Bibliography

Matti Häyry; Ruth Chadwick; Vilhjálmur Árnason; Gardar Árnason

doi:10.1017/CBO9780511611087.028

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)

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

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, 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

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, 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)

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

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

European Commission,Life Sciences and Biotechnology – A Strategy for Europe, Brussels: European Commission, 2002

European Commission,Special Eurobarometer 154, ‘Europeans, Science and Technology’, Brussels: European Commission, December 2001

European Commission,Special Eurobarometer 224, ‘Europeans, Science and Technology’, Brussels: European Commission, June 2005

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

Gallup Organization Hungary, Candidate Countries Eurobarometer on Science and Technology, Cc-Eb 2002.3, Brussels: European Commission, 2003

Explanatory Report to the Convention for 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, unclassified CM (96) 175 final (Strasbourg: Council of Europe, Committee of Ministers, 1997)

Council for International Organizations of Medical Sciences (CIOMS), International Ethical Guidelines for Biomedical Research Involving Human Subjects, Geneva: CIOMS and WHO, 2002, http://www.cioms.ch/frame_guidelines_nov_2002.htm (accessed on 27 February 2006)

Council for International Organizations of Medical Sciences (CIOMS),International Guidelines for Ethical Review of Epidemiological Studies, Geneva: CIOMS, 1991, http://www.cdc.gov/od/ads/intlgui3.htm (accessed on 27 February 2006)

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)

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

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

National DNA Database Annual Report 2002/2003, London: Forensic Sciences Services, 2003

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

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

Center for Disease Control, ‘Consent for CDC Research: A Reference for Developing Consent Forms and Oral Scripts’ (1998), http://www.cdc.gov/od/ads/docs/consent.pdf (accessed on 27 February 2006)

President's Council on Bioethics, Beyond Therapy. Biotechnology and the Pursuit of Happiness. A Report by the President's Council on Bioethics, (US) President's Council on Bioethics, 2003

Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law No. 10, 2, Washington, DC: US Government Printing Office, 1949

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)

World Medical Association Declaration of Helsinki, Ethical Principles for Medical Research Involving Human Subjects, 52nd WMA General Assembly, Edinburgh, October 2000

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

Abbott, A., ‘Sweden Sets Ethical Standards for Use of Genetic “Biobanks” ’, Nature 400 (1999), 3CrossRef Google Scholar PubMed

Adam, B., Beck, U. and Loon, J. (eds.), The Risk Society and Beyond: Critical Issues for Social Theory, London: Sage, 2000CrossRef Google Scholar

Allen, A., ‘Genetic Privacy: Emerging Concepts and Values’, in Rothstein, , Genetic Secrets

Allen, A.,‘Privacy in American Law’, in Rössler, , Privacies, 19–39

Almarsdóttir, A. B., J. M. Traulsen and I. Björnsdóttir, ‘ “We Don't Have That Many Secrets” – The Lay Perspective on Privacy and Genetic Data’, in Árnason, Nordal and Árnason, , Blood and Data, 193–200

Altman, L. K., ‘Genomic Chief Has High Hopes, and Great Fears, for Genetic Testing’, New York Times, 27 June 2000, D6

Anderson, A., ‘In Search of the Holy Grail: Media Discourse and the New Human Genetics’, New Genetics and Society 21 (2002), 327–337CrossRef Google Scholar

Andrews, L. B., ‘Contacting Relatives and Recontacting Patients’, in Knoppers, Laberge and Hirtle, , Human DNA, 136–138

Angell, M., ‘The Truth About the Drug Companies’, New York Review of Books 51 (2004), 15 JulyGoogle Scholar

Annas, G. J., and S. Elias, ‘The Major Social Policy Issues Raised by the Human Genome Project’, in Annas, and Elias, , Gene Mapping, 10

Annas, G. J., and Elias, S. (eds.), Gene Mapping. Using Law and Ethics as Guides, Oxford: Oxford University Press, 1992Google Scholar

Arendt, H., The Human Condition, Chicago: University of Chicago Press, 1958Google Scholar

Árnason, G., Nordal, S. and Árnason, V. (eds.), Blood and Data: Ethical, Legal and Social Aspects of Human Genetic Databases, Reykjavík: University of Iceland Press and Centre for Ethics, 2004Google Scholar

Árnason, V., ‘Coding and Consent. Moral Challenges of the Database Project in Iceland’, Bioethics 18 (2004), 39–61CrossRef Google Scholar PubMed

Árnason, V., ‘Sensible Discussion in Bioethics: Reflections on Interdisciplinary Research’, Cambridge Quarterly of Healthcare Ethics 14 (2005), 322–328CrossRef Google Scholar PubMed

Árnason, V., and Árnason, G., ‘Informed Democratic Consent? The Case of the Icelandic Database’, Trames 8 (2004), 164–177Google Scholar

Ashcroft, R. E., Ethical, Legal and Social Issues Facing the West London Database Project: A Review of the Literature, London: NHS Executive London Regular Office Research and Development Office, 2001Google Scholar

Ashcroft, R. E., ‘From Public Interest to Political Justice’, Cambridge Quarterly of Healthcare Ethics 13 (2004), 20–27CrossRef Google Scholar PubMed

Austin, M. A., Harding, S. and McElroy, C., ‘Genebanks: A Comparison of Eight Proposed International Genetic Databases’, Community Genetics 6 (2003), 37–45Google Scholar PubMed

Austin, M. A., Harding, S. and McElroy, C., ‘Monitoring Ethical, Legal, and Social Issues in Developing Population Genetic Databases’, Genetics in Medicine 5 (2003), 451–457CrossRef Google Scholar PubMed

Avise, J. C., The Genetic Gods: Evolution and Belief in Human Affairs, Cambridge, MA: Harvard University Press, 1998Google Scholar

Bahnsen, U., ‘Im Dickicht der Proteine’, Die Zeit, 13 July 2000Google Scholar

Baier, A., ‘Trust and Anti-Trust’, Ethics 96 (1986), 231–260CrossRef Google Scholar

Baier, A., ‘Trusting People’, Philosophical Perspectives 6 (1992), 137–153CrossRef Google Scholar

Barbour, R., and Kitzinger, J. (eds.), Developing Focus Group Research, London: Sage, 1999CrossRef Google Scholar

Barker, J. H., ‘Common-pool Resources and Population Genomics in Iceland, Estonia, and Tonga’, Medicine, Health Care and Philosophy 6 (2003), 133–144CrossRef Google Scholar PubMed

