Articles & Reports

Keyword: Privacy

  1. Allen, A.L.; (1987) “Taking Liberties: Privacy, Private Choice, and Social Contract Theory” in: 56 U. CIN. L. REV. 461
  2. Allen, A.L.; (1999) “Coercing Privacy” in: William and Mary Law Review, Vol. 40, 1999 pp.728-741
  3. Altman (1977) “Privacy Regulation: Culturally Universal or Culturally Specific? Journal of Social Issue 35:66-84
  4. Barron (1979) “Warren and Brandeis, ‘The Right to Privacy (1890)’: demystifying a landmark citation” 13 Suffolk UL Rev 875
  5. Beyleveld, D. and Histed, E. (1999) “Anonymisation is Not Exoneration”. Medical Law International 4:71–80
  6. Bloustein, E. (1964) “Privacy as an Aspect of Human Dignity: an answer to Dean Prosser” NYU L Rev 962
  7. Bygrave, L. (1998) ‘Data Protection Pursuant to the Right to Privacy in Human Rights Treaties’ 3 International Journal of Law and Information Technology 247–284
  8. Charlesworth, A. (2003) “Information Privacy Law in the European Union: e pluribus unum or ex uno plures?” 54 Hastings LJ 93
  9. Fried, S. (1968) ‘Privacy’ 77 The Yale Law Journal 475–493
  10. Gavison, R. (1980) ‘Privacy and the Limits of Law’ 89 The Yale Law Journal 421–471
  11. International Conference of Data Protection and Privacy Commissioners (2005) Montreux Declaration - The Protection of Personal Data and Privacy in a Globalised World: A Universal Right Respecting Diversites http://www.libertysecurity.org/article709.html
  12. Kalven, H (1966) “Privacy in Tort Law – Were Warren and Brandeis Wrong?” 31 Law and Cont Prob 326
  13. Leebron, D. (1991) “The Right to Privacy’s Place in the Intellectual History of Tort Law” 41 Case Western Reserve L Rev 769
  14. Loucaides (1990) “Personality and Privacy under the European Convention on Human Rights” British Yearbook of International Law LXI, 175-197
  15. Mindle G. (1989) “Liberalism, Privacy and Autonomy”, Journal of Politics 3, No. 51, 577-598
  16. Newell, P.B. (1998) “A Cross-Cultural Comparison of Privacy Definitions and Functions” Journal of Environmental Psychology 18: 357-371
  17. Parent, W.A. (1983) ‘A New Definition of Privacy for the Law’ 2 Law and Philosophy 305–338.
  18. Parker, R (1974) “A Definition of Privacy” 27 Rutgers L Rev 280
  19. Pedersen, D.M. (1979) “Dimensions of Privacy” Perceptual and Motor Skilss, May, 1291-97
  20. Peterman, L. (1993) “Privacy’s Background” Review of Politics Vol. 55, No. 2
  21. Philllipson, J. (2003) “Transforming a Brach of Confidence? Towards a Comon Law Right of Privacy under the Human Rights Act” 66 MLR 726
  22. Post, R.C. (1995) “The Social Foundation of Privacy” Constitutional Domains: Democracy, Community and Management 51, 86
  23. Post, R.C. (2001) “Three Concepts of Privacy” 89 Geo L. J. 2087
  24. Pound, R. (1915) ‘Interests of Personality’ 28 Harvard Law Review 343–365 and 445–457
  25. Rachaels, J. (1975) “Why Privacy is Important” 4 Phil and Pub Affairs 323
  26. Reiman, J.H (1976) ‘Privacy, Intimacy and Personhood’ (1976) 6 Philosophy & Public Affairs 1: 26–44
  27. Reiman, J.H. (1995) “Driving to the Panoptican” in 11 Santa Clara Computer and High Technology L J 27
  28. Wacks, R. (1980) “The Poverty of Privacy” 96 LQR 73
  29. Warren, S.D. and Brandeis, L.D. (1890) ‘The Right to Privacy’ 15 Harvard Law Review 5: 193–220
  30. Whitman, J.Q. (2004) “The Two Western Cultures of Privacy: Dignity vs. Liberty” Yale Law Journal Vol. 113

