Genetics, health care and public policy: An introduction to public health genetics

Genetics, Health Care and Public Policy: An Introduction to Public Health Genetics

Volumn , Issue , 2007, Pages 1-335

  Stewart, Alison ^a   Brice, Philippa ^a   Burton, Hilary ^a   Pharoah, Paul ^a   Sanderson, Simon ^a   Zimmern, Ron ^a  

^a Public Health Genetics Unit   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 84925209179     PISSN: None     EISSN: None     Source Type: Book    
DOI: 10.1017/CBO9780511618895     Document Type: Book

References (466)

1. Academy of Medical Sciences (2002). Clinical Academic Medicine in Jeopardy: Recommendations for Change. Summary available online at www.academicmedicine.ac.uk/uploads/Academic%20Medicine%20in%20Jeopardy.pdf.
2. Academy of Medical Sciences (2003). Strengthening Clinical Research. Available online at www.acmedsci.ac.uk/images/project/Report.pdf.
3. Academy of Medical Sciences (2006). Personal Data for Public Good: Using Health Information in Medical Research. Available online at www.acmedsci.ac.uk/images/project/Personal.pdf.
4. Acheson, L. S. and Wiesner, G. L. (2004a). Current and future applications of genetics in primary care medicine. Prim. Care 31, 449–60.
5. Acheson, L. S. and Wiesner, G. L. eds. (2004b). Genetics for Primary Care Clinicians. Prim. Care 31.
6. Aderem, A. (2005). Systems biology: its practice and challenges. Cell 121, 511–13.
7. Advisory Committee on Genetic Testing (1998). Genetic Testing for Late Onset Disorders. Available online at www.publications.doh.gov.uk/pub/docs/doh/lodrep.pdf.
8. Andrews, L. B. (2002). Genes and patent policy: rethinking intellectual property rights. Nat. Rev. Genet. 3, 803–8.
9. Andrews, L. B., Fullarton, J. E., Hotzman, N. A. et al.: Committee on Assessing Genetic Risks, Institute of Medicine (1994). Assessing Genetic Risks. Implications for Health and Social Policy. Washington, D.C.: National Academies Press.
10. Article 29Data Protection Working Party (2004). Working document on genetic data. 12178/03/EN WP91. Available online at www.datenschutz-berlin.de/doc/eu/gruppe29/wp91/wp91_en.pdf.
11. Association of British Insurers (1999). Genetic testing – ABI code of practice. Available online at www.abi.org.uk/Display/default.asp?Menu_ID=1140&Menu_All=1,946,1140&Child_ID=517.
12. Association of British Insurers (2005). Insurance and Genetic Tests. What you Need to Know. Available online at www.abi.org.uk/Display/File/Child/436/Genetics_guide_2005.pdf.
13. Banks, E. and Meade, T. (2002). The study of genes and environmental factors in common disease. Lancet 359, 1156–7.
14. Banks, R. E., Dunn, M. J., Hochstrasses, D. F. et al. (2000). Proteomics: new perspectives, new biomedical opportunities. Lancet 356, 1749–56.
15. Bayat, A. (2002). Bioinformatics. BMJ 324, 1018–22.
16. Bell, J. (1998). The new genetics in clinical practice. BMJ 316, 618–20.
17. Bell, J. (2004). Predicting disease using genomics. Nature 429, 453–6.
18. Beskow, L. M., Khoury, M. J., Baker, T. G. and Thrasher, J. F. (2001). The integration of genomics into public health research, policy and practice in the United States. Community Genet. 4, 2–11.
19. Bioscience Innovation and Growth Team (2003). Bioscience 2015. Available online at www.bioindustry.org/bigtreport/.
20. Bostyn, S. J. R. (2003). The prodigal son: the relationship between patent law and health care. Med. Law Rev. 11, 67–120.
21. Brandt-Rauf, P. W. and Brandt-Rauf, S. I. (2004). Genetic testing in the workplace: ethical, legal, and social implications. Annu. Rev. Public Health 25, 139–53.
22. Breslow, N. E. and Day, N. E. (1980). Statistical Methods in Cancer Research (Volume 1). The Analysis of Case–Control Studies. Lyon: International Agency for Research on Cancer (IARC), World Health Organisation.
23. Brice, P. (2004). Array of hope. Health Serv. J. 114, 24–5.
24. Brice, P. and Sanderson, S. (2006a). Genetics, health and medicine. Pharm. J. 277, 53–56.
25. Brice, P. and Sanderson, S. (2006b). Use for genetics in pharmacy. Pharm. J. 277, 109–12.
26. Brice, P. and Sanderson, S. (2006c). Pharmacogenetics: what are the ethical and economic implications? Pharm. J. 277, 113–14.
27. Bristol Royal Infirmary Inquiry (2001). Learning from Bristol. The Report of the Public Inquiry into Children's Heart Surgery at the Bristol Royal Infirmary 1984–1999. London: The Stationery Office. Available online at www.bristol-inquiry.org.uk/final_report/the_report.pdf.
28. British Medical Association (1998). Human Genetics: Choice and Responsibility. Oxford: Oxford University Press.
29. British Medical Association (1999). Confidentiality and Disclosure of Health Information. Available online at www.bma.org.uk/ap.nsf/Content/Confidentialitydisclosure.
30. British Medical Association (2005a). Confidentiality as Part of a Bigger Picture. A Discussion Paper. Available online at www.bma.org.uk/ap.nsf/Content/ConfidentialityBiggerPicture.
31. British Medical Association (2005b). Population Screening and Genetic Testing. A Briefing on Current Programmes and Technologies. Available online at www.bma.org.uk/ap.nsf/Content/Populationscreeninggenetictesting.
32. Brivanlou, A. H., Gage, F. H., Jaenisch, R., Jessell, T., Melton, D. and Rossant, J. (2003). Stem cells. Setting standards for human embryonic stem cells. Science 300, 913–16.
33. Brock, D. (2002). Human cloning and our sense of self. Science 296, 314–16.
34. Buchanan, A. E., Brock, D. W., Daniels, N. and Wikler, D. (2000). Chance to Choice: Genetics and Justice. Cambridge: Cambridge University Press.
35. Burke, W. (2002). Genetic testing. N. Engl. J. Med. 347, 1867–75.
36. Burke, W. (2003). Genomic medicine: genomics as a probe for disease biology. N. Engl. J. Med. 349, 969–74.
37. Burke, W. (2004). Genetic testing in primary care. Annu. Rev. Genomics Hum. Genet. 5, 1–14.
38. Burke, W. (2005). Contributions of public health to genetics education for health professionals. Health Educ. Behav. 32, 668–75.
39. Burke, W. and Emery, J. (2002). Genetics education for primary-care providers. Nat. Rev. Genet. 3, 561–6.
40. Burke, W. and Zimmern, R. L. (2004). Ensuring the appropriate use of genetic tests. Nat. Rev. Genet. 5, 955–8.
41. Burke, W., Khoury, M. J., Stewart, A., Zimmern, R. L.: Bellagio Group. (2006). The path from genome-based research to population health: development of an international collaborative public health genomics initiative. Genet. Med. 8, 451–8.
42. Burt, R. and Neklason, D. W. (2005). Genetic testing for inherited colon cancer. Gastroenterology 128, 1696–716.
43. Burton, H. (2003). Addressing Genetics, Delivering Health. Available online at www.phgu.org.uk/addressing_genetics.shtml.
44. Burton, H. (2005). Metabolic Pathways. Networks of Care. Cambridge: Public Health Genetics Unit. Available online at www.phgu.org.uk.
45. Burton, P., McCarthy, M. and Elliott, P. (2002). The study of genes and environmental factors in common disease. Lancet 359, 1155.
46. Burton, P. R., Tobin, M. D. and Hopper, J. L. (2005). Key concepts in genetic epidemiology. Lancet 366, 941–51.
47. Calvo, K. R., Liotta, L.A. and Petricoin, E. F. (2005). Clinical proteomics: frombiomarker discovery and cell signaling profiles to individualized personal therapy. Biosci. Rep. 25, 107–25.
48. Cambon-Thomsen, A. (2004). The social and ethical issues of post-genomic human biobanks. Nat. Rev. Genet. 5, 866–73.
49. Campbell, H. and Rudan, I. (2002). Interpretation of genetic association studies in complex disease. Pharmacogenomics J. 2, 349–60.
50. Cardon, L. R. and Abecasis, G. R. (2003). Using haplotype blocks to map human complex trait loci. Trends Genet. 19, 135–40.