Bauer, M. W., and Gaskell, G. (eds.), Biotechnology – The Making of Global Controversy, Cambridge: Cambridge University Press, 2002Google Scholar

Beauchamp, T. L., and Childress, J. F., Principles of Biomedical Ethics, 1st edn, New York: Oxford University Press, 1979; 5th edn, New York: Oxford University Press, 2001Google Scholar

Begley, S., ‘Decoding the Human Body’, Newsweek, 10 April 2000, 52Google Scholar

Berg, K., ‘The Ethics of Benefit-sharing’, Clinical Genetics 59 (2001), 240–243CrossRef Google Scholar PubMed

Blume, P., Protection of Informational Privacy, Copenhagen: DJØF Publishing, 2002Google Scholar

Böckenförde, E.-W., ‘Die Bedeutung der Unterscheidung von Staat und Gesellschaft im demokratischen Sozialstaat der Gegenwart’, in Böckenförde, , Recht, Staat, Freiheit, 209–243

Böckenförde, E.-W., Recht, Staat, Freiheit, Frankfurt am Main: Suhrkamp, 1991Google Scholar

Bondeson, W. B., and Jones, J. W. (eds.), The Ethics of Managed Care: Professional Integrity and Patient Rights, Boston: Kluwer Academic Publishers, 2002CrossRef Google Scholar

Bradley, H., Gender and Power in the Workplace. Analysing the Impact of Economic Change, Basingstoke: Macmillan, 1999CrossRef Google Scholar

Breithaupt, H., ‘Pioneers in Medicine’, EMBO Reports 4 (2003), 1019–1021CrossRef Google Scholar

Brownsword, R., ‘Regulating Human Genetics: New Dilemmas For a New Millennium’, Medical Law Review 12 (2004), 14–39CrossRef Google Scholar

Brush, S. B., ‘Bioprospecting the Public Domain’, Cultural Anthropology 14 (1999), 535–555CrossRef Google Scholar

Buchanan, A., ‘An Ethical Framework for Biological Samples Policy: A Commissioned Paper’, in National Bioethics Advisory Commission (NBAC), Research Involving Human Biological Materials, vol. II, B1–B31

Callahan, D., False Hopes. Overcoming the Obstacles to a Sustainable, Affordable Medicine, New Brunswick, NJ: Rutgers University Press, 1999Google Scholar

Cambon-Thomsen, A., Sallee, C., Rial-Sebbag, E. and Knoppers, B., ‘Populational Genetic Databases: Is a Specific Ethical and Legal Framework Necessary?’, GenEdit III (1) (2005), http://www.humgen.umontreal.ca/int/GE_Arch_v.cfm?an=2005&no=1 (accessed on 13 March 2006)Google Scholar

Casado da Rocha, A., ‘Ethical Aspects of Human Genetic Databases: Distinctions on the Nature, Provision, and Ownership of Genetic Information’, Trames 8 (2004), 34–45Google Scholar

Caulfield, T., ‘Regulating the Commercialization of Human Genetics: Can We Address the Big Concerns?’, in Thompson, and Chadwick, , Genetic InformationCrossRef

Caulfield, T., Upshur, R. E. G. and Daar, A., ‘DNA Databanks and Consent: A Suggested Policy Option Involving an Authorization Model’, BMC Medical Ethics 4 (2003), http://www.biomedcentral.com/1472-6939/4/1 (accessed on 27 February 2006)CrossRef Google Scholar PubMed

Chadwick, R., Concise Encyclopedia of the Ethics of New Technologies, San Diego: Academic Press, 2001Google Scholar

Chadwick, R., ‘Genetics, Choice and Responsibility’, Health, Risk and Society 1 (1999), 293–300CrossRef Google Scholar

Chadwick, R., and Berg, K., ‘Solidarity and Equity: New Ethical Framework for Genetic Databases’, Nature Review Genetics 2 (2001), 318–321CrossRef Google Scholar

Chadwick, R., and Wilson, S., ‘Genomic Databases as Global Public Goods?’, Res Publica 10 (2004), 123–134CrossRef Google Scholar PubMed

Christman, J. (ed.), The Inner Citadel, New York: Oxford University Press, 1989Google Scholar

Cohen, A., ‘Scientific Team Crosses Genetic Frontier’, Globe and Mail, 27 June 2000Google Scholar

Conaghan, J., ‘Feminism and Labour Law: Contesting the Terrain’, in Morris, and O'Donnell, , Feminist Perspectives on Employment Law, 31–32

Condit, C. M., The Meanings of the Gene: Public Debates about Human Heredity, Madison, WI: University of Wisconsin Press, 1999Google Scholar

Corkery, J. (ed.), Governance: Concepts and Applications, Brussels: International Institute of Administrative Sciences, 1999Google Scholar

Cowley, G., and Underwood, A., ‘A Revolution in Medicine’, Newsweek, 10 April 2000, 62Google Scholar

Dawson, Cragg Ross, Public Perceptions of the Collection of Human Biological Samples, London: Wellcome Trust and Medical Research Council, 2000Google Scholar

Daniels, N., Just Health Care, Cambridge: Cambridge University Press, 1985CrossRef Google Scholar PubMed

Davis, D., Hastings Center report on Genetic Research and Communal Narratives, July/August 2004

Correa, Dios Vial J., and Sgreccia, E. (eds.), Identity and Statute of Human Embryo, Vatican City: Libreria Editrice Vaticana, 1998Google Scholar

de Ortúzar, M. G., ‘Towards a Universal Definition of “Benefit-Sharing” ’, in Knoppers, , Populations and Genetics, 473–486

DeCew, J. W., In Pursuit of Privacy: Law, Ethics and the Rise of Technology, Ithaca: Cornell University Press, 1997Google Scholar

Delanty, G., ‘Constructivism, Sociology and the New Genetics’, New Genetics and Society 21 (2002), 279–289CrossRef Google Scholar

Drechsler, H., Hilligen, W. and Neumann, F. (eds.), Gesellschaft und Staat. Lexikon der Politik, 10th edn, Munich: Franz Vahlen (C. H. Beck), 2003Google Scholar

Drechsler, W., ‘Good Governance’, in Drechsler, Hilligen and Neumann, , Gesellschaft und Staat

Drechsler, W., ‘Governance, Good Governance, and Government: The Case for Estonian Administrative Capacity’, Trames 8 (2004), 388–396Google Scholar

Drechsler, W.,‘New Public Management’, in Drechsler, Hilligen and Neumann, , Gesellschaft und Staat

