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The Ethics and Governance of Human Genetic Databases
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Book description

The Medical Biobank of Umeå in Sweden, deCODE's Health Sector Database in Iceland, the Estonian Genome Project and the UK Biobank contain health data and genetic data from large populations. Some include genealogical or lifestyle information. They are resources for research in human genetics and medicine, exploring interaction between genes, lifestyle, environmental factors and health and diseases. The collection, storage and use of this data raise ethical, legal and social issues. In this book, first published in 2007, bioethics scholars examine whether existing ethical frameworks and social policies reflect people's concerns, and how they may need to change in light of new scientific and technological developments. The ethical issues of social justice, genetic discrimination, informational privacy, trust in science and consent to participation in database research are analyzed, whilst an empirical survey, conducted in the four countries, demonstrates public views of privacy and related moral values in the context of human genetic databases.


'Rarely does a book comprise so many large and growing legal questions. The Ethics and Governance of Human Databases is a very worthy book which addresses issues that are opening up every day - sometimes under our feet.'

Source: Law and Politics Book Review

'The book presents a truly interdisciplinary investigation containing, as it does, input from disciplines of philosophy, law and sociology. The authors are amongst the most recognised in the research field and the book benefits, as does the reader, from their collective knowledge expertise. …This book provides a comprehensive account of the key issues at stake with regards to the ethics and governance of HGD's. … A major strength of the book is that it reflects on actual or proposed HGD initiatives, providing a 'real life' dimension to most of the discussion. … It is a welcome addition to the HGD literature.'

Source: SCRIPT-ed

'The book is a very rich source to learn more about sociological, legal and ethical issues concerning the HGDs in the four countries. … Wherever the future of HDGs lies, the book is an authentic contribution for the struggle to find adequate legal, ethical and socio-political solutions in Europe.'

Source: Medicine, Health Care and Philosophy: A European Journal

'… a useful resource …'

Source: European Law Journal

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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, (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, (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
Council Directive 97/80/EC of 15 December 1997 on the burden of proof in cases of discrimination based on sex, OJ 1998 No. L014, 20 January 1998
Council of Europe Recommendations
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National legislation
Human Genes Research Act 2000 (Inimgeeniuuringute seadus, RT I 2000, 104, 685), Estonian Parliament
Act on Biobanks no. 110/2000 (Lög um lífsynasöfn), Icelandic Parliament, (accessed on 12 February 2006)
Act on a Health Sector Database no. 139/1998 (Lög um gagnagrunn á heilbrigdissvidi), Icelandic Parliament, (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
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Police Data Registers Act 1998 (Polisdatalagen 1998:622), Swedish Parliament
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Criminal Justice Act 2003, UK Parliament
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Council of Europe
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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), (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
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
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Center for Disease Control, ‘Consent for CDC Research: A Reference for Developing Consent Forms and Oral Scripts’ (1998), (accessed on 27 February 2006)
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World Medical Association Declaration on Ethical Considerations regarding Health Databases, 53rd WMA General Assembly, Washington, DC, October 2002, (accessed on 24 May 2006)
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Chatterton v. Gerson [1981] QB 432; [1981] 1 All ER 257
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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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