51. Cavazzana-Calvo, M., Thrasher, A. and Mavilio, F. (2004). The future of gene therapy. Nature 427, 779–81.
52. Centers for Disease Control and Prevention (1997). Translating Advances in Human Genetics into Public Health Action: A Strategic Plan. Available online at www.cdc.gov/genomics/about/strategic.htm.
53. Chadwick, R., Levitt, M. and Shickle, D. (1997). The Right to Know and the Right Not to Know. Aldershot: Avebury.
54. Christianson, A. and Modell, B. (2004). Medical genetics in developing countries. Annu. Rev. Genomics Hum. Genet. 5, 219–65.
55. Chung, D. C. and Rustgi, A. K. (2003). The hereditary nonpolyposis colorectal cancer syndrome: genetics and clinical implications. Ann. Intern. Med. 138, 560–70.
56. Clarke, A., ed. (1998). The Genetic Testing of Children. Oxford: Bios Scientific Publishers.
57. Clayton, D. and McKeigue, P. M. (2001). Epidemiological methods for studying genes and environmental factors in complex diseases. Lancet 358, 1356–60.
58. Clayton, E. W. (2003). Genomic medicine: ethical, legal, and social implications of genomic medicine. N. Engl. J. Med. 349, 562–9.
59. Clinical Genetics Society (1994). The Genetic Testing of Children. Available online at www.bshg.org.uk/documents/official_docs/testchil.htm.
60. Collins, F. S. (1999). Shattuck lecture – medical and societal consequences of the human genome project. N. Engl. J. Med. 341, 28–37.
61. Collins, F. S. (2003). A vision for the future of genomics research. Nature 422, 835–47.
62. Committee for the Study of the Future of Public Health, Division of Health Care Services, Institute of Medicine (1998). The Future of Public Health. Washington, D.C.: National Academies Press.
63. Consumers’ Association and GeneWatch UK (2002). Genetic Testing in the High Street. Available online at www.genewatch.org/HumanGen/tests/Letters/GeneWatch.doc.
64. Cooke, G. S. and Hill, A. V. (2001). Genetics of susceptibility to human infectious disease. Nat. Rev. Genet. 2, 967–77.
65. Cordell, H. J. and Clayton, D. G. (2005). Genetic association studies. Lancet 366, 1121–31.
66. Cornish, W. R., Llewelyn, M. and Adcock, M. (2003). Intellectual Property Rights and Genetics. A Study into the Impact and Management of Intellectual Property Rights Within the Healthcare Sector. Available online at www.phgu.org.uk/about_phgu/intellect_prop_rights.html.
67. Costa, L. G. (2000). The emerging field of ecogenetics. Neurotoxicology 21, 85–9.
68. Council of Europe (1953). Convention for the Protection of Human Rights and Fundamental Freedoms. Available online at http://conventions.coe.int/treaty/en/Treaties/Html/005.htm.
69. Council of Europe (1997). Convention on Human Rights and Biomedicine. Available online at conventions.coe.int/treaty/en/treaties/html/164.htm.
70. Council for International Organisations of Medical Sciences (1990). The Declaration of Inuyama. Human Genome Mapping, Genetic Screening and Gene Therapy. Available online at www.cioms.ch/frame_1990_texts_of_guidelines.htm.
71. Council for International Organisations of Medical Sciences (2002). International Ethical Guidelines for Biomedical Research Involving Human Subjects. Geneva: CIOMS. Available online at www.cioms.ch/frame_guidelines_nov_2002.htm.
72. Daar, A. S., Thorsteinsdottir, H., Martin, D. K., Smith, A. C., Nast, S. and Singer, P. A. (2002). Top ten biotechnologies for improving health in developing countries. Nat. Genet. 32, 229–32.
73. Danzon, P. and Towse, A. (2002). The genomic revolution: is the real risk under-investment rather than bankrupt healthcare systems? J. Health Serv. Res. Policy 5, 253–5.
74. Darnton-Hill, I., Margetts, B. and Deckelbaum, R. (2004). Public health nutrition and genetics: implications for nutrition policy and promotion. Proc. Nutr. Soc. 63, 173–85.
75. Davey Smith, G. and Ebrahim, S. (2003). ‘Mendelian randomization’: can genetic epidemiology contribute to understanding environmental determinants of disease? Int. J. Epidemiol. 32, 1–22.
76. Davey Smith, G. D., Ebrahim, S., Lewis, S., Hansell, A. L., Palmer, L. J. and Burton, P. R. (2005). Genetic epidemiology and public health: hope, hype, and future prospects. Lancet 366, 1484–98.
77. Department of Health (1993). Population Needs and Genetic Services: An Outline Guide. London: HMSO.
78. Department of Health (2000a). The NHS Cancer Plan: A Plan for Investment, a Plan for Reform. Available online at www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidance/PublicationsPolicyAndGuidanceArticle/fs/en?CONTENT_ID=4009609&chk=n4LXTU.
79. Department of Health (2000b). Coronary Heart Disease: National Service Framework for Coronary Heart Disease – Modern Standards and Service Models. Available online at www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidance/PublicationsPolicyAndGuidanceArticle/fs/en?CONTENT_ID=4094275&chk=eTacxC.
80. Department of Health (2000c). Laboratory Services for Genetics. Report of an Expert Working Group to the NHS Executive and the Human Genetics Commission. Available online at www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidance/PublicationsPolicy AndGuidanceArticle/fs/en?CONTENT_ID=4118936&chk=2yGYxK.
81. Department of Health (2000d). Stem Cell Research. Medical Progress with Responsibility. A Report from the Chief Medical Officer's Expert Group Reviewing the Potential of Developments in Stem Cell Research and Cell Nuclear Replacement to Benefit Human Health. Available online at www.lucacoscioni.it/cms/documenti/donaldson_eng.pdf.
82. Department of Health (2001). The Expert Patient: A New Approach to Chronic Disease Management in the 21st Century. Available online at www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidance/PublicationsPolicyAndGuidanceArticle/fs/en?CONTENT_ID=4006801&chk=UQCoh9.
83. Department of Health (2002a). The NHS as an Innovative Organisation. A Framework and Guidance on the Management of Intellectual Property in the NHS. Available online at www.innovations.nhs.uk/pdfs/77169_doh_nhsnnovative_orgfinal.pdf.
84. Department of Health (2002b). Specialised Services National Definition Set: 20. Medical Genetic Services (All Ages). Available online at www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCareTopics/SpecialisedServicesDefinition/SpecialisedServicesDefinitionArticle/fs/en?CONTENT_ID=4001694&chk=LwpMsS.
85. Department of Health (2003a). Our Inheritance, Our Future: Realising the Potential of Genetics in the NHS. Available online at www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidance/PublicationPolicyAndGuidanceArticle/fs/en?CONTENT_ID= 4006538&chk=enskfb.
86. Department of Health (2003b). Confidentiality. NHS Code of Practice. Available online at www.dh.gov.uk/assetRoot/04/06/92/54/04069254.pdf.
87. Department of Health (2003c). Guidance on Commissioning Arrangements for Specialised Services. Available online at www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidance/PublicationsPolicyAndGuidanceArticle/fs/en?CONTENT_ID=4081718&chk=goY90I.
88. Department of Health (2004a). National Service Framework for Children, Young People and Maternity Services. Available online at www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCareTopics/ChildrenServices/ChildrenServicesInformation/ChildrenServicesInformationArticle/fs/en?CONTENT_ID=4089111&chk=U8Ecln.
89. Department of Health (2004b). Research for Patient Benefit Working Party – Final Report. Available online at www.dh.gov.uk/assetRoot/04/08/26/75/04082675.PDF.
90. Department of Health (2004c). The Human Tissue Act 2004. New Legislation on Human Organs and Tissue. Available online at www.dh.gov.uk/assetRoot/04/10/36/86/04103686.pdf.
91. Department of Health (2004d). Choosing Health: Making Healthy Choices Easier. Available online at www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidance/PublicationsPolicyAndGuidanceArticle/fs/en?CONTENT_ID=4094550&chk=aN5Cor.
92. Department of Health (2004e). Modernising Pathology Services. Available online at www.dh.gov.uk/assetRoot/04/07/31/12/04073112.pdf.
93. Department of Health (2005a). National Service Framework for Long Term Conditions. Available online at www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidance/PublicationsPolicyAndGuidanceArticle/fs/en?CONTENT_ID=4105361&chk=jl7dri.