Dworkin, R., Sovereign Virtue, Cambridge, MA: Harvard University Press, 2000Google Scholar

Dyson, A., and Harris, J. (eds.), Ethics and Biotechnology, London: Routledge, 1994Google Scholar

Entman, R. M., ‘Framing: Toward Clarification of a Fractured Paradigm’, Journal of Communication 43 (1993), 51–58CrossRef Google Scholar

Eriksson, S., ‘Should Results from Genetic Research be Returned to Research Subjects and their Biological Relatives?’ Trames 8 (2004), 46–63Google Scholar

Erin, C., ‘Who Owns Mo?’, in Dyson, and Harris, , Ethics and Biotechnology

Etzkowitz, H., ‘The Evolution of the Entrepreneurial University’, International Journal of Technology and Globalisation 1 (2004), 64–77CrossRef Google Scholar

Faden, R. R., and Beauchamp, T. L., A History and Theory of Informed Consent, New York: Oxford University Press, 1986Google Scholar

Feinberg, J., ‘Autonomy’, in Christman, , The Inner Citadel, 29

Fletcher, A. L., ‘Field of Genes: The Politics of Science and Identity in the Estonian Genome Project’, New Genetics and Society 23 (2004), 3–14CrossRef Google Scholar PubMed

Føllesdal, A., ‘Subsidiarity’, Journal of Political Philosophy 6 (1998), 231–259CrossRef Google Scholar

Frey, R. G., ‘Privacy, Control, and Talk of Rights’, in Paul, Miller and Paul, , The Right to Privacy, 46

Fukuyama, F., Our Posthuman Future. Consequences of the Biotechnology Revolution, New York: Farrar, Straus and Giroux, 2002Google Scholar

Fukuyama, F., State Building. Governance and World Order in the Twenty-First Century, London: Profile Books, 2004Google Scholar

Fukuyama, F., and C. S. Wagner (eds.), Information and Biological Revolutions: Global Governance Challenges, Summary of a Study Group (RAND MR-1139-DARPA, 2000), http://www.rand.org/pubs/monograph_reports/MR1139/ (accessed on 4 March 2006)

Gertz, R., ‘An Analysis of the Icelandic Supreme Court Judgement on the Health Sector Database Act’, SCRIPT-ed 1:2 (2004), http://www.law.ed.ac.uk/ahrb/script-ed/issue2/iceland.asp (accessed on 4 January 2006)Google Scholar

Gilligan, C., In a Different Voice, Cambridge, MA: Harvard University Press, 1982Google Scholar

Gillon, R., ‘The Four Principles Revisited – A Reappraisal’, in Gillon, (ed.), Principles of Health Care Ethics, 319–333

Gillon, R., Philosophical Medical Ethics, Chichester: John Wiley & Sons, 1985Google Scholar PubMed

Gillon, R. (ed.), Principles of Health Care Ethics, Chichester: John Wiley & Sons, 1994Google Scholar

Global Forum for Health Research, ‘The 10/90 Report on Health Research 2000’, http://www.globalforumhealth.org/Site/002_What%20we%20do/005_Publications/001_10%2090%20reports.php (accessed on 25 February 2006)

Goldberg, D. T., and Solomos, J., A Companion to Racial and Ethnic Studies. Blackwell Companions in Cultural Studies, Malden, MA: Blackwell Publishers, 2002CrossRef Google Scholar

Goodman, A., Heath, D. and Lindee, S. (eds.), Genetic Nature/Culture: Anthropology and Science Beyond the Two-Culture Divide, Berkeley: University of California Press, 2003Google Scholar

Gostin, L. O., and Hodge, J. G., ‘Genetic Privacy and the Law: An End to Genetics Exceptionalism’, Jurimetrics 40 (1999), 21–58Google Scholar

Greely, H. T., ‘Breaking the Stalemate: A Prospective Regulatory Framework for Unforeseen Research Uses of Human Tissue Samples and Health Information’, Wake Forest Law Review 34 (1999), 737–766Google Scholar

Greely, H. T., ‘Human Genomics Research: New Challenges for Research Ethics’, Perspectives in Biology and Medicine 44 (2001), 221–229CrossRef Google Scholar PubMed

Greely, H. T., ‘Informed Consent and Other Ethical Issues in Human Population Genetics’, Annual Review of Genetics 35 (2001), 785–800CrossRef Google Scholar PubMed

Greely, H. T., and M. C. King, Public Letter to the Government of Iceland, http://www.mannvernd.is/english/articles/greely_&_king-e.html (accessed on 21 February 2006)

Griffin, K., ‘Economic Globalization and Institutions of Global Governance’, Development and Change 34 (2003), 789–807CrossRef Google Scholar

Guillèn, M., Lareu, M. V., Pestoni, C., Salas, A. and Carracedo, A., ‘Ethical-Legal Problems of DNA Databases in Criminal Investigations’, Journal of Medical Ethics 26 (2000), 266–271CrossRef Google Scholar

Gutteling, J. M., A. Olofsson, B. Fjaestad, M. Kohring, A. Goerke, M. W. Bauer and T. Rusanen, ‘Media Coverage 1973–1996: Trends and Dynamics’, in Bauer, and Gaskell, , Biotechnology – The Making of Global Controversy

Habermas, J., The Future of Human Nature, Cambridge: Polity Press, 2003Google Scholar

Hagen, H.-E., and Carlstedt-Duke, J., ‘Building Global Networks for Human Diseases: Genes and Populations’, Nature Medicine 10 (2004), 665–667CrossRef Google Scholar PubMed

Hallap, T., ‘Science Communication and Science Policy: Estonian Media Discourse on the Genetic Database Project’, Trames 8 (2004), 217–240Google Scholar

Halldenius, L., ‘Dissecting Discrimination’, Cambridge Quarterly of Healthcare Ethics 14 (2005), 455–463CrossRef Google Scholar PubMed

Halldenius, L., Liberty Revisited. A Historical and Systematic Account of an Egalitarian Conception of Liberty and Legitimacy, Lund: Bokbox, 2001Google Scholar

Halldenius, L., ‘Non-domination and Egalitarian Welfare Politics’, Ethical Theory and Moral Practice. An International Forum 1 (1998), 335–353CrossRef Google Scholar

Halldenius, L., ‘Solidaritet eller icke-dominans? Frågor om välfärdsstatens politiska legitimitet’, Tidskrift för politisk filosofi 4 (2000), 31–42Google Scholar