Keyword: Genetic Privacy

  1. Annas, G.J. and Roche, P.A. 2001. ”Protecting Genetic Privacy.” Nature Review: Genetics (2001)2: 392
  2. Annas, G.J. (1993). “Privacy Rules for DNA databanks: Protecting ‘Coded Future Diaries.’” Journal of the American Medical Association 270: 2346–50
  3. Arsenault et al (1999) “Short Report: Procedure to protect confidentiality of familial data in community genetics and genomic research” Clinical Genetics: 53; 259-264
  4. Australian Law Reform Commission (ALRC) (2003) “Essentially Yours: The Protection of Human Genetic Information in Australia” http://beta.austlii.edu.au/au/other/alrc/publications/reports/96/
  5. European Commission Article 29 Working Party (2004) Working Document on Genetic Data http://europa.eu.int/comm/justice_home/fsj/privacy/docs/wpdocs/2004/wp91_en.pdf
  6. Fuller et al (1999) “Privacy in Genetics Research” Science Vol. 285(5432), 1359-1361
  7. Genetic Interest Group (GIG) (2006) Human Rights, Privacy and Medical Research - Analysing UK Policy on Tissue and Data www.gig.org.uk/docs/hrprivacypdf190506.pdf
  8. Gertz, R. (2004) “An Analysis of the Icelandic Supreme Court Judgment on the Health Sector Database Act” 1:2 Script-ed
  9. Greely, H. (1998) “Legal, Ethical and Social Issues in Human Genome Research” Annual Review of Anthropology Vol. 27, 473-502
  10. Human Genetics Commission (HGC) (2001) Public Attitudes to the Uses of Human Genetic Information http://www.hgc.gov.uk/Client/document.asp?DocId=41&CAtegoryId=8
  11. Human Genetics Commission (HGC) (2002) Inside Information http://www.hgc.gov.uk/Client/Content.asp?ContentId=557
  12. International Bioethics Committee of UNESCO (2002) Report on Confidentiality and Genetic Data http://portal.unesco.org/shs/en/ev.php-URL_ID=2297&URL_DO=DO_TOPIC&URL_SECTION=201.html
  13. Lowrance, W. (2002) Learning from Experience: Privacy and the Secondary Use of Data in Health Research (the Nuffield Trust) http://www.nuffieldtrust.org.uk/publications/detail.asp?id=0&PRid=45
  14. Miller, H. (1998) “DNA Blueprints, Personhood and Genetic Privacy” 8 Health Matrix 179
  15. Sankar, P. (2003) “Genetic Privacy” Annu. Rev. Med. 54: 345-402
  16. Taylor, M. (2006) ‘Data Protection Law: Too Personal to Protect?’ 3:1 SCRIPT – ed http://www.law.ed.ac.uk/ahrb/script-ed/vol3-1/taylor.pdf