94. Department of Health (2005b). Modernising Pathology: Building a Service Responsive to Patients. Available online at www.dh.gov.uk/assetRoot/04/11/97/78/04119778.pdf.
95. Department of Health (2005c). Report of the Ad Hoc Advisory Group on the Operation of NHS Research Ethics Committees. Available online at www.dh.gov.uk/assetRoot/04/11/24/66/04112466.pdf.
96. Department of Health (2005d). Review of the Human Fertilisation and Embryology Act. A Public Consultation. Available online at www.dh.gov.uk/assetRoot/04/11/78/72/04117872. pdf.
97. Department of Health (2005e). Research Governance Framework for Health and Social Care. Available online at www.dh.gov.uk/PolicyAndGuidance/ResearchAndDevelopment/ResearchAndDevelopmentAZ/ResearchGovernance/ResearchGovernanceArticle/fs/en?CONTENT_ID=4002112&chk=PJlaGg.
98. Department of Health (2005f). Creating a Patient-Led NHS: Delivering the NHS Improvement Plan. Available online at www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidance/PublicationsPolicyAndGuidance/PublicationsPolicyAndGuidanceArticle/Fs/en?CONTENT_ID=4106506&chk=ftV6vA.
99. Department of Health (2006a). Best Research for Best Health: A New National Health Service Research Strategy. Available online at www.dh.gov.uk/assetRoot/04/12/71/52/04127152.pdf.
100. Department of Health (2006b). Review of Commissioning Arrangements for Specialised Services. Available online at www.dh.gov.uk/PolicyAndGuidance/OrganisationPolicy/Commissioning/CommissioningSpecialisedServices/CommissioningSpecialisedArticle/fs/en?CONTENT_ID=4135174&chk=H2g0oV.
101. Department of Health and Association of British Insurers (2005). Concordat and Moratorium on Genetics and Insurance. Available online at www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidanceArticle/fs/en?CONTENT_ID=4105905&chk=Gor9x8.
102. Department of Health and HMGovernment (2004). The NHS Improvement Plan: Putting People at the Heart of Public Services. Available on line at www.dh.gov.uk/assetRoot/04/08/45/22/04084522.pdf.
103. Donnai, D. (2002). Genetics services. Clin. Genet. 61, 1–6.
104. Donnai, D. and Elles, R. (2001). Integrated regional genetics services: current and future provision. BMJ 322, 1048–52.
105. Downward, J. (2004). RNA interference. BMJ 328, 1245–8.
106. Emens, L. (2005). Trastuzumab: targeted therapy for the management of HER-2/neu overexpressing metastatic breast cancer. Am. J. Ther. 12, 243–53.
107. Engel, L. S., Taioli, E., Pfeiffer, R. et al. (2002). Pooled analysis and meta-analysis of glutathione Stransferase M1 and bladder cancer: a HuGE review. Am. J. Epidemiol. 156, 95–109 [Erratum in: Am. J. Epidemiol. (2002) 156, 492.]
108. Equalities Review (2005). Interim Report for Consultation. Available online at www.theequalitiesreview.org.uk/Sites/www.theequalitiesreview.org.uk/publications/interim_report.aspx.
109. European Commission (2002a). Life Sciences and Biotechnology: A Strategy for Europe. Available online at europe.eu.int/eur-lex/en/com/cnc/2002/com2002_0027en01.pdf.
110. European Commission (2002b). Procedural Modalities for Research Activities Involving Banked or Isolated Human Embryonic Stem Cells in Culture to be Funded under Council Decision 2002/834/EC. Available online at http://ec.europa.eu/research/science-society/pdf/procedural_modalities_en.pdf.
111. European Commission (2003). Commission Directive 2003/63/EC of 25 June 2003 amending Directive 2001/83/EC of the European Parliament and of the Council on the Community code relating to medicinal products for human use. Available online at europa.eu.int/eur-lex/lex/LexUriServ/LexUriServ.do?uri=CELEX:32003L0063:EN:HTML.
112. European Commission (2004a). Ethical, Legal and Social Aspects of Genetic Testing: Research, Development and Clinical Applications. Luxembourg: Office for Official Publications of the European Communities. Available online at europa.eu.int/comm/research/conferences/2004/genetic/pdf/report_en.pdf.
113. European Commission (2004b). 25 Recommendations on the Ethical, Legal and Social Implications of Genetic Testing. Luxembourg: Office for Official Publications of the European Communities. Available online at europa.eu.int/comm/research/conferences/2004/genetic/pdf/recommendations_en.pdf.
114. European Commission (2005a). Proposal for a Regulation of the European Parliament and of the Council on Advanced Therapy Medicinal Products and Amending Directive 2001/83/EC and Regulation (EC) no. 726/2004. Available online at pharmacos.eudra.org/F2/advtherapies/docs/COM_2005_567_EN.pdf.
115. European Commission (2005b). Report from the Commission to the Council and the European Parliament. Development and Implications of Patent Law in the Field of Biotechnology and Genetic Engineering. Available online at www.europa.eu.int/comm/internal_market/en/indprop/invent/com_2005_312final_en.pdf.
116. European Commission (2006). Report on the Regulation of Reproductive Cell Donation in the European Union. Available online at ec.europa.eu/health/ph_threats/human_substance/documents/tissues_frep_en.pdf.
117. European Group on Ethics in Science and New Technologies (1997). Ethical Aspects of Cloning Techniques. Available online at europa.eu.int/comm/european_group_ethics/gaieb/en/opinion9.pdf.
118. European Group on Ethics in Science and New Technologies (2000). Ethical Aspects of Human Stem Cell Research and Use. Available online at europa.eu.int/comm/european_group_ethics/docs/avis15_en.pdf.
119. European Group on Ethics in Science and New Technologies (2002). Ethical Aspects of Patenting Inventions Involving Human Stem Cells. Available online at europa.eu.int/comm/european_group_ethics/docs/avis16_en.pdf.
120. European Group on Ethics in Science and New Technologies (2003). Ethical Aspects of Genetic Testing in the Workplace. Available online at europa.eu.int/comm/european_group_ethics/docs/avis18EN.pdf.
121. European Parliament and Council (1995). Directive 95/46/EC of the European Parliament and of the Council 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. Available online at europa.eu.int/eur-lex/lex/LexUriServ/site/en/consleg/1995/L/01995L0046–20031120-en.pdf.
122. European Parliament and Council (1998a). Directive 98/79/EC of the European Parliament and of the Council of 27 October 1998 on in vitro diagnostic medical devices. Available online at europa.eu.int/eur-lex/pri/en/oj/dat/1998/l_331/l_33119981207en00010037.pdf.
123. European Parliament and Council (1998b). Directive 98/44/EC of the European Parliament and of the Council of 6 July 1998 on the legal protection of biotechnological inventions. Available online at europa.eu.int/eur-lex/pri/en/oj/dat/1998/l_213/l_21319980730en00130021.pdf.
124. European Parliament and Council (2001a). Directive 2001/20/EC of the European Parliament and of the Council of 4 April 2001 on the approximation of the laws, regulations and administrative provisions of the Member States relating to the implementation of good clinical practice in the conduct of clinical trials on medicinal products for human use (the Clinical Trials Directive). Available online at www.wctn.org.uk/downloads/EU_Directive/Directive.pdf.
125. European Parliament and Council (2001b). Directive 2001/83/EC of the European Parliament and of the Council of 6 November 2001 on the Community code relating to medicinal products for human use. Available online at europa.eu.int/eur-lex/pri/en/oj/dat/2001/l_311/l_31120011128en00670128.pdf.
126. European Parliament and Council (2004a). Directive 2004/23/EC of the European Parliament and of the Council of 31 March 2004 on setting standards of quality and safety for the donation, procurement, testing, processing, preservation, storage and distribution of human tissues and cells. Available online at europa.eu.int/eur-lex/pri/en/oj/dat/2004/l_102/l_10220040407en00480058.pdf.
127. European Parliament and Council (2004b). Directive 2004/27/EC of the European Parliament and of the Council of 31 March 2004 amending Directive 2001/83/EC on the Community code relating to medicinal products for human use. Available online at europa.eu.int/eur-lex/pri/en/oj/dat/2004/l_136/l_13620040430en00340057.pdf.
128. European Patent Office (1973, with subsequent amendments). European Patent Convention. Available online at www.european-patent-office.org/legal/epc/.