Halliday, S., and Steinberg, D. L., ‘The Regulated Gene: New Legal Dilemmas’, Medical Law Review 12 (2004), 2–13CrossRef Google Scholar

Hansson, S. O., ‘The Limits of Precaution’, Foundations of Science 2 (1997), 293–306CrossRef Google Scholar

Harris, J., ‘Cloning and Bioethical Thinking’, Nature 389 (1997), 433CrossRef Google Scholar PubMed

Harris, J., ‘Is Cloning an Attack on Human Dignity?’, Nature 387 (1997), 754CrossRef Google Scholar PubMed

Harris, J.,‘Pro-life is Anti-life: The Problematic Claims of Pro-life Positions in Ethics’, in Häyry, and Takala, , Scratching the Surface of Bioethics, 99–109

Harry, D., ‘The Human Genome Diversity Project: Implications for Indigenous Peoples’, Abya Yala News 8, 4 (1994), http://www.hartford-hwp.com/archives/41/024.html (accessed on 23 February 2006)Google Scholar

Harvey, M., and McMeekin, A., ‘Public–Private Collaborations and the Race to Sequence Agrobacterium Tumefaciens’, Nature Biotechnology 22 (2004), 807–810CrossRef Google Scholar PubMed

Harwood, J., Styles of Scientific Thought: The German Genetics Community 1900–1933, Chicago: University of Chicago Press, 1993Google Scholar

Häyry, M., ‘Another Look at Dignity’, Cambridge Quarterly of Healthcare Ethics 13 (2004), 7–14CrossRef Google Scholar

Häyry, M., ‘Can Arguments Address Concerns?’, Journal of Medical Ethics 31 (2005), 598–600CrossRef Google Scholar PubMed

Häyry, M.,‘Categorical Objections to Genetic Engineering – A Critique’, in Dyson, and Harris, , Ethics and Biotechnology, 202–215

Häyry, M., ‘Ethics Committees, Principles and Consequences’, Journal of Medical Ethics 24 (1998), 81–85CrossRef Google Scholar PubMed

Häyry, M., ‘European Values in Bioethics: Why, What, and How to be Used?’, Theoretical Medicine and Bioethics 24 (2003), 199–214CrossRef Google Scholar

Häyry, M., Liberal Utilitarianism and Applied Ethics, London: Routledge, 1994Google Scholar

Häyry, M., ‘Philosophical Arguments For and Against Human Reproductive Cloning’, Bioethics 17 (2003), 447–459CrossRef Google Scholar PubMed

Häyry, M., ‘Precaution and Solidarity’, Cambridge Quarterly of Healthcare Ethics 14 (2005), 199–206CrossRef Google Scholar PubMed

Häyry, M., ‘The Tension Between Self Governance and Absolute Inner Worth in Kant's Moral Philosophy’, Journal of Medical Ethics 31 (2005), 645–647CrossRef Google Scholar PubMed

Häyry, M., and Takala, T., ‘Genetic Information, Rights, and Autonomy’, Theoretical Medicine and Bioethics 22 (2001), 403–414CrossRef Google Scholar PubMed

Häyry, M., and Takala, T. (eds.), Scratching the Surface of Bioethics, Amsterdam: Rodopi, 2003Google Scholar

Helgason, H. H., ‘Informed Consent for Donating Biosamples in Medical Research – Legal Requirements in Iceland’, in Árnason, Nordal and Árnason, , Blood and Data, 127–134

Hellman, D., ‘What Makes Genetic Discrimination Exceptional?’, American Journal of Law and Medicine 29 (2003), 77–116Google Scholar PubMed

Herissone-Kelly, P., ‘The Principlist Approach to Bioethics, and its Stormy Journey Overseas’, in Häyry, and Takala, , Scratching the Surface of Bioethics, 65–77

Herrera, S., ‘Industrial Biotechnology – A Chance at Redemption’, Nature Biotechnology 22 (2004), 671–675CrossRef Google Scholar PubMed

Hertweck, M., Göbeland, C. and Baumeister, R., ‘C. Elegans SGK-1 is the Critical Component in the Akt/PKB Kinase Complex to Control Stress Response and Life Span’, Developmental Cell 6 (2004), 577–588CrossRef Google Scholar PubMed

Hill, T., ‘The Kantian Conception of Autonomy’, in Christman, , The Inner Citadel, 91–105

Hirtzlin, I., Dubreuil, C., Préaubert, N., Duchier, J., Jansen, B., Simon, J., Faria, P. Lobato, Perez-Lezaun, A., Visser, B., Williams, G. D. and Cambon-Thomsen, A., ‘An Empirical Survey on Biobanking of Human Genetic Material and Data in Six EU Countries’, European Journal of Human Genetics 11 (2003), 475–488CrossRef Google Scholar PubMed

Hittinger, R., The First Grace: Rediscovery of the Natural Law in a Post-Christian World, Wilmington, DE: ISI Books, 2003Google Scholar

Hoeyer, K., ‘ “Science is Really Needed – That's All I Know”: Informed Consent and the Non-Verbal Practices of Collecting Blood for Genetic Research in Northern Sweden’, New Genetics and Society 22 (2003), 229–244CrossRef Google Scholar PubMed

Hoeyer, K., Mjörndal, T., Olofsson, B.-O. and Lynöe, N., ‘Informed Consent and Biobanks: A Population-Based Study of Attitudes Towards Tissue Donation for Genetic Research’, Scandinavian Journal of Public Health 32 (2004), 224–229CrossRef Google Scholar PubMed

Holm, S., ‘Not Just Autonomy – The Principles of American Biomedical Ethics’, Journal of Medical Ethics 21 (1995), 332–338CrossRef Google Scholar PubMed

Holm, S. ‘ “Parity of Reasoning Arguments in Bioethics” – Some Methodological Considerations’, in Häyry, and Takala, , Scratching the Surface of Bioethics, 47–56

Holmberg, S., and L. Weibull, ‘Vetenskapen står stark i folkopinionen’, in Holmberg, and Weibull, , Ju mer vi är tillsammans, 93–102

Holmberg, S., and Weibull, L. (eds.), Ju mer vi är tillsammans, Göteborg: SOM-Instutet, 2004Google Scholar

Holton, R., ‘Deciding to Trust, Coming to Believe’, Australasian Journal of Philosophy 72 (1994), 63–76CrossRef Google Scholar

Horton, R., ‘The Dawn of McScience’, New York Review of Books 51 (2004), 11 MarchGoogle Scholar

