe

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Estonia

Bill on Human Genes Research, submitted to the Estonian Parliament, Notes to the Bill, http://web.riigikogu.ee/ems/saros-bin/mgetdoc?itemid=003672949&login=proov&password=&system=ems&server=ragne1 (in Estonian) (accessed on 21 February 2006)

Estonian Genome Project, Gene Donor Information Leaflet, http://www.geenivaramu.ee/index.php?lang=eng&sub=75 (accessed on 21 October 2003)

Iceland

Agreement Between the Minister for Health and Social Security and Islensk Erfdagreining Ehf. Relating to the Issue of an Operating Licence for the Creation and Operation of a Health Sector Database, 21 January 2000

Bill on a Health Sector Database, submitted to the Icelandic Parliament at its 123rd session, 1998–1999, Notes to the Bill, s. I(2), http://www.mannvernd.is/english/laws/HSD.bill.html (accessed on 21 February 2006)

Operation Licence for the Creation and Operation of a Health Sector Database, Annex B. Transfer of Data to the Health Sector Database (Rekstrarleyfi til ad gera og starfrækja gagnagrunn á heilbrigdissvidi, vidauki B. Flutningur upplysinga í gagnagrunn á heilbrigdissvidi), Icelandic Ministry of Health and Social Security, January 2000

Sweden

Agreement Between the State and the Swedish Insurance Association Regarding Genetic Examinations, 31 May 1999 (Avtal mellan staten och Sveriges Försäkringsförbund avseende genetiska undersökningar av den 31 maj 1999)

Code of Judicial Procedure 1942:740 (Rättegångsbalk), Swedish Parliament

SOU 2004:20 Genetics, Integrity and Ethics, Final Report from the Committee on Genetic Integrity (SOU 2004:20 Genetik, integritet och etik. Slutbetänkande av Kommittén om genetisk integritet)

Swedish Medical Research Council (MFR), ‘Research Ethics Guidelines for Using Biobanks, Especially Projects Involving Genome Research’, adopted by the Swedish Medical Research Council in June 1999 (Dnr 1999–570)

Department of Health, Genetics White Paper, Our Inheritance, Our Future – Realising the Potential of Genetics in the NHS, June 2003, Cm 5791

House of Lords Select Committee on Science and Technology, Science and Society, Third Report, London: HMSO, 2000, http://www.publications.parliament.uk/pa/ld199900/ldselect/ldsctech/38/3801.htm (accessed on 12 February 2006)

Information Commissioner, The Employment Practices Data Protection Code: Part 4: Information about Workers' Health, draft, 2004

Medical Research Council, Human Tissue and Biological Samples for Use in Research, Operational and Ethical Guidelines, April 2001

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UK Biobank, ‘The Ethics and Governance Framework’, http://www.ukbiobank.ac.uk/ethics/efg.php (accessed on 11 February 2006)

UK Biobank,Ethics and Governance Framework background document, 2003

USA

45 Code of Federal Regulations (USA) 46.116, http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.htm (accessed on 24 May 2006)

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World Medical Association Declaration on Ethical Considerations regarding Health Databases, 53rd WMA General Assembly, Washington, DC, October 2002, http://www.wma.net/e/policy/d1.htm (accessed on 24 May 2006)

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Cases

Chatterton v. Gerson [1981] QB 432; [1981] 1 All ER 257

Gillick v. West Norfolk and Wisbech Area Health Authority [1986] 1 AC 112; [1985] 3 All ER 402

Her Majesty's Advocate v. Stephan Robert Kelly [2001] ScotHC 7

Icelandic Supreme Court Decision of 27 November 2003 in case no. 151/2003 (R. Gudmundsdottir v. The State of Iceland), http://www.haestirettur.is/domar?nr=2566 (accessed on 18 February 2006)

Midwife v. Örebro County Council, Labour Court 1996 no. 41 (Sweden)

Midwife v. Örebro County Council, Labour Court 2001 no. 13 (Sweden)

Pate v. Threkel 661 So.2d 278 Fla. (1995)

R (on the application of Marper) v. Chief Constable of South Yorkshire [2002] EWCA Civ 1275, [2003] HRLR 1 (CA)

Re C (Adult: Refusal of treatment) [1994] 1 WLR 290; [1994] 1 All ER 819

Swedish Supreme Administrative Court, RÅ 2004 ref 102

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The Ethics and Governance of Human Genetic Databases

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