129. European Society of Human Genetics (2003). International coverage of all aspects of human genetics. Eur. J. Hum. Genet. 11, suppl. 2.
130. European Society of Human Genetics and European Society of Human Reproduction and Embryology (2005). The Interface Between Medically Assisted Reproduction and Genetics: Technical, Social and Ethical Issues (Draft Report). Available online at www.eshg.org/BGDocuAfterSevilla030605etAnnexes.pdf
131. Farrall, M. and Morris, A. P. (2005). Gearing up for genome-wide gene-association studies. Hum. Mol. Genet. 14 (Review Issue 2), R157–62.
132. Fears, R., Weatherall, D. and Poste, G. (1999). The impact of genetics on medical education and training. Br. Med. Bull. 55, 460–70.
133. Feinberg, A. P., Ohlsson, R. and Henikoff, S. (2006). The epigenetic progenitor origin of human cancer. Nat. Rev. Genet. 7, 21–3.
134. Fineman, R. (1999). Qualifications of public health geneticists? Community Genet. 2, 113–14.
135. Firth, H. and Hurst, J. (2005). Oxford Desk Reference – Clinical Genetics. Oxford: Oxford University Press.
136. Food and Drug Administration (US) (2005). Guidance for Industry. Pharmacogenomic Data Submissions. Available online at www.fda.gov/cber/gdlns/pharmdtasub.htm.
137. Fox Keller, E. (2000). The Century of the Gene. Cambridge, Mass.: Harvard University Press.
138. Gelehrter, T. D., Collins, F. and Ginsburg, D. (1998). The Principles of Medical Genetics, 2nd edn. New York: Lippincott Williams and Wilkins.
139. General Medical Council (2002). Research: The Role and Responsibilities of Doctors. Available online at www.gmc-uk.org/guidance/library/research.asp.
140. General Medical Council (2004). Confidentiality: Protecting and Providing Information. Available online at www.gmc-uk.org/guidance/library/confidentiality.asp.
141. Genomics Working Group of the Science and Technology Task Force of the United Nations Millennium Project (2003). Genomics and Global Health. Toronto: Canadian Program in Genomics and Global Health, University of Toronto Joint Centre for Bioethics.
142. Ginsburg, G. S., Konstance, R. P., Allsbrook, J. S. and Schulman, K. A. (2005). Implications of pharmacogenomics for drug development and clinical practice. Arch. Intern. Med. 165, 2331–6.
143. Grace, J., El Toukhy, T. and Braude, P. (2004) Pre-implantation genetic testing. Br. J. Obstet. Gynaecol. 111, 1165–73.
144. Green, J. M., Hewison, J., Bekker, H. L., Bryant, L. D. and Cuckle, H. S. (2004). Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review. Health Technol Assess. 8, 1–109.
145. Green, M. J. and Botkin, J. R. (2003). ‘Genetic exceptionalism’ in medicine: clarifying the differences between genetic and nongenetic tests. Ann. Intern. Med. 1, 571–5.
146. Grice, G. R., Seaton, T. L., Woodland, A. M. and McLeod, H. L. (2006). Defining the opportunity for pharmacogenetic intervention in primary care. Pharmacogenomics 7, 61–5.
147. Guttmacher, A. E. and Collins, F. S. (2002). Genomic medicine – a primer. N. Engl. J. Med. 347, 1512–20.
148. Guttmacher, A. E. and Collins, F. S. (2005). Realizing the promise of genomics in biomedical research. J. Am. Med. Assoc. 294, 1399–402.
149. Gwinn, M. and Khoury, M. J. (2002). Research priorities for the public health sciences in the post-genomic era. Genet. Med. 4, 410–11.
150. Hadfield, S. G. and Humphries, S. E. (2005). Implementation of cascade testing for the detection of familial hypercholesterolaemia. Curr. Opin. Lipidol. 16, 428–33.
151. Haga, S. B., Khoury, M. J. and Burke, W. (2003). Genomic profiling to promote a health lifestyle: not ready for prime time. Nat. Genet. 34, 347–50.
152. Halliday, J. L., Collins, V. R., Aitken, M. A., Richards, M. P. and Olsson, C. A. (2004). Genetics and public health – evolution, or revolution? J. Epidemiol. Community Health 58, 894–9.
153. Harris, J. (2000). Is there a coherent social conception of disability? J. Med. Ethics 26, 95–100.
154. Harris, J. and Holm, S., eds. (1998). The Future of Human Reproduction: Ethics, Choice and Regulation. Oxford: Clarendon Press.
155. Hattersley, A. T. and McCarthy, M. I. (2005). What makes a good genetic association study? Lancet 366, 1315–23.
156. Healthcare Industry Task Force (2004). Better Health Through Partnership. Available online at www.dh.gov.uk/assetRoot/04/09/52/23/04095223.pdf.
157. Hedgecoe, A. (2001). Ethical boundary work: geneticisation, philosophy and the social sciences. Med. Health Care Philosoph. 4, 305–9.
158. Hernandez, L. ed.: Committee on Genomics and the Public's Health in the Twenty-First Century, Institute of Medicine (2005). Implications of Genomics for Public Health. Workshop Summary. Washington, D. C.: National Academies Press.
159. Hinxton Group (2006). An International Consortium on Stem Cells, Ethics and Law. Consensus Statement. Available online at www.hopkinsmedicine.org/bioethics/finalsc.doc.
160. Hirschhorn, J. N. and Daly, M. J. (2005). Genome-wide association studies for common diseases and complex traits. Nat. Rev. Genet. 6, 95–108.
161. HM Treasury, Department of Trade and Industry and Department for Education and Skills (2004). Science and Innovation Investment Framework 2004–2014. Available online at www.hm-treasury.gov.uk/spending_review/spend_sr04/associated_documents/spending_sr04_science.cfm.
162. Hodge, J. G. Jr (2004). Ethical issues concerning genetic testing and screening in public health. Am. J. Med. Genet. C. Semin. Med. Genet. 125, 66–70.
163. Holtzman, N. A. (1989). Proceed with Caution: Predicting Genetic Risks in the Recombinant DNA Era. Baltimore: Johns Hopkins University Press.
164. Holtzman, N. A. (2006). What role for public health in genetics and vice versa? Community Genet. 9, 8–20.
165. Holtzman, N. A. and Marteau, T. M. (2000). Will genetics revolutionize medicine? N. Engl. J. Med. 343, 141–4.
166. Hood, L., Heath, J. R., Phelps, M. E. and Lin, B. (2004). Systems biology and new technologies enable predictive and preventive medicine. Science 306, 640–3.
167. Hopper, J. L., Bishop, D. T. and Easton, D. F. (2005). Population based family studies in genetic epidemiology. Lancet 366, 1397–406.
168. House of Commons Health Committee (2005). The Influence of the Pharmaceutical Industry. London: The Stationery Office. Available online at www.publications.parliament.uk/pa/cm200405/cmselect/cmhealth/42/42.pdf.
169. House of Commons Select Committee on Science and Technology (1995). Human Genetics: The Science and its Consequences. Third Report of the House of Commons Science and Technology Committee. London: HMSO.
170. House of Commons Select Committee on Science and Technology (2001). Genetics and Insurance. Available online at www.publications.parliament.uk/pa/cm200001/cmselect/cmsctech/174/17402.htm.
171. House of Commons Select Committee on Science and Technology (2002). Developments in Human Genetics and Embryology. London: The Stationery Office. Available online at http://www.publications.parliament.UK/pa/cm200102/cmselect/cmsctech/791/79103. htm.
172. House of Commons Select Committee on Science and Technology (2005). Human Reproductive Technologies and the Law. London: The Stationery Office. Available online at http://www.publications.parliament.UK/pa/cm200405/cmselect/cmsctech/7/702.htm.
173. House of Lords Select Committee on Science and Technology (2000). Science and Society. Available online at www.publications.parliament.uk/pa/ld199900/ldselect/ldsctech/38/3801.htm.
174. House of Lords Select Committee on Science and Technology (2001). Human Genetic Databases: Challenges and Opportunities. Available online at www.publications.parliament.uk/pa/ld200001/ldselect/ldsctech/57/5701.htm.
175. House of Lords Stem Cell Research Committee (2002). Stem Cell Research. Available online www.parliament.the-stationery-office.co.uk/pa/ld200102/ldselect/ldstem/83/8301.htm.