Hubbard, R., and Wald, E., Exploding the Gene Myth, Boston, MA: Beacon Press, 1997Google Scholar

HUGO Ethics Committee, ‘Genetic Benefit-Sharing’, Science 290 (2000), 5489

HUGO Ethics Committee,Statement on Benefit-Sharing, London: Human Genome Organization, 2000, http://www.gene.ucl.ac.uk/hugo/benefit.html (accessed on 24 February 2006)

HUGO Ethics Committee,‘Statement on Human Genomic Databases’, 2002, http://www.hugo-international.org/Statement_on_Human_Genomic_Databases.htm (accessed on 4 January 2006)

Human Genetics Commission, Inside Information: Balancing Interests in the Use of Personal Genetic Data (May 2002)

Human Genetics Commission,Public Attitudes to Human Genetic Information – People's Panel Quantitative Study Conducted for the Human Genetics Commission (March 2001)

Husebekk, A., Iversen, O.-J., Langmark, F., Laerum, O. D., Ottersen, O. P. and Stoltenberg, C., Biobanks for Health – Report and Recommendations from an EU Workshop, Oslo: Technical Report to EU Commission, 2003Google Scholar

International HapMap Consortium, ‘Integrating Ethics and Science in the International HapMap Project’, Nature Reviews Genetics 5 (2004), 467–475CrossRef

Jonas, H., Das Prinzip Verantwortung: Versus einer Ethik für die technologische Zivilisation, 7th edn, Frankfurt am Main: Insel, 1987Google Scholar

Judson, H. F., ‘A History of the Science and Technology Behind Gene Mapping and Sequencing’, in Kevles, and Hood, , The Code of Codes, 37–42

Juth, N., ‘Insurance Companies’ Access to Genetic Information: Why Regulation Alone is Not Enough', Monash Bioethics Review 22 (2003), 25–39CrossRef Google Scholar PubMed

Juth, N., Radetzki, M. and Radetzki, M., Att nyttja genetisk information. Hur mycket ska försäkringsbolagen få veta?, Stockholm: SNS Förlag, 2002Google Scholar

Kahn, A., ‘Cloning, Dignity and Ethical Revisionism’, Nature 388 (1997), 320CrossRef Google Scholar PubMed

Kaiser, J., ‘African-American Population Biobank Proposed’, Science 300 (2003), 1485CrossRef Google Scholar PubMed

Kaiser, M., ‘ “The Precautionary Principle and its Implications for Science” – Introduction’, Foundations of Science 2 (1997), 201–205CrossRef Google Scholar

Kant, I., Ethical Philosophy, 2nd edn, translated by J. W. Ellington and with an introduction by W. A. Wick, Indianapolis: Hackett Publishing Company, 1994Google Scholar

Kant, I., Foundations of the Metaphysics of Morals, translated by L. W. Beck, New York: Macmillan, 1959 [1875]Google Scholar

Kass, L. R., Life, Liberty and the Defense of Dignity. The Challenge for Bioethics, San Francisco: Encounter Books, 2002Google Scholar

Kattel, R., and Anton, R., ‘Estonian Genome Foundation and Economic Development’, Trames 8 (2004), 106–128Google Scholar

Kaveny, C. M., ‘Jurisprudence and Genetics’, Theological Studies 60 (1999), 135–148CrossRef Google Scholar PubMed

Kaye, J., ‘Genetic Research on the UK Population – Do New Principles Need to be Developed?’, Trends in Molecular Medicine 7 (2001), 528–530CrossRef Google Scholar PubMed

Kaye, J., Helgason, H. H., Nõmper, A., Sild, T. and Wendel, L., ‘Population Genetic Databases: A Comparative Analysis of the Law in Iceland, Sweden, Estonia and the UK’, Trames 8 (2004), 15–33Google Scholar

Keller, E. F., Making Sense of Life. Explaining Biological Development with Models, Metaphors, and Machines, Cambridge, MA: Harvard University Press, 2003Google Scholar

Kevles, D. J., and Hood, L. (eds.), The Code of Codes: Scientific and Social Issues in the Human Genome Project, Cambridge, MA: Harvard University Press, 1992, 37–42Google Scholar

King, M.-C., and Motulsky, A. G., ‘Mapping Human History’, Science 298 (2002), 2342–2343CrossRef Google Scholar PubMed

Knoppers, B. M., ‘Human Genetic Material: Commodity of a Gift?’, in Weir, , Stored Tissue Samples, 226–235

Knoppers, B. M. (ed.), Populations and Genetics. Legal and Socio-Ethical Perspectives, Leiden: Martinus Nijhoff, 2003Google Scholar

Knoppers, B. M., and Fecteau, C., ‘Human Genomic Databases: A Global Public Good?’, European Journal of Health Law 10 (2003), 27–41CrossRef Google Scholar PubMed

Knoppers, B. M., Laberge, C. and Hirtle, M. (eds.), Human DNA: Law and Policy. International and Comparative Perspectives, The Hague: Kluwer, 1997Google Scholar

König, K., ‘Good Governance – As Steering and Value Concept for the Modern Administrative State’, in Corkery, , Governance: Concepts and Applications, 67–93

Korts, K., ‘Becoming Masters of Our Genes: Public Acceptance of the Estonian Genome Project’, in Árnason, Nordal and Árnason, , Blood and Data, 187–192

Korts, K., ‘Introducing Gene Technology to the Society: Social Implications of the Estonian Genome Project’, Trames 8 (2004), 241–253Google Scholar

Korts, K., Weldon, S. and Gudmundsdóttir, M. L., ‘Genetic Databases and Public Attitudes: A Comparison of Iceland, Estonia and the UK’, Trames 8 (2004), 131–149Google Scholar

Kristinsson, S., ‘Databases and Informed Consent: Can Broad Consent Legitimate Research?’, in Árnason, Nordal and Árnason, , Blood and Data, 111–119

Kruuv, K., ‘Kas hakata geenidoonoriks?’, Postimees, 23 October 2002Google Scholar

Kupfer, J., Autonomy and Social Interaction, Albany: State University of New York Press, 1990Google Scholar

Kymlicka, W., Contemporary Political Philosophy, Oxford: Oxford University Press, 1990Google Scholar

Labib, K., ‘Don't Leave Dignity Out of the Cloning Debate’, Nature 388 (1997), 15CrossRef Google Scholar PubMed

Lacey, N., ‘Interpreting Doctrines of Privacy: A Comment on Anita Allen’, in Rössler, , Privacies, 40–51

