Skip to main content Accessibility help
×
  • Cited by 24
Publisher:
Cambridge University Press
Online publication date:
August 2012
Print publication year:
2007
Online ISBN:
9780511611087

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.

Reviews

'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

Refine List

Actions for selected content:

Select all | Deselect all
  • View selected items
  • Export citations
  • Download PDF (zip)
  • Save to Kindle
  • Save to Dropbox
  • Save to Google Drive

Save Search

You can save your searches here and later view and run them again in "My saved searches".

Please provide a title, maximum of 40 characters.
×

Contents


Page 1 of 2



Page 1 of 2


Bibliography
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
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
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
UK
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
Official publications (including professional associations)
EC
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
Council of Europe
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)
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)
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)
UK
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
USA
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 Declarations
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
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
Books and articles
Abbott, A., ‘Sweden Sets Ethical Standards for Use of Genetic “Biobanks” ’, Nature 400 (1999), 3
Adam, B., Beck, U. and Loon, J. (eds.), The Risk Society and Beyond: Critical Issues for Social Theory, London: Sage, 2000
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), 327–337
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 July
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, 1992
Arendt, H., The Human Condition, Chicago: University of Chicago Press, 1958
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, 2004
Árnason, V., ‘Coding and Consent. Moral Challenges of the Database Project in Iceland’, Bioethics 18 (2004), 39–61
Árnason, V., ‘Sensible Discussion in Bioethics: Reflections on Interdisciplinary Research’, Cambridge Quarterly of Healthcare Ethics 14 (2005), 322–328
Árnason, V., and Árnason, G., ‘Informed Democratic Consent? The Case of the Icelandic Database’, Trames 8 (2004), 164–177
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, 2001
Ashcroft, R. E., ‘From Public Interest to Political Justice’, Cambridge Quarterly of Healthcare Ethics 13 (2004), 20–27
Austin, M. A., Harding, S. and McElroy, C., ‘Genebanks: A Comparison of Eight Proposed International Genetic Databases’, Community Genetics 6 (2003), 37–45
Austin, M. A., Harding, S. and McElroy, C., ‘Monitoring Ethical, Legal, and Social Issues in Developing Population Genetic Databases’, Genetics in Medicine 5 (2003), 451–457
Avise, J. C., The Genetic Gods: Evolution and Belief in Human Affairs, Cambridge, MA: Harvard University Press, 1998
Bahnsen, U., ‘Im Dickicht der Proteine’, Die Zeit, 13 July 2000
Baier, A., ‘Trust and Anti-Trust’, Ethics 96 (1986), 231–260
Baier, A., ‘Trusting People’, Philosophical Perspectives 6 (1992), 137–153
Barbour, R., and Kitzinger, J. (eds.), Developing Focus Group Research, London: Sage, 1999
Barker, J. H., ‘Common-pool Resources and Population Genomics in Iceland, Estonia, and Tonga’, Medicine, Health Care and Philosophy 6 (2003), 133–144
Bauer, M. W., and Gaskell, G. (eds.), Biotechnology – The Making of Global Controversy, Cambridge: Cambridge University Press, 2002
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, 2001
Begley, S., ‘Decoding the Human Body’, Newsweek, 10 April 2000, 52
Berg, K., ‘The Ethics of Benefit-sharing’, Clinical Genetics 59 (2001), 240–243
Blume, P., Protection of Informational Privacy, Copenhagen: DJØF Publishing, 2002
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, 1991