176. Hubbard, R. and Wald, E. (1997). Exploding the Gene Myth. Boston: Beacon Press.
177. Hudson, K. L., Rothenburg, K. H., Andrews, L. B., Kahn, M. J. and Collins, F. S. (1995). Genetic discrimination and health insurance: an urgent need for reform. Science 270, 391–3.
178. Human Fertilisation and Embryology Authority (2003a). Code of practice, 6th edn. Available online at www.hfea.gov.uk/HFEAPublications/CodeofPractice/Code%20of%20Practice%20Sixth%20Edition%20-%20final.pdf.
179. Human Fertilisation and Embryology Authority (2003b). Sex Selection: Report Summary. Available online at www.hfea.gov.uk/AboutHFEA/Consultations/Final%20sex%20selection%20summary.pdf.
180. Human Fertilisation and Embryology Authority (2004a). Report of the Preimplantation Tissue Typing Policy Review. Available online at www.hfea.gov.uk/AboutHFEA/HFEAPolicy/Preimplantationtissuetyping.
181. Human Fertilisation and Embryology Authority (2004b). Report of the Sperm Egg and Embryo Donation (SEED) Review. Available online at www.hfea.gov.uk/PressOffice/TheSEEDReview.
182. Human Fertilisation and Embryology Authority (2004c). The Human Fertilisation and Embryology Authority (Disclosure of Donor Information) Regulations 2004. Statutory instruments 2004 1511. London: The Stationery Office. Available online at www.opsi.gov.uk/si/si2004/20041511.htm.
183. Human Fertilisation and Embryology Authority (2005). Choices and Boundaries. Should People be Able to Select Embyros Free From an Inherited Susceptibility to Cancer? Available online at www.hfea.gov.uk/AboutHFEA/Consultations.
184. Human Genetics Advisory Commission (1999). The Implications of Genetic Testing for Employment. Available online at www.advisorybodies.doh.gov.uk/hgac/papers/paperg1.htm.
185. Human Genetics Advisory Commission and Human Fertilisation and Embryology Authority (1998). Cloning Issues in Reproduction, Science and Medicine. Available online at www.hfea.gov.uk/AboutHFEA/Consultations/1998%20December%20Cloning%20Issue%20in%20Reproduction%20Science%20and%20Medicine%20Report.pdf.
186. Human Genetics Commission (2001). Public Attitudes to Human Genetic Information. Available online at www.hgc.gov.uk/UploadDocs/DocPub/Document/morigeneticattitudes.pdf.
187. Human Genetics Commission (2002). Inside Information: Balancing Interests in the Use of Personal Genetic Data. Available online at www.hgc.gov.uk/UploadDocs/DocPub/Document/insideinformation_summary.pdf.
188. Human Genetics Commission (2003). Genes Direct. Ensuring the Effective Oversight of Genetic Tests Supplied Direct to the Public. Available online at www.hgc.gov.uk/UploadDocs/DocPub/Document/genesdirect_full.pdf.
189. Human Genetics Commission (2004). Choosing the Future: Genetics and Reproductive Decision Making. Consultation document available online at www.hgc.gov.uk/UploadDocs/DocPub/Document/ChooseFuturefull.pdf.
190. Human Genetics Commission (2005). Profiling the Newborn: A Prospective Gene Technology? Available online at www.hgc.gov.uk/uploadDocs/Contents/Documents/final%20Draft%20of%20Profiling%20Newborn%20/Report%2003%2005.pdf.
191. Human Genetics Commission (2006a). Making Babies: Reproductive Decisions and Genetic Technologies. Available online at www.hgc.gov.uk/UploadDocs/DocPub/Document/Making%20Babies%20Report%20-%20final%20pdf.pdf.
192. Human Genetics Commission (2006b). Genetic Testing and Employment. (Letter to Lord Sainsbury, Parliamentary Under-Secretary of State for Science and Innovation). Available online at www.hgc.gov.uk/UploadDocs/Contents/Documents/For%20web%20-%20%20Lord%20Sainsbury%20prevalence%20of%20genetic%20testing%20 response.doc.
193. Hunt, S. C., Gwinn, M. and Adams, T. D. (2003). Family history assessment: strategies for the prevention of cardiovascular disease. Am. J. Prev. Med. 24, 136–42.
194. Hunter, A. and Humphries, S. E. (2005). Family history of breast cancer and cost of life insurance: a test case comparison of current UK industry practice. BMJ 331, 1438–9.
195. Hunter, D. J. (2005). Gene–environment interactions in human disease. Nat. Rev. Genet. 6, 287–98.
196. Information Commissioner (2002). Use and Disclosure of Health Data. Guidance on the Application of the Data Protection Act 1998. Available online at ico-cms.amaze.co.uk/DocumentUploads/use%20and%20disclosure%20of%20health%20data.pdf.
197. Information Commissioner (2005a). Employment practices code. Available online at www.ico.gov.uk/upload/documents/library/data_protection/practical_application/ICO_EmpPracCode.pdf.
198. Information Commissioner (2005b). Employment Practices Code. Supplementary Guidance. Managing Data Protection. Available online at http://www.ico.gov.uk/upload/documents/library/data_protection/practical_application/ico_suppgdnce.pdf.
199. Ioannidis, J. P., Gwinn, M., Little, J. et al. (2006). A road map for efficient and reliable human genome epidemiology. Nat. Genet. 38, 3–5.
200. Jackson, E. (2001). Regulating Reproduction: Law, Technology and Autonomy. Oxford: Hart Publishing.
201. Janssens, A. C., Pardo, M. C., Steyerberg, E. W. and van Duijn, C. M. (2005). Revisiting the clinical validity of multiplex genetic testing in complex diseases. Am. J. Hum. Genet. 74, 585–8.
202. Joint Committee on Medical Genetics (2006). Consent and Confidentiality. London: British Society of Human Genetics, Royal College of Pathologists, Royal College of Physicians.
203. Jones, M. and Salter, B. (2003). The governance of human genetics: policy discourse and constructions of public trust. New Genet. Soc. 22, 21–41.
204. Juengst, E. T. (1995). ‘Prevention’ and the goals of geneticmedicine. Hum. Gene Ther. 6, 1595–605.
205. Kanehisa, M. and Bork, P. (2003). Bioinformatics in the post-sequence era. Nat. Genet. 33, 305–10.
206. Kaput, J., Ordovas, J. M., Ferguson, L. et al. (2005). The case for strategic international alliances to harness nutritional genomics for public and personal health. Br. J. Nutr. 94, 623–32.
207. Kelada, S. N., Eaton, D. L., Wang, S. S., Rothman, N. R. and Khoury, M. J. (2003). The role of genetic polymorphisms in environmental health. Environ. Health Perspect. 111, 1055–64.
208. Kerr, A. and Shakespeare, T. (1999). Genetic Politics: From Eugenics to Genome (Issues in Social Policy). Cheltenham: New Clarion Press.
209. Kevles, D. J. (1995). In the Name of Eugenics: Genetics and the Uses of Human Heredity. Cambridge, Mass.: Harvard University Press.
210. Khoury, M. J. (1996). From genes to public health: application of genetics in disease prevention. Am. J. Public Health. 86, 1717–22.
211. Khoury, M. J. (2003). Genetics and genomics in practice. The continuum from genetic disease to genomic information in health and disease. Genet. Med. 5, 261–8.
212. Khoury, M. J. (2004). The case for a global human genome epidemiology initiative. Nat. Genet. 36, 1027–8.
213. Khoury, M. J. and Mensah, G. A. (2005). Genomics and the prevention and control of common chronic diseases: emerging priorities for public health action. Prev. Chronic Dis. [serial online] April. Available online at www.cdc.gov/pcd/issues/2005/apr/05_0011.htm.
214. Khoury, M. J., Burke, W. and Thomson, E. J., eds. (2000). Genetics and Public Health in the 21st Century. New York: Oxford University Press.
215. Khoury, M. J., McCabe, L. L. and McCabe, E. R. B. (2003). Genomic medicine: population screening in the age of genomic medicine. N. Engl. J. Med. 348, 50–8.
216. Khoury, M. J., Little, J. and Burke, W. eds. (2004a). Human Genome Epidemiology. Oxford: Oxford University Press.
217. Khoury, M. J., Little, J. and Burke, W. eds. (2004b). Human Genome Epidemiology. Part III. Methods and Approaches II: Assessing Genetic Tests for Disease Prevention, pp. 195–301. Oxford: Oxford University Press.
218. Khoury, M. J., Yang, Q., Gwinn, M., Little, J. and Dana Flanders, W. (2004c). An epidemiologic assessment of genomic profiling for measuring susceptibility to common diseases and targeting interventions. Genet. Med. 6, 38–47.