Keyword: Genetic Databases/Biobanks

  1. American Society of Human Genetics (ASHG) (1988) “DNA Banking and Analysis: Points to Consider” Am J Hum Genet: 42, 781-783
  2. Anderson (1998) “The DeCODE Proposal for an Icelandic Health Database” Icelandic Medical Association, 1998
  3. Arnason (2004) “Coding and Consent: Moral Challenges of the Database Project in Iceland” Bioethics 18(1):1467-851
  4. Arnason (2002) “Personal Identifiability in the Icelandic Health Sector Database” JILT vol. 2
  5. Bovenburg (2005) “Towards an international system of ethics and governance of biobanks: A ‘special status’ for genetic data?” Critical Public Health, December 2005; 15(4): 369–383
  6. Burnett (2003) “Making DNA Databases Safer” The Lancet Vol. 362, 1761-1762
  7. Cambon-Thomson, A. (2004) “The social and ethical issues of post-genomic human biobanks” Nature Reviews Genetics Vol. 5, 866
  8. Cambon-Thomson, A. (2006) “Current Trends in Ethics of Biobanking in Europe” presentation given at the RZPD Tissue Interface Symposium, Oct 10, 2006, Berlin. www.rzpd.de/public/uploads/vO3eGt_x69tzuwo5nA9KEg/4AFUpSllXo6t7eWJPCcIeA/Cambon-_Ethics_Biobanks.pdf
  9. Caulfield et al (2003) “DNA Databanks and Consent: A suggested policy option involving an authorisation model” BMC Medical Ethics; 4:1
  10. Chen et al (2005) “Research with Stored Biological Samples: What Do Research Participants Want?” Archives of Internal Medicine Vol. 165(6),28 March 2005,p 652–655
  11. European Commission (2004) Survey on opinions from National Ethics Committees or similar bodies, public debate and national legislation in relation to human biobanks - October 2004 http://ec.europa.eu/research/biosociety/bioethics/documents_en.htm
  12. European Society of Human Genetics (ESHG) (2003) “Data Storage and DNA Banking for Biomedical Research: technical, social and ethical issues. Recommendations of the European Society of Human Genetics” European Journal of Human Genetics 11 Suppl 2, S8-10
  13. Godard, B., Schmidtke, J., Cassiman, J. and Ayme, S. (2003) “Data Storage and DNA Banking for Biomedical Research: informed consent, confidentiality, quality issues, ownership, return of benefits. A professional perspective” European Journal of Human Genetics 11 Suppl 2, S88-S122
  14. Greely, H. (2000) “Iceland’s Plan for Genomics Research: Facts and Implications” Jurimetrics vol. 40 no. 2 p153
  15. Hansson (2004) “The Ethics of Biobanks” Cambridge Quarterly of Healthcare Ethics (2004); 13; 319-326
  16. International Bioethics Committee of UNESCO (1995) Bioethics and Human Population Genetics Research http://portal.unesco.org/shs/en/ev.php-URL_ID=2303&URL_DO=DO_TOPIC&URL_SECTION=201.html
  17. Johnston and Kaye (2004) “Does the UK Biobank have A Legal Obligation to Feedback Individual Findings To Participants?” Medical Law Review 12(239)
  18. Knoppers and Fecteau (2003) “Human Genomic Databases: A Global Public Good?” European Journal of Health Law 10: 27-41, 2003
  19. Laurie and Gibson (2003) “Generation Scotland: Legal & Ethical Aspects” AHRB
  20. Maschje (2005) “Navigating an Ethical Patchwork - Human Gene Banks” Nature Biotechnology Vol. 23, No 5, 539
  21. McInnis et al (1999) “The assent of a nation: genethics and Iceland” Clinical Genetics: 55: 234-239
  22. Norwegian University of Science and Technology (NTNO) (2004) Foresight Survey: Health Surveys and Biobanking - a Foresight analysis towards 2020 www.ntnu.no/medtek/dokumenter/foresight_medtek_2004.pdf
  23. People Science & Policy (2002) UK Biobank Consultation on the Ethical and Governance Framework www.ukbiobank.ac.uk/docs/people-science-policy.pdf
  24. Scott et al (2005) “Ethics in Practice: Conversations About Biobanks” Critical Public Health, Dec. 2005; 15(4): 359-368
  25. Tutton et al (2004) “Governing the UK Biobank: the importance of ensuring public trust” Trends in Biotechnology Vol. 22 No. 6
  26. UK Biobank (2006) Ethics and Governance Framework, v.2.0 www.ukbiobank.ac.uk/ethics/egf.php
  27. UK House of Parliament Science and Technology Committee (2001) Fourth Report on Human Genetic Databases: Challenges and Opportunities
  28. Williams (2005) “Bioethics and Large-Scale Biobanking: Individualistic Ethics and Collective Projects” Genomics, Society and Policy, Vol.1 No. 2, pp50-66
  29. World Health Organization (WHO) (2004) Genetic Databases - Assessing the Benefits And the Impact on Human and Patient Rights

Keyword: Genetic/Research Guidance

  1. International Society for Biological and Environmental Repositories (ISBER) (2005) Best Practices for Repositories I: Collection, Storage, and Retrieval of Human Biological Materials for Research
  2. UK Human Tissue Authority (HTA) (2006) Code of Practice – Consent – Code 1
  3. UK Medical Research Council (MRC) (2001) Human Tissue and Biological Samples for Use in Research: Operational and ethical guidelines http://www.mrc.ac.uk/pdf-tissue_guide_fin.pdf
  4. UK MRC (2005) Operational and ethical guidelines: Human Tissue and Biological Samples for Use in Research. Clarification following passage of the Human Tissue Act 2004 http://www.mrc.ac.uk/pdf-ethics_guide_human_tissue_clarification_april_2005.pdf
  5. WHO (2000) Guideline for obtaining informed consent for the procurement and use of human tissues, cells and fluids in research (SERG guidelines) http://www.who.int/reproductive-health/hrp/SERG_guidelines.en.html