Bondeson, W. B., and Jones, J. W. (eds.), The Ethics of Managed Care: Professional Integrity and Patient Rights, Boston: Kluwer Academic Publishers, 2002
Bradley, H., Gender and Power in the Workplace. Analysing the Impact of Economic Change, Basingstoke: Macmillan, 1999
Breithaupt, H., ‘Pioneers in Medicine’, EMBO Reports 4 (2003), 1019–1021
Brownsword, R., ‘Regulating Human Genetics: New Dilemmas For a New Millennium’, Medical Law Review 12 (2004), 14–39
Brush, S. B., ‘Bioprospecting the Public Domain’, Cultural Anthropology 14 (1999), 535–555
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, 1999
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)
Casado da Rocha, A., ‘Ethical Aspects of Human Genetic Databases: Distinctions on the Nature, Provision, and Ownership of Genetic Information’, Trames 8 (2004), 34–45
Caulfield, T., ‘Regulating the Commercialization of Human Genetics: Can We Address the Big Concerns?’, in Thompson, and Chadwick, , Genetic Information
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)
Chadwick, R., Concise Encyclopedia of the Ethics of New Technologies, San Diego: Academic Press, 2001
Chadwick, R., ‘Genetics, Choice and Responsibility’, Health, Risk and Society 1 (1999), 293–300
Chadwick, R., and Berg, K., ‘Solidarity and Equity: New Ethical Framework for Genetic Databases’, Nature Review Genetics 2 (2001), 318–321
Chadwick, R., and Wilson, S., ‘Genomic Databases as Global Public Goods?’, Res Publica 10 (2004), 123–134
Christman, J. (ed.), The Inner Citadel, New York: Oxford University Press, 1989
Cohen, A., ‘Scientific Team Crosses Genetic Frontier’, Globe and Mail, 27 June 2000
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, 1999
Corkery, J. (ed.), Governance: Concepts and Applications, Brussels: International Institute of Administrative Sciences, 1999
Cowley, G., and Underwood, A., ‘A Revolution in Medicine’, Newsweek, 10 April 2000, 62
Dawson, Cragg Ross, Public Perceptions of the Collection of Human Biological Samples, London: Wellcome Trust and Medical Research Council, 2000
Daniels, N., Just Health Care, Cambridge: Cambridge University Press, 1985
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, 1998
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, 1997
Delanty, G., ‘Constructivism, Sociology and the New Genetics’, New Genetics and Society 21 (2002), 279–289
Drechsler, H., Hilligen, W. and Neumann, F. (eds.), Gesellschaft und Staat. Lexikon der Politik, 10th edn, Munich: Franz Vahlen (C. H. Beck), 2003
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), 388–396
Drechsler, W.,‘New Public Management’, in Drechsler, Hilligen and Neumann, , Gesellschaft und Staat
Dworkin, R., Sovereign Virtue, Cambridge, MA: Harvard University Press, 2000
Dyson, A., and Harris, J. (eds.), Ethics and Biotechnology, London: Routledge, 1994
Entman, R. M., ‘Framing: Toward Clarification of a Fractured Paradigm’, Journal of Communication 43 (1993), 51–58
Eriksson, S., ‘Should Results from Genetic Research be Returned to Research Subjects and their Biological Relatives?’ Trames 8 (2004), 46–63
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), 64–77
Faden, R. R., and Beauchamp, T. L., A History and Theory of Informed Consent, New York: Oxford University Press, 1986
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), 3–14
Føllesdal, A., ‘Subsidiarity’, Journal of Political Philosophy 6 (1998), 231–259
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, 2002
Fukuyama, F., State Building. Governance and World Order in the Twenty-First Century, London: Profile Books, 2004
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)
Gilligan, C., In a Different Voice, Cambridge, MA: Harvard University Press, 1982
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, 1985
Gillon, R. (ed.), Principles of Health Care Ethics, Chichester: John Wiley & Sons, 1994
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, 2002