219. Khoury, M. J., Davis, R., Gwinn, M., Lindegren, M. L. and Yoon, P. (2005). Do we need genomic research for the prevention of common diseases with environmental causes? Am. J. Epidemiol. 161, 799–805.
220. King, R. A., Rotter, J. I. and Motulsky, A. G. (2002). The Genetic Basis of Common Diseases, 2nd edn. New York: Oxford University Press.
221. Kirkman, M. (2005). Public health and the challenge of genomics. Aust. N. Z. J. Public Health 29, 163–5.
222. Knoppers, B. M. and Fecteau, C. (2003). Human genomic databases: a global public good? Eur. J. Health Law 10, 27–41.
223. Knoppers, B. M., Bordet, S. and Isasi, R. M. (2006). Preimplantation genetic diagnosis: an overview of socio-ethical and legal considerations. Annu. Rev. Genomics Hum. Genet. 7, 201–21.
224. Krause, D. E. and Van Etten, R. A. (2005). Tyrosine kinases as targets for cancer therapy. N. Engl. J. Med. 353, 172–87.
225. Kroese, M., Zimmern, R. and Sanderson, S. (2004). Genetic tests and their evaluation: can we answer the key questions? Genet. Med. 6, 475–80.
226. Kwiatkowski, D. P. (2005). How malaria has affected the human genome and what human genetics can teach us about malaria. Am. J. Hum. Genet. 77, 171–92.
227. Lambert, D. (2003). Lambert Review of Business–University Collaboration. Available online at www.hm-treasury.gov.uk/media/EA556/lambert_review_final_450.pdf.
228. Last, J. M. ed. (2001). A Dictionary of Epidemiology, 4th edn. New York: Oxford University Press.
229. Laurie, G. (2002). Genetic Privacy: A Challenge to Medico-Legal Norms. Cambridge: Cambridge University Press.
230. Lee, R. G. and Morgan, D. (2001). Human Fertilisation and Embryology: Regulating the Reproductive Revolution. London: Blackstone Press.
231. Lenaghan, J. (1998). Brave New NHS: The Impact of the New Genetics on the Health Service. London: Institute of Public Policy Research.
232. Lerman, C. and Shields, A. E. (2004). Genetic testing for cancer susceptibility: the promise and the pitfalls. Nat. Rev. Cancer 4, 235–41.
233. Lewontin, R. C., Rose, S. and Kamin, L. (1984). Not in our Genes. New York: Pantheon Books.
234. Liddell, K. and Hall, A. (2005). Beyond Bristol and Alder Hey: the future regulation of human tissue. Med. Law Rev. 13, 137–69.
235. Liddell, K. and Wallace, S. (2005). Emerging regulatory issues for human stem cell medicine. Genomics, Society and Policy 1, 54–73. Available online at www.gspjournal.com/.
236. Liddell, K., Menon, D.K. and Zimmern, R. (2004). The human tissue bill and the mental capacity bill. New regulations are needed to make useful research possible. BMJ 328, 1510–11.
237. Little, J. and Khoury, M. J. (2003). Mendelian randomisation: a new spin or real progress? Lancet 362, 930–1.
238. Little, J., Bradley, L., Bray, M. S. et al. (2002). Reporting, appraising, and integrating data on genotype prevalence and gene–disease associations. Am. J. Epidemiol. 156, 300–10.
239. Little, J., Sharp, L., Khoury, M. J., Bradley, L. and Gwinn, M. (2005). The epidemiologic approach to pharmacogenomics. Am. J. Pharmacogenomics 5, 1–20.
240. Lockwood, M. (2001). The moral status of the human embryo. Hum. Fertil. 4, 267–9.
241. London IDEAS Genetics Knowledge Park (2004). Reality Not Hype: The New Genetics in Primary Care. Available online at www.londonideas.org/internet/events/documents/hunterbooklet.pdf.
242. Lowrance, W. W. (2002). Learning From Experience. Privacy and the Secondary Use of Data in Health Research. London: The Nuffield Trust. Available online at www.nuffieldtrust.org.uk/publications/detail.asp?id=0&PRid=45.
243. Lowrance, W. W. (2006). Access to Collections of Data and Materials for Health Research. London: Medical Research Council and Wellcome Trust. Available online at www.mrc.ac.uk/index/strategy-strategy/strategy-science_strategy/strategy-strategy_implementation/strategy-other_initiatives/strategy-data_sharing/strategy-data_sharing_implementation/research_collection_access.htm.
244. Lucassen, A., Parker, M. and Wheeler, R. (2006). Implications of data protection legislation for family history. BMJ 332, 299–301.
245. Ludlam, C. A., Pasi, K. J., Bolton-Maggs, P. et al. (2005). A framework for genetic service provision for haemophilia and other inherited bleeding disorders. Haemophilia 11, 145–63.
246. Maier, L. (2002). Genetic and exposure risks for chronic beryllium disease. Clin. Chest Med. 23, 827–39.
247. Marteau, T. M. and Lerman, C. (2001). Genetic risk and behavioural change. BMJ 322, 1056–9.
248. Marteau, T. M. and Richards, M. eds. (1999). The Troubled Helix: Social and Psychological Implications of the New Human Genetics. Cambridge: Cambridge University Press.
249. Martin, N. G., Eaves, L. J. and Fulker, D. W. (1978). The power of the classical twin study. Heredity 40, 97–116.
250. Martinez Arias, A. and Stewart, A. (2002). Molecular Principles of Animal Development. Oxford: Oxford University Press.
251. Mason, K. and Laurie, G. (2006). Mason and McCall Smith's Law and Medical Ethics. Oxford: Oxford University Press.
252. Mathews, K. A., Kalfoglou, A. and Hudson, K. (2005). Geneticists’ views on science policy formation and public outreach. Am. J. Med. Genet. 137, 161–9.
253. McCabe, L. L. and McCabe, E. R. (2004). Genetic screening: carriers and affected individuals. Annu. Rev. Genomics Hum. Genet. 5, 57–69.
254. McCandless, S. E., Brunner, J. W. and Cassidy, S. B. (2004). The burden of genetic disease on inpatient care in a children's hospital. Am. J. Hum. Genet. 74, 121–7.
255. McGee, G., Brakman, S. V. and Gurmankin, A. D. (2001). Gamete donation and anonymity. Disclosure to children conceived with donor gametes should not be optional. Hum. Reprod. 16, 2033–6.
256. McGlennan, T. (2001). Insurance and Genetic Information. Association of British Insurers Research Report.
257. McHale, J. (2004). Regulating genetic databases: some legal and ethical issues. Med. Law Rev. 12, 70–96.
258. McKusick, V. A. (1998). Mendelian Inheritance in Man, 12th edn. Baltimore: Johns Hopkins University Press.
259. McVean, G., Spencer, C. C. A. and Chaix, R. (2005). Perspectives on human genetic variation from the HapMap project. PloS Genetics 1: e54.
260. Medical Research Council (undated). Stem Cell Therapy. Available online at www.mrc.ac.uk/pdf_stem_cells.pdf.
261. Medical Research Council (2000, with update in 2003). Personal Information in Medical Research. Available online at www.mrc.ac.uk/pdf-pimr.pdf.
262. Melzer, D. and Zimmern, R. (2002). Genetics and medicalisation. BMJ 321, 863–4.
263. Melzer, D., Raven, A., Detmer, D. E., Ling, T. and Zimmern, R. L. (2003). My Very Own Medicine. What Must I Know? Information Policy for Pharmacogenetics. Cambridge UK: Public Health Genetics Unit. Available online at www.phgu.org.uk/about_phgu/pharmacogenetics.html.
264. Merikangas, K. R. and Risch, N. (2003). Genomic priorities and public health. Science 302, 599–601.
265. Meyer, U. A. (2004). Pharmacogenetics – five decades of therapeutic lessons from genetic diversity. Nat. Rev. Genet. 5, 669–76.
266. Modell, B. and Kuliev, A. (1998). The history of community genetics: the contribution of the haemoglobin disorders. Community Genet. 1, 3–12.
267. Mount, D. W. and Pandey, R. (2005). Using bioinformatics and genome analysis for new therapeutic interventions. Mol. Cancer Ther. 4, 1636–43.
268. Mulkay, M. (1997). The Embryo Research Debate: Science and the Politics of Reproduction. Cambridge: Cambridge University Press.