Lagerspetz, O., Trust: The Tacit Demand, Dordrecht: Kluwer Academic Publishers, 1998CrossRef Google Scholar

Laurie, G., Genetic Privacy: A Challenge to Medico-legal Norms, Cambridge: Cambridge University Press, 2002CrossRef Google Scholar

Legault, M., and Munro, M., ‘Gene Hunters Extraordinaire’, National Post, 16 March 2000Google Scholar

Levitt, M., and S. Weldon, ‘Genetic Databases and Public Trust’, in Árnason, Nordal and Árnason, , Blood and Data, 175–179

Lindner, M., ‘Im Supermarkt der Biotechnik. Eine Reportage’, Gegenworte. Hefte für den Disput über Wissen 13 (2004), 30–35Google Scholar

Locke, J., Two Treatises of Government, Cambridge: Cambridge University Press, 1996 [1690]Google Scholar

Lõhmus, A., ‘EGeenist saab USA tütarfirma’, Postimees, 7 February 2002Google Scholar

Mackenzie, C., and Stoljar, N. (eds.), Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self, New York: Oxford University Press, 2000Google Scholar

Macklin, R., Double Standards in Medical Research in Developing Countries, Cambridge: Cambridge University Press, 2004CrossRef Google Scholar

Maclean, A. R., ‘Now You See It, Now You Don't: Consent and the Legal Protection of Autonomy’, Journal of Applied Philosophy 17 (2000), 277–288CrossRef Google Scholar PubMed

Mansfield, H. C. Jr, Taming the Prince. The Ambivalence of Modern Executive Power, Baltimore: Johns Hopkins University Press, 1993Google Scholar

Mansur, L., ‘Gene Discovery, Ownership and Access for Developing Countries in the Era of Molecular Genetics’, Electronic Journal of Biotechnology 5, 1 (15 April 2002), http://www.ejbiotechnology.info/content/vol5/issue1/issues/05/ (accessed on 24 February 2006)CrossRef Google Scholar

Martin, P., ‘Genetic Governance: The Risks, Oversight and Regulation of Genetic Databases in the UK’, New Genetics and Society 20 (2001), 157–183CrossRef Google Scholar

Maugh, T., ‘Drug for Only Blacks Stirs Hope, Concern’, Los Angeles Times, 9 November 2004Google Scholar

Mayhew, L. H., The New Public: Professional Communication and the Means of Social Influence, Cambridge: Cambridge University Press, 1997CrossRef Google Scholar

McEwen, J. E., ‘DNA Data Banks’, in Rothstein, , Genetic Secrets

Melton III, L. J., ‘The Threat to Medical Records Research’, New England Journal of Medicine 337 (1997), 1466–1469CrossRef Google Scholar

Merz, J. F., McGee, G. E. and Sanker, P., ‘ “Iceland Inc.”? On the Ethics of Commercial Population Genomics’, Social Science and Medicine 58 (2004), 1201–1209CrossRef Google Scholar PubMed

Mill, J. S., On Liberty, London: Penguin Books, 1985 [1859]Google Scholar

Mill, J. S., On Liberty and The Subjection of Women, Ware, Hertfordshire: Wordsworth, 1996 [1859/1869]Google Scholar

Mintzberg, H., ‘Managing Government – Governing Management’, Harvard Business Review 74 (1996), 75–83Google Scholar

Morgunbladid, ‘Meirihluti landsmanna fylgjandi gagnagrunnsfrumvarpinu’ [‘Majority of population supports database bill’], 18 November 1998

Morgunbladid, ‘Rúmt 81% fylgjandi gagnagrunn á heilbrigdissvidi’ [‘Over 81% support the Health Sector Database’], 27 April 2000

Morris, A., and O'Donnell, T. (eds.), Feminist Perspectives on Employment Law, London: Cavendish Publishing, 1999Google Scholar

Murray, T., ‘Genetic Exceptionalism and “Future Diaries”: Is Genetic Information Different from Other Medical Information?’, in Rothstein, , Genetic Secrets, 61

Narveson, J., Moral Matters, Peterborough, Ont.: Broadview Press, 1993Google Scholar

National Bioethics Advisory Commission (NBAC), Research Involving Human Biological Materials: Ethical Issues and Policy Guidance, 2 vols., Rockville, MD: NBAC, 2000

Nelkin, D., ‘Molecular Metaphors: The Gene in Popular Discourse’, Nature Reviews Genetics 2 (2001), 555–559CrossRef Google Scholar PubMed

Nilsson, A., and Rose, J., ‘Sweden Takes Steps to Protect Tissue Banks’, Science 286 (1999), 894CrossRef Google Scholar PubMed

Nissenbaum, H., ‘Protecting Privacy in an Information Age: The Problem of Privacy in Public’, Law and Philosophy 17 (1998), 559–596Google Scholar

Nõmper, A., ‘What is Wrong with Using Anonymized Data and Tissue for Research Purposes?’, in Árnason, Nordal and Árnason, , Blood and Data, 121–126

Nõmper, A., and K. Kruuv, ‘The Estonian Gene Project’, in Sándor, , Society and Genetic Information, 216

Nozick, R., Anarchy, State, and Utopia, New York: Basic Books, 1974Google Scholar

Nuffield Council on Bioethics, ‘The Ethics of Research Related to Health Care in Developing Countries’, 24 April 2002, http://www.nuffieldbioethics.org/go/ourwork/developingcountries/publication_309.html (accessed on 25 February 2006)

Nuffield Council on Bioethics,‘Pharmacogenetics, Ethical Issues’, 20 September 2003, http://www.nuffieldbioethics.org/go/ourwork/pharmacogenetics/publication_314.html (accessed on 23 February 2006)

O'Neill, O., Autonomy and Trust in Bioethics, Cambridge: Cambridge University Press, 2002CrossRef Google Scholar

O'Neill, O., ‘Informed Consent and Genetic Information’, Studies in History and Philosophy of Biological and Biomedical Sciences 32 (2001), 689–704CrossRef Google Scholar

Ostergard, R. L. Jr, Tubin, M. and Altman, J., ‘Stealing from the Past: Globalization, Strategic Formation and the Use of Indigenous Intellectual Property in the Biotechnology Industry’, Third World Quarterly 22 (2001), 643–656CrossRef Google Scholar

Pálsson, G., and Hardardóttir, K. E., ‘For Whom the Cell Tolls: Debates About Biomedicine’, Current Anthropology 43 (2002), 271–301CrossRef Google Scholar