Goodman, A., Heath, D. and Lindee, S. (eds.), Genetic Nature/Culture: Anthropology and Science Beyond the Two-Culture Divide, Berkeley: University of California Press, 2003
Gostin, L. O., and Hodge, J. G., ‘Genetic Privacy and the Law: An End to Genetics Exceptionalism’, Jurimetrics 40 (1999), 21–58
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), 737–766
Greely, H. T., ‘Human Genomics Research: New Challenges for Research Ethics’, Perspectives in Biology and Medicine 44 (2001), 221–229
Greely, H. T., ‘Informed Consent and Other Ethical Issues in Human Population Genetics’, Annual Review of Genetics 35 (2001), 785–800
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), 789–807
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), 266–271
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, 2003
Hagen, H.-E., and Carlstedt-Duke, J., ‘Building Global Networks for Human Diseases: Genes and Populations’, Nature Medicine 10 (2004), 665–667
Hallap, T., ‘Science Communication and Science Policy: Estonian Media Discourse on the Genetic Database Project’, Trames 8 (2004), 217–240
Halldenius, L., ‘Dissecting Discrimination’, Cambridge Quarterly of Healthcare Ethics 14 (2005), 455–463
Halldenius, L., Liberty Revisited. A Historical and Systematic Account of an Egalitarian Conception of Liberty and Legitimacy, Lund: Bokbox, 2001
Halldenius, L., ‘Non-domination and Egalitarian Welfare Politics’, Ethical Theory and Moral Practice. An International Forum 1 (1998), 335–353
Halldenius, L., ‘Solidaritet eller icke-dominans? Frågor om välfärdsstatens politiska legitimitet’, Tidskrift för politisk filosofi 4 (2000), 31–42
Halliday, S., and Steinberg, D. L., ‘The Regulated Gene: New Legal Dilemmas’, Medical Law Review 12 (2004), 2–13
Hansson, S. O., ‘The Limits of Precaution’, Foundations of Science 2 (1997), 293–306
Harris, J., ‘Cloning and Bioethical Thinking’, Nature 389 (1997), 433
Harris, J., ‘Is Cloning an Attack on Human Dignity?’, Nature 387 (1997), 754
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)
Harvey, M., and McMeekin, A., ‘Public–Private Collaborations and the Race to Sequence Agrobacterium Tumefaciens’, Nature Biotechnology 22 (2004), 807–810
Harwood, J., Styles of Scientific Thought: The German Genetics Community 1900–1933, Chicago: University of Chicago Press, 1993
Häyry, M., ‘Another Look at Dignity’, Cambridge Quarterly of Healthcare Ethics 13 (2004), 7–14
Häyry, M., ‘Can Arguments Address Concerns?’, Journal of Medical Ethics 31 (2005), 598–600
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), 81–85
Häyry, M., ‘European Values in Bioethics: Why, What, and How to be Used?’, Theoretical Medicine and Bioethics 24 (2003), 199–214
Häyry, M., Liberal Utilitarianism and Applied Ethics, London: Routledge, 1994
Häyry, M., ‘Philosophical Arguments For and Against Human Reproductive Cloning’, Bioethics 17 (2003), 447–459
Häyry, M., ‘Precaution and Solidarity’, Cambridge Quarterly of Healthcare Ethics 14 (2005), 199–206
Häyry, M., ‘The Tension Between Self Governance and Absolute Inner Worth in Kant's Moral Philosophy’, Journal of Medical Ethics 31 (2005), 645–647
Häyry, M., and Takala, T., ‘Genetic Information, Rights, and Autonomy’, Theoretical Medicine and Bioethics 22 (2001), 403–414
Häyry, M., and Takala, T. (eds.), Scratching the Surface of Bioethics, Amsterdam: Rodopi, 2003
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), 77–116
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), 671–675
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), 577–588
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), 475–488
Hittinger, R., The First Grace: Rediscovery of the Natural Law in a Post-Christian World, Wilmington, DE: ISI Books, 2003
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), 229–244
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), 224–229
Holm, S., ‘Not Just Autonomy – The Principles of American Biomedical Ethics’, Journal of Medical Ethics 21 (1995), 332–338
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, 2004