269. Muller, M. and Kersten, S. (2003). Nutrigenomics: goals and strategies. Nat. Rev. Genet. 4, 315–22.
270. Murray, T. (1997). Genetic exceptionalism and ‘future diaries’: is genetic information different from other medical information? In Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era, ed. M. A. Rothstein, pp. 60–73. New Haven: Yale University Press.
271. Narod, S. A. and Offit, K. (2005). Prevention and management of hereditary breast cancer. J. Clin. Oncol. 23, 1656–63.
272. National Collaborating Centre for Women's and Children's Health (2003). Antenatal Care: Routine Care for the Healthy Pregnant Woman. Available online at www.rcog.org.uk/resources/Public/pdf/Antenatal_Care.pdf.
273. National Institute for Clinical Excellence and National Collaborating Centre for Primary Care (2004). Familial Breast Cancer Guidelines. Available online at www.nice.org.uk/page.aspx?o=203181.
274. Neil, H. A., Hammond, T., Mant, D. and Humphries, S. E. (2004). Effect of statin treatment for familial hypercholesterolaemia on life assurance: results of consecutive surveys in 1990 and 2002. BMJ 328, 500–1.
275. Nelkin, D. and Lindee, M. S. (1995). The DNA Mystique: The Gene as a Cultural Icon. New York: W. H. Freeman and Co.
276. NHS Central Research and Development Committee (1995a). Genetics of Common Disease. London: Department of Health.
277. NHS Central Research and Development Committee (1995b). Report of the Genetics Research Advisory Group. London: Department of Health.
278. Nicholson, R. (2004). Another threat to research in the United Kingdom. BMJ 328, 1212–13.
279. Nowlan, W. (2002). A rational view of insurance and genetic information. Science 297, 195–6.
280. Nuffield Council on Bioethics (1998). Mental Disorders and Genetics. London: Nuffield Council on Bioethics. Available online at www.nuffieldbioethics.org/go/ourwork/mentaldisorders/introduction.
281. Nuffield Council on Bioethics (2001). Stem Cell Therapy: The Ethical Issues. London: Nuffield Council on Bioethics. Available online at www.nuffieldbioethics.org/go/ourwork/stemcells/publication_304.html.
282. Nuffield Council on Bioethics (2002a). The Ethics of Patenting DNA. London: Nuffield Council on Bioethics. Available online at www.nuffieldbioethics.org/go/ourwork/patentingdna/publication_310.html.
283. Nuffield Council on Bioethics (2002b). Genetics and Behaviour: the Ethical Context. London: Nuffield Council on Bioethics. Available online at www.nuffieldbioethics.org/go/ourwork/behaviouralgenetics/introduction.
284. Nuffield Council on Bioethics (2003). Pharmacogenetics: Ethical Issues. Available online at www.nuffieldbioethics.org/go/ourwork/pharmacogenetics/introduction.
285. O’Connor, T. P. and Crystal, R. G. (2006). Genetic medicines: treatment strategies for hereditary disorders. Nat. Rev. Genet. 7, 261–76.
286. Office of Science and Technology (1999). The advisory and regulatory framework for biotechnology: report from the Government's review. Available on line at www.ost.gov.uk/policy/issues/biotech_report/index.htm.
287. Office of Science and Technology and The Wellcome Trust (2000). Science and the Public: A Review of Science Communication and Public Attitudes to Science in Britain. Available online at www.wellcome.ac.uk/doc_WTD003420.html.
288. Ogilvie, C. M., Lashwood, A., Chitty, L., Waters, J. J., Scriven, P. N. and Flinter, F. (2005). The future of prenatal diagnosis: rapid testing or full karyotype? An audit of chromosone abnormalities and pregnancy outcomes for women referred for Down's Syndrome testing. Br. J. Obstet. Gynaecol. 112, 1369–75.
289. Ojha, R. P. and Thertulien, R. (2005). Health care policy issues as a result of the genetic revolution: implications for public health. Am. J. Public Health 95, 385–8.
290. Organisation for Economic Cooperation and Development (1980). Guidelines for the Protection of Privacy and Transborder Flows of Personal Data. Available online at www.oecd.org/document/18/0,2340, en_2649_34255_1815186_1_1_1_1,00.html.
291. Organisation for Economic Cooperation and Development (2001). Genetic Testing. Policy Issues for the New Millennium. Available online at www.oecd.org/document/16/0,2340, en_2649_37407_1895632_1_1_1_37407,00.html.
292. Organisation for Economic Cooperation and Development (2005). Quality Assurance and Proficiency Testing for Molecular Genetic Testing. A Survey of 18 OECD Member Countries. Available online at http://www.oecd.org/dataoecd/25/12/34779945.pdf.
293. Organisation for Economic Cooperation and Development (2006). Guidelines for the Licensing of Genetic Inventions. Available online at www.oecd.org/document/26/0,2340, en_2649_34537_34317658_1_1_1_1,00.html.
294. Ott, M. G., Schmidt, M., Schwarzwaelder, K. et al. (2006). Correction of x-linked chronic granulomatous disease by gene therapy, augmented by insertional activation of MDS1-EVI1, PRDM16 or SETBP1. Nat. Med. 12, 401–9.
295. Palmer, L. J. and Cardon, L. R. (2005). Shaking the tree: mapping complex disease genes with linkage disequilibrium. Lancet 366, 1223–34.
296. Pandor, A., Eastham, J., Beverley, C., Chilcott, J. and Paisley, S. (2004). Clinical effectiveness and cost-effectiveness of neonatal screening for inborn errors of metabolism using tandem mass spectrometry: a systematic review. Health Technol. Assess. 8, no.12. Available online at www.ncchta.org/execsumm/summ812.htm.
297. Parliamentary Office of Science and Technology (2003a). Medical Self-Test Kits. Postnote number 194. Available online at www.parliament.uk/post/pn194.pdf.
298. Parliamentary Office of Science and Technology (2003b). Public Dialogue in Science and Technology. Postnote number 189. Available online at www.parliament.uk/post/pn189.pdf.
299. Parliamentary Office of Science and Technology (2004a). NHS Genetic Testing. Postnote number 227. Available online at www.parliament.uk/documents/upload/POSTpn227.pdf.
300. Parliamentary Office of Science and Technology (2004b). Regulating Stem Cell Therapies. Postnote number 221. Available online at www.parliament.uk/documents/upload/POST pn221.pdf.
301. Parliamentary Office of Science and Technology (2005a). Data Protection and Medical Research. Postnote number 235. Available online at www.parliament.uk/documents/upload/POSTpn235.pdf.
302. Parliamentary Office of Science and Technology (2005b). Gene Therapy. Postnote number 240. Available online at www.parliament.uk/documents/upload/POSTpn240.pdf.
303. Parry, B. (2004). Trading the Genome: Investigating the Commodification of Bio-Information. New York: Columbia University Press.
304. Patrizio, P., Mastroianni, A. C. and Mastroianni, L. (2001). Disclosure to children conceived with donor gametes should be optional. Hum Reprod. 16, 2036–8.
305. Patterson, S. D. and Aebersold, R. H. (2003). Proteomics: the first decade and beyond. Nat. Genet. 33, 311–23.
306. Pencheon, D., Guest, C., Melzer, D. and Gray, M. eds. (2006). The Oxford Handbook of Public Health Practice. Oxford: Oxford University Press.
307. Pennisi, E. (2004). Searching for the genome's second code. Science 306, 632–5.
308. Petersen, K. (2006). The rights of donor-conceived children to know the identity of their donor. In Globalization and Health. Challenges for Health Law and Bioethics, eds. B. Bennett and G. F. Tomossy, pp. 151–67. New York: Springer.
309. Pharoah, P. D., Antoniou, A., Bobrow, M., Zimmern, R. L., Easton, D. F. and Pondes, B.A. (2002). Polygenic susceptibility to breast cancer and implications for prevention. Nat. Genet. 31, 33–6.
310. Phillips, K. A., Veenstra, D. L. and Sadee, W. (2000). Implications of the genetics revolution for health services research: pharmacogenomics and improvements in drug therapy. Health Serv. Res. 35, 128–40.
311. Pollock, A., McNally, N. and Kerrison, S. (2006). Best research. BMJ 332, 247–8.
312. Powell, L. W., Dixon, J. L. and Hewett, D. G. (2005). Role of early case detection by screening relatives of patients with HFE-associated hereditary haemochromatosis. Best Pract. Res. Clin. Haematol. 18, 221–34.