Paul, E. F., Miller, F. D. and Paul, J. (eds.), The Right to Privacy, Cambridge: Cambridge University Press, 2000Google Scholar

Pellegrino, E. D., and Thomasma, D. C., The Virtues in Medical Practice, New York: Oxford University Press, 1993Google Scholar

People Science and Policy Ltd, Biobank UK. A Question of Trust: A Consultation Exploring and Addressing Questions of Public Trust, London: Wellcome Trust and Medical Research Council, 2002

Peters, B. G., and Pierre, J., ‘Governance Without Government? Rethinking Public Administration’, Journal of Public Administration Research and Theory 8 (1998), 223–244CrossRef Google Scholar

Petersen, A., ‘Biofantasies: Genetics and Medicine in the Print News Media’, Social Science and Medicine 52 (2001), 1255–1268CrossRef Google Scholar PubMed

Pettit, P., Republicanism. A Theory of Freedom and Government, Oxford: Clarendon Press, 1997Google Scholar

Philippine Solidarity Group Toronto, ‘PSG Supports Indigenous Peoples’, NativeNet (1993), http://www.native-net.org/archive/nl/9312/0089.html (accessed on 24 February 2006)

Purdue, D., ‘Experiments in the Governance of Biotechnology: A Case Study of the UK National Consensus Conference’, New Genetics and Society 18 (1999), 79–99CrossRef Google Scholar

Rawls, J., A Theory of Justice, Oxford: Oxford University Press, 1972Google Scholar

Rendtorff, J. D., and Kemp, P. (eds.), Basic Ethical Principles in European Bioethics and Biolaw, 2 vols., Copenhagen and Barcelona: Centre for Ethics and Law and Institut Borja de Bioètica, 2000Google Scholar

Rhodes, R., ‘Genetic Links, Family Ties and Social Bonds: Rights and Responsibilities in the Face of Genetic Knowledge’, Journal of Medicine and Philosophy 23 (1998), 10–30CrossRef Google Scholar PubMed

Rhodes, R., Battin, M. Pabst and Silvers, A. (eds.), Medicine and Social Justice: Essays on the Distribution of Health Care, New York: Oxford University Press, 2002Google Scholar

Rhodes, R. A. W., ‘The New Governance: Governing Without Government’, Political Studies 64 (1996), 652–667CrossRef Google Scholar

Robinson, M., Communication and Health in a Multi-Ethnic Society, Bristol: Policy Press, 2002CrossRef Google Scholar

Rose, H., The Commodification of Bioinformation: The Icelandic Health Sector Database, London: Wellcome Trust, 2001Google Scholar

Rose, H.,‘The Commodification of Virtual Reality: The Icelandic Health Sector Database’, in Goodman, Heath and Lindee, , Genetic Nature/Culture, 80

Rose, H., ‘An Ethical Dilemma. The Rise and Fall of UmanGenomics – The Model Biotech Company?’, Nature 425 (2003), 123–124CrossRef Google Scholar

Rose, H.,‘Risk, Trust and Scepticism in the Age of the New Genetics’, in Adam, Beck and Loon, , The Risk Society and Beyond, 63–77

Rosenberg, N. A., Pritchard, J. K., Weber, J. L., Cann, H. M., Kidd, K. K., Zhivotovsky, L. A. and Feldman, M. W., ‘Genetic Structure of Human Populations’, Science 298 (2002), 2381–2385CrossRef Google Scholar PubMed

Rössler, B., The Value of Privacy, Cambridge: Polity Press, 2005Google Scholar

Rössler, B. (ed.), Privacies. Philosophical Evaluations, Stanford: Stanford University Press, 2004Google Scholar

Rothstein, M. A. (ed.), Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era, New Haven: Yale University Press, 1997Google Scholar

Sade, R. M., ‘Medicine and Managed Care, Morals and Markets’, in Bondeson, and Jones, , The Ethics of Managed Care, 55–74

Salter, B., and Jones, M., ‘Regulating Human Genetics: The Changing Politic of Biotechnology Governance in the European Union’, Health, Risk and Society 4 (2002), 325–339CrossRef Google Scholar

Sándor, J. (ed.), Society and Genetic Information: Codes and Laws in the Genetic Era, Budapest: CPS and CEU Press, 2003Google Scholar

Sarkar, S., Genetics and Reductionism, Cambridge: Cambridge University Press, 1998CrossRef Google Scholar

Schick, A., ‘The Performing State: Reflection on an Idea Whose Time Has Come but Whose Implementation Has Not’, OECD Journal on Budgeting 3 (2003), 71–103CrossRef Google Scholar

Schrecker, T., ‘Benefit-Sharing in the New Genomic Marketplace’, in Knoppers, , Populations and Genetics, 405–422

Schumpeter, J. A., Business Cycles. A Theoretical, Historical and Statistical Analysis of the Capitalist Process, Philadelphia: Porcupine Press, 1939Google Scholar

Schumpeter, J. A., ‘The Economy as a Whole. Seventh Chapter of The Theory of Economic Development’, Industry and Innovation 1/2 (2002), 93–145Google Scholar

Shapin, S., A Social History of Truth. Civility and Science in Seventeenth-Century England, Chicago: University of Chicago Press, 1994Google Scholar

Shapiro, D., ‘Cloning, Dignity and Ethical Reasoning’, Nature 388 (1997), 511CrossRef Google Scholar PubMed

Sharp, R. R., and Foster, M. W., ‘Involving Study Populations in the Review of Genetic Research’, Journal of Law, Medicine and Ethics 28 (2000), 41–51CrossRef Google Scholar PubMed

Shildrick, M., Leaky Bodies and Boundaries. Feminism, Postmodernism and (Bio)ethics, London: Routledge, 1997Google Scholar

Simm, K., ‘Benefit-Sharing: An Inquiry Regarding the Meaning and Limits of the Concept in Human Genetic Research’, Genomics, Society and Policy 1, 2 (2005), 29–40CrossRef Google Scholar

Singer, P., Practical Ethics, Cambridge: Cambridge University Press, 1979Google Scholar

Skinner, Q., ‘A Third Concept of Liberty’, Proceedings of the British Academy 117 (2003), 237–268Google Scholar

Solomon, R. C., and Flores, F., Building Trust in Business, Politics, Relationships, and Life, Oxford: Oxford University Press, 2001Google Scholar

Sorenson, J., ‘What We Still Don't Know about Genetic Screening and Counselling’, in Annas, and Elias, , Gene Mapping, 208

Suleiman, E., Dismantling Democratic States, Princeton: Princeton University Press, 2003Google Scholar