Holton, R., ‘Deciding to Trust, Coming to Believe’, Australasian Journal of Philosophy 72 (1994), 63–76
Horton, R., ‘The Dawn of McScience’, New York Review of Books 51 (2004), 11 March
Hubbard, R., and Wald, E., Exploding the Gene Myth, Boston, MA: Beacon Press, 1997
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, 2003
International HapMap Consortium, ‘Integrating Ethics and Science in the International HapMap Project’, Nature Reviews Genetics 5 (2004), 467–475
Jonas, H., Das Prinzip Verantwortung: Versus einer Ethik für die technologische Zivilisation, 7th edn, Frankfurt am Main: Insel, 1987
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), 25–39
Juth, N., Radetzki, M. and Radetzki, M., Att nyttja genetisk information. Hur mycket ska försäkringsbolagen få veta?, Stockholm: SNS Förlag, 2002
Kahn, A., ‘Cloning, Dignity and Ethical Revisionism’, Nature 388 (1997), 320
Kaiser, J., ‘African-American Population Biobank Proposed’, Science 300 (2003), 1485
Kaiser, M., ‘ “The Precautionary Principle and its Implications for Science” – Introduction’, Foundations of Science 2 (1997), 201–205
Kant, I., Ethical Philosophy, 2nd edn, translated by J. W. Ellington and with an introduction by W. A. Wick, Indianapolis: Hackett Publishing Company, 1994
Kant, I., Foundations of the Metaphysics of Morals, translated by L. W. Beck, New York: Macmillan, 1959 [1875]
Kass, L. R., Life, Liberty and the Defense of Dignity. The Challenge for Bioethics, San Francisco: Encounter Books, 2002
Kattel, R., and Anton, R., ‘Estonian Genome Foundation and Economic Development’, Trames 8 (2004), 106–128
Kaveny, C. M., ‘Jurisprudence and Genetics’, Theological Studies 60 (1999), 135–148
Kaye, J., ‘Genetic Research on the UK Population – Do New Principles Need to be Developed?’, Trends in Molecular Medicine 7 (2001), 528–530
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), 15–33
Keller, E. F., Making Sense of Life. Explaining Biological Development with Models, Metaphors, and Machines, Cambridge, MA: Harvard University Press, 2003
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, 37–42
King, M.-C., and Motulsky, A. G., ‘Mapping Human History’, Science 298 (2002), 2342–2343
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, 2003
Knoppers, B. M., and Fecteau, C., ‘Human Genomic Databases: A Global Public Good?’, European Journal of Health Law 10 (2003), 27–41
Knoppers, B. M., Laberge, C. and Hirtle, M. (eds.), Human DNA: Law and Policy. International and Comparative Perspectives, The Hague: Kluwer, 1997
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), 241–253
Korts, K., Weldon, S. and Gudmundsdóttir, M. L., ‘Genetic Databases and Public Attitudes: A Comparison of Iceland, Estonia and the UK’, Trames 8 (2004), 131–149
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 2002
Kupfer, J., Autonomy and Social Interaction, Albany: State University of New York Press, 1990
Kymlicka, W., Contemporary Political Philosophy, Oxford: Oxford University Press, 1990
Labib, K., ‘Don't Leave Dignity Out of the Cloning Debate’, Nature 388 (1997), 15
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, 1998
Laurie, G., Genetic Privacy: A Challenge to Medico-legal Norms, Cambridge: Cambridge University Press, 2002
Legault, M., and Munro, M., ‘Gene Hunters Extraordinaire’, National Post, 16 March 2000
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), 30–35
Locke, J., Two Treatises of Government, Cambridge: Cambridge University Press, 1996 [1690]
Lõhmus, A., ‘EGeenist saab USA tütarfirma’, Postimees, 7 February 2002
Mackenzie, C., and Stoljar, N. (eds.), Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self, New York: Oxford University Press, 2000
Macklin, R., Double Standards in Medical Research in Developing Countries, Cambridge: Cambridge University Press, 2004
Maclean, A. R., ‘Now You See It, Now You Don't: Consent and the Legal Protection of Autonomy’, Journal of Applied Philosophy 17 (2000), 277–288
Mansfield, H. C. Jr, Taming the Prince. The Ambivalence of Modern Executive Power, Baltimore: Johns Hopkins University Press, 1993
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)
Martin, P., ‘Genetic Governance: The Risks, Oversight and Regulation of Genetic Databases in the UK’, New Genetics and Society 20 (2001), 157–183
Maugh, T., ‘Drug for Only Blacks Stirs Hope, Concern’, Los Angeles Times, 9 November 2004
Mayhew, L. H., The New Public: Professional Communication and the Means of Social Influence, Cambridge: Cambridge University Press, 1997
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), 1466–1469
Merz, J. F., McGee, G. E. and Sanker, P., ‘ “Iceland Inc.”? On the Ethics of Commercial Population Genomics’, Social Science and Medicine 58 (2004), 1201–1209
Mill, J. S., On Liberty, London: Penguin Books, 1985 [1859]
Mill, J. S., On Liberty and The Subjection of Women, Ware, Hertfordshire: Wordsworth, 1996 [1859/1869]
Mintzberg, H., ‘Managing Government – Governing Management’, Harvard Business Review 74 (1996), 75–83
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, 1999
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, 1993
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), 555–559
Nilsson, A., and Rose, J., ‘Sweden Takes Steps to Protect Tissue Banks’, Science 286 (1999), 894
Nissenbaum, H., ‘Protecting Privacy in an Information Age: The Problem of Privacy in Public’, Law and Philosophy 17 (1998), 559–596
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, 1974
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, 2002
O'Neill, O., ‘Informed Consent and Genetic Information’, Studies in History and Philosophy of Biological and Biomedical Sciences 32 (2001), 689–704
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), 643–656
Pálsson, G., and Hardardóttir, K. E., ‘For Whom the Cell Tolls: Debates About Biomedicine’, Current Anthropology 43 (2002), 271–301
Paul, E. F., Miller, F. D. and Paul, J. (eds.), The Right to Privacy, Cambridge: Cambridge University Press, 2000
Pellegrino, E. D., and Thomasma, D. C., The Virtues in Medical Practice, New York: Oxford University Press, 1993
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), 223–244
Petersen, A., ‘Biofantasies: Genetics and Medicine in the Print News Media’, Social Science and Medicine 52 (2001), 1255–1268
Pettit, P., Republicanism. A Theory of Freedom and Government, Oxford: Clarendon Press, 1997
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), 79–99
Rawls, J., A Theory of Justice, Oxford: Oxford University Press, 1972
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, 2000
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), 10–30
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, 2002
Rhodes, R. A. W., ‘The New Governance: Governing Without Government’, Political Studies 64 (1996), 652–667
Robinson, M., Communication and Health in a Multi-Ethnic Society, Bristol: Policy Press, 2002
Rose, H., The Commodification of Bioinformation: The Icelandic Health Sector Database, London: Wellcome Trust, 2001
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), 123–124
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), 2381–2385
Rössler, B., The Value of Privacy, Cambridge: Polity Press, 2005
Rössler, B. (ed.), Privacies. Philosophical Evaluations, Stanford: Stanford University Press, 2004
Rothstein, M. A. (ed.), Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era, New Haven: Yale University Press, 1997
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), 325–339
Sándor, J. (ed.), Society and Genetic Information: Codes and Laws in the Genetic Era, Budapest: CPS and CEU Press, 2003
Sarkar, S., Genetics and Reductionism, Cambridge: Cambridge University Press, 1998
Schick, A., ‘The Performing State: Reflection on an Idea Whose Time Has Come but Whose Implementation Has Not’, OECD Journal on Budgeting 3 (2003), 71–103
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, 1939