Sutrop, M., and Simm, K., ‘The Estonian Health Care System and the Genetic Database Project: From Limited Resources to Big Hopes’, Cambridge Quarterly of Healthcare Ethics 13 (2004), 254–262CrossRef Google Scholar PubMed

Takala, T., ‘The (Im)morality of (Un)naturalness’, Cambridge Quarterly of Healthcare Ethics 13 (2004), 15–19CrossRef Google Scholar PubMed

Takala, T., ‘What is Wrong with Global Bioethics? On the Limitations of the Four Principles Approach’, Cambridge Quarterly of Healthcare Ethics 10 (2001), 72–77CrossRef Google Scholar PubMed

Takala, T., and Häyry, M., ‘Genetic Ignorance, Moral Obligations and Social Duties’, Journal of Medicine and Philosophy 25 (2000), 107–113CrossRef Google Scholar PubMed

Tammpuu, P., ‘Constructing Public Images of New Genetics and Gene Technology: The Media Discourse on the Estonian Human Genome Project’, Trames 8 (2004), 192–216Google Scholar

Tavani, H. T., ‘Genomic Research and Data-Mining Technology: Implications for Personal Privacy and Informed Consent’, Ethics and Information Technology 6 (2004), 15–28CrossRef Google Scholar PubMed

Taylor, J. S. (ed.), Personal Autonomy: New Essays on Personal Autonomy and its Role in Contemporary Moral Philosophy, Cambridge: Cambridge University Press, 2005CrossRef Google Scholar

ten Have, H., and Gordijn, B. (eds.), Bioethics in a European Perspective, Dordrecht: Kluwer Academic Publishers, 2001CrossRef Google Scholar

Thomasma, D. C., Novak, D. and Weisstub, D. (eds.), The Foundations of Health Care, Dordrecht: Kluwer Academic Publishers, forthcoming

Thompson, A. K., and Chadwick, R. F. (eds.), Genetic Information: Acquisition, Access, and Control, New York: Kluwer Academic/Plenum Publishers, 1999CrossRef Google Scholar

Thomson, J. J., ‘The Right to Privacy’, Philosophy and Public Affairs 4 (1975), 295–314Google Scholar

Thorgeirsdóttir, S., ‘Genes of a Nation: The Promotion of Iceland's Genetic Information’, Trames 8 (2004), 178–191Google Scholar

Tomes, A., ‘UK Government Science Policy: The “Enterprise Deficit” Fallacy’, Technovation 23 (2003), 785–792CrossRef Google Scholar

Tonti-Filippini, N., ‘The Concept of Human Dignity in the International Human Rights Instruments’, in Correa, Dios Vial and Sgreccia, , Identity and Statute of Human Embryo, 381–404

Tutton, R., Kaye, J. and Hoyer, K., ‘Governing UK Biobank: The Importance of Ensuring Public Trust’, Trends in Biotechnology 22 (2004), 284–285CrossRef Google Scholar PubMed

Dijck, J., Imagenation: Popular Images of Genetics, New York: New York University Press, 1998CrossRef Google Scholar

Schmoller, G., Das Merkantilsystem in seiner historischen Bedeutung. Städtische, territoriale und staatliche Wirtschaftspolitik, Frankfurt am Main: Klostermann, 1944 [1884]Google Scholar

Wartburg, W. P., and Liew, J., Gene Technology and Social Acceptance, Lanham, MD: University Press of America, 1999Google Scholar

Wade, N., ‘A Shared Success, 2 Rivals’ Announcement Marks New Medical Era, Risks and All', New York Times, 27 June 2000, A1 and A21Google Scholar

Warnock, M. (ed.), Utilitarianism, On Liberty, Essay on Bentham, London: Collins, 1962Google Scholar

Warren, S. D., and Brandeis, L. D., ‘The Right to Privacy’, Harvard Law Review 4 (1890), 193–220CrossRef Google Scholar

Weir, R. F. (ed.), Stored Tissue Samples: Ethical, Legal, and Public Policy Implications, Iowa City, IA: University of Iowa Press, 1998Google Scholar

Weldon, S., and M. Levitt, ‘Public Databases and Privat(ized) Property? A UK Study of Public Perceptions of Privacy in Relation to Population Based Human Genetic Databases’, in Árnason, Nordal and Árnason, , Blood and Data, 181–186

Wexler, N., ‘Clairvoyance and Caution: Repercussions from the Human Genome Project’, in Kevles, and Hood, , The Code of Codes, 211–243

Wilson, S., ‘Population Biobanks and Social Justice: Commercial or Communitarian Models? A Comparative Analysis of Benefit Sharing, Ownership and Access Arrangements’, Trames 8 (2004), 80–90Google Scholar

Winickoff, D. E., and Winickoff, R. N., ‘The Charitable Trust as a Model for Genomic Biobanks’, New England Journal of Medicine 349 (2003), 1180–1184CrossRef Google Scholar PubMed

World Health Organization, Genetic Databases: Assessing the Benefits and the Impact on Human and Patient Rights, Geneva: WHO, 2003

World Health Organization,Genomics and World Health, Report of the Advisory Committee on Health Research, Geneva: WHO, 2001, http://whqlibdoc.who.int/hq/2002/a74580.pdf (accessed on 25 February 2006)

World Health Organization,Human Genetics Programme, ‘Proposed International Guidelines on Ethical Issues in Medical Genetics and Genetic Services’, WHO, 1998

Clayton, Wright E., Steinberg, K. K., Khoury, M. J., Thomson, E., Andrews, L., Kahn, M. J. Ellis, Kopelman, L. M. and Weiss, J. O., ‘Informed Consent for Genetic Research on Stored Tissue Samples’, Journal of the American Medical Association 274 (1995), 1786–1788CrossRef Google Scholar PubMed

deCODE Inc., website, http://www.decode.com (accessed on 11 February 2006)

Ensembl, website, http://www.ensembl.org/ (accessed on 17 February 2006)

Estonian Genome Foundation, website, http://www.genomics.ee (accessed on 4 January 2006)

Estonian Genome Project, website, http://www.geenivaramu.ee (accessed on 4 January 2006)

Public Population Project in Genomics, website, http://www.p3gconsortium.org/ (accessed on 23 February 2006)

UK Biobank, website, http://www.ukbiobank.ac.uk (accessed on 11 February 2006)

UmanGenomics, website, http://www.umangenomics.com (accessed on 4 January 2006; at the time of writing the website is under reconstruction)