Schumpeter, J. A., ‘The Economy as a Whole. Seventh Chapter of The Theory of Economic Development’, Industry and Innovation 1/2 (2002), 93–145
Shapin, S., A Social History of Truth. Civility and Science in Seventeenth-Century England, Chicago: University of Chicago Press, 1994
Shapiro, D., ‘Cloning, Dignity and Ethical Reasoning’, Nature 388 (1997), 511
Sharp, R. R., and Foster, M. W., ‘Involving Study Populations in the Review of Genetic Research’, Journal of Law, Medicine and Ethics 28 (2000), 41–51
Shildrick, M., Leaky Bodies and Boundaries. Feminism, Postmodernism and (Bio)ethics, London: Routledge, 1997
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), 29–40
Singer, P., Practical Ethics, Cambridge: Cambridge University Press, 1979
Skinner, Q., ‘A Third Concept of Liberty’, Proceedings of the British Academy 117 (2003), 237–268
Solomon, R. C., and Flores, F., Building Trust in Business, Politics, Relationships, and Life, Oxford: Oxford University Press, 2001
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, 2003
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), 254–262
Takala, T., ‘The (Im)morality of (Un)naturalness’, Cambridge Quarterly of Healthcare Ethics 13 (2004), 15–19
Takala, T., ‘What is Wrong with Global Bioethics? On the Limitations of the Four Principles Approach’, Cambridge Quarterly of Healthcare Ethics 10 (2001), 72–77
Takala, T., and Häyry, M., ‘Genetic Ignorance, Moral Obligations and Social Duties’, Journal of Medicine and Philosophy 25 (2000), 107–113
Tammpuu, P., ‘Constructing Public Images of New Genetics and Gene Technology: The Media Discourse on the Estonian Human Genome Project’, Trames 8 (2004), 192–216
Tavani, H. T., ‘Genomic Research and Data-Mining Technology: Implications for Personal Privacy and Informed Consent’, Ethics and Information Technology 6 (2004), 15–28
Taylor, J. S. (ed.), Personal Autonomy: New Essays on Personal Autonomy and its Role in Contemporary Moral Philosophy, Cambridge: Cambridge University Press, 2005
ten Have, H., and Gordijn, B. (eds.), Bioethics in a European Perspective, Dordrecht: Kluwer Academic Publishers, 2001
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, 1999
Thomson, J. J., ‘The Right to Privacy’, Philosophy and Public Affairs 4 (1975), 295–314
Thorgeirsdóttir, S., ‘Genes of a Nation: The Promotion of Iceland's Genetic Information’, Trames 8 (2004), 178–191
Tomes, A., ‘UK Government Science Policy: The “Enterprise Deficit” Fallacy’, Technovation 23 (2003), 785–792
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), 284–285
Dijck, J., Imagenation: Popular Images of Genetics, New York: New York University Press, 1998
Schmoller, G., Das Merkantilsystem in seiner historischen Bedeutung. Städtische, territoriale und staatliche Wirtschaftspolitik, Frankfurt am Main: Klostermann, 1944 [1884]
Wartburg, W. P., and Liew, J., Gene Technology and Social Acceptance, Lanham, MD: University Press of America, 1999
Wade, N., ‘A Shared Success, 2 Rivals’ Announcement Marks New Medical Era, Risks and All', New York Times, 27 June 2000, A1 and A21
Warnock, M. (ed.), Utilitarianism, On Liberty, Essay on Bentham, London: Collins, 1962
Warren, S. D., and Brandeis, L. D., ‘The Right to Privacy’, Harvard Law Review 4 (1890), 193–220
Weir, R. F. (ed.), Stored Tissue Samples: Ethical, Legal, and Public Policy Implications, Iowa City, IA: University of Iowa Press, 1998
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), 80–90
Winickoff, D. E., and Winickoff, R. N., ‘The Charitable Trust as a Model for Genomic Biobanks’, New England Journal of Medicine 349 (2003), 1180–1184
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), 1786–1788
Websites
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)

Metrics

Altmetric attention score

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Book summary page views

Total views: 0 *
Loading metrics...

* Views captured on Cambridge Core between #date#. This data will be updated every 24 hours.

Usage data cannot currently be displayed.