313. Qureshi, N., Modell, B. and Modell, M. (2004). Timeline: raising the profile of genetics in primary care. Nat. Rev. Genet. 5, 783–90.
314. R (on the application of Quintavalle) v Human Fertilisation and Embryology Authority (2002) EWHC 2785. High Court judgment available online at www.hmcourts-service.gov.uk/judgmentsfiles/j1474/quintavalle_v_human_fertilisation.htm.
315. R (on the application of Quintavalle) v Human Fertilisation and Embryology Authority (2003) EWCA Civ 667. Appeal Court judgment available online at www.bailii.org/cgi-bin/markup.cgi?doc=/ew/cases/EWCA/Civ/2003/667.html&query=Quintavalle&method=all.
316. R (on the application of Quintavalle) v Human Fertilisation and Embryology Authority (2005) UKHL 28. House of Lords judgment available online at www.publications.parliament.uk/pa/ld200405/ldjudgmt/jd050428/quint-1.htm.
317. R (on the application of Bruno Quintavalle on behalf of Pro-Life Alliance) v Secretary of State for Health (2001) EWHC Admin 918. High Court judgment available on line at www.bailii.org/cgi-bin/markup.cgi?doc=/ew/cases/EWHC/Admin/2001/918.html&query=quintavalle&method=all.
318. R (on the application of Quintavalle) v Secretary of State for Health (2002) EWCA Civ 29. Appeal Court judgment.
319. R v Secretary of State for Health (respondent) ex parte Quintavalle (on behalf of Pro-Life Alliance) (appellant) (2003) UKHL 13. House of Lords judgment available online at www.publications.parliament.uk/pa/ld200203/ldjudgmt/jd030313/quinta-1.htm.
320. Reindal, S. M. (2000). Disability, gene therapy and eugenics – a challenge to John Harris. J. Med. Ethics 26, 89–94.
321. Richards, M. P. M. (1996). Lay and professional knowledge of genetics and inheritance. Public Underst. Sci. 5, 217–30.
322. Richards, M. P. M. (1997). It runs in the family: lay knowledge about inheritance. In Culture, Kinship and Genes, ed. A. Clark, pp. 175–94. Basingstoke: Macmillan Publishers.
323. Richards, M. (2001). How distinctive is genetic information? Stud. Hist. Phil. Biol.&Biomed. Sci. 32, 663–87.
324. Richmond, M. (1999). Human Genomics: Prospects for Health Care and Public Policy. London: University College London School of Public Policy.
325. Ridley, M. (1999). Genome: The Autobiography of a Species in 23 Chapters. New York: Harper Collins.
326. Ridley, M. (2003). Nature Via Nurture. Genes, Experience and What Makes us Human. London: Fourth Estate.
327. Risch, N., Burchard, E., Ziv, E. and Tang, H. (2002). Categorisation of humans in biomedical research: genes, race and disease. Genome Biol. 3: comment 2007. Epub 2002 Jul 1.
328. Romero, R., Kuivaniemi, H., Tromp, G. and Olson, J. (2002). The design, execution, and interpretation of genetic association studies to decipher complex diseases. Am. J. Obstet. Gynecol. 187, 1299–312.
329. Rose, G. (1985). Sick individuals and sick populations. Int. J. Epidemiol. 14, 32–8.
330. Rose, P. and Lucassen, A. (1999). Practical Genetics for Primary Care. Oxford: Oxford University Press.
331. Roses, A. D. (2002). Genome-based pharmacogenetics and the pharmaceutical industry. Nat. Rev. Drug Discov. 1, 541–9.
332. Rothman, K. J. (2002). Epidemiology: An Introduction. Oxford: Oxford University Press.
333. Rothman, K. J. and Greenland, S., eds. (1998). Modern Epidemiology, 2nd edn. Baltimore: Lippincott Williams and Wilkins.
334. Royal College of Physicians (1996). Clinical Genetics into the Twenty-First Century. London: Royal College of Physicians.
335. Royal College of Physicians (1998a). Clinical Genetic Services: Activity, Outcome, Effectiveness and Quality. London: Royal College of Physicians.
336. Royal College of Physicians (1998b). Retention of Medical Records with Particular Reference to Medical Genetics. London: Royal College of Physicians.
337. Royal College of Physicians (1998c). Commissioning Clinical Genetic Services. London: Royal College of Physicians.
338. Royal College of Physicians (2004). Human Tissue Bill. Response from the Royal College of Physicians. Available online at www.rcplondon.ac.uk/college/statements/response_htb.htm.
339. Royal Liverpool Children's Inquiry, The (2001). The Royal Liverpool Children's Inquiry report. London: The Stationery Office. Available online at www.rlcinquiry.org.uk/download/index.htm.
340. Royal Society, The (1998). Whither Cloning? Available online at www.royalsoc.ac.uk/displaypagedoc.asp?id=11525.
341. Royal Society, The (2003). Keeping Science Open: The Effects of Intellectual Property Policy on the Conduct of Science. Available online at www.royalsoc.ac.uk/document.asp?tip=0&id=1374.
342. Royal Society, The (2003). Stem Cell Research and Therapeutic Cloning: An Update. Available online at www.royalsoc.ac.uk/displaypagedoc.asp?id=11474.
343. Royal Society, The (2005). Personalised Medicine: Hopes and Realities. Available online at www.royalsoc.ac.uk/document.asp?tip=0&id=3780.
344. Royal Society, The (2006). Science and the Public Interest. Communicating the Results of New Scientific Research to the Public. Available online at www.royalsoc.ac.uk/downloaddoc.asp?id=2879.
345. Sadee, W. and Dai, Z. (2005). Pharmacogenetics/genomics and personalized medicine. Hum. Mol. Genet. 14 Review issue 2, R207–14.
346. Sakar, S. (1998). Genetics and Reductionism: a Primer. Cambridge: Cambridge University Press.
347. Salanti, G., Sanderson, S. and Higgins, J. P. (2005). Obstacles and opportunities in meta-analysis of genetic association studies. Genet. Med. 7, 13–20.
348. Salanti, G., Higgins, J. P. T. and White, I. R. (2006). Bayesian synthesis of epidemiological evidence with different combinations of exposure groups: application to a gene–gene–environment interaction. Stat. Med. 25, 4147–63.
349. Sanchez-Martin, F., Iakovidis, I., Nørager, S. et al. (2004). Synergy between medical informatics and bioinformatics: facilitating genomic medicine for future health care. J. Biomed. Inform. 37, 30–42.
350. Sanderson, S., Emery, J. and Higgins, J. (2005a). CYP2C9 variants, drug dose, and bleeding risk in warfarin-treated patients: a HuGENet systematic review and meta-analysis. Genet. Med. 7, 97–104.
351. Sanderson, S., Zimmern, R., Kroese, M., Higgins, J., Patch, C. and Emery, J. (2005b). How can the evaluation of genetic tests be enhanced? Lessons learned from the ACCE framework and evaluating genetic tests in the United Kingdom. Genet. Med. 7, 495–500.
352. Sankar, P. (2003). Genetic privacy. Annu. Rev. Med. 54, 393–407.
353. Scheuner, M. T., Yoon, P. W. and Khoury, M. J. (2004). Contribution of Mendelian disorders to common chronic disease: opportunities for recognition, intervention, and prevention. Am. J. Med. Genet. C. Semin. Med. Genet. 125, 50–65.
354. Schmitz, D. and Wiesing, U. (2006). Just a family medical history? BMJ 332, 297–9.
355. Sconce, E. A., Khan, T. I., Wynne, H. A., et al. (2005). The impact of CYP2C9 and VKORC1 genetic polymorphism and patient characteristics upon warfarin dose requirements: proposal for a new dosing regimen. Blood 106, 2329–33.
356. Secretary's Advisory Committee on Genetic Testing (US) (2000). Enhancing the Oversight of Genetic Tests: Recommendations of the SACGT. Available online at www4.od.nih.gov/oba/sacgt/reports/oversight_report.pdf.
357. Secretary's Advisory Committee on Genetics, Health and Society (2006). Coverage and Reimbursement of Genetic Tests and Services. Available online at www4.od.nih.gov/oba/sacghs/reports/CR_report.pdf.
358. Segal, S. and Hill, A. V. (2003). Genetic susceptibility to infectious disease. Trends Microbiol. 11, 445–8.
359. Sharp, R. R., Yudell, M. A. and Wilson, S. H. (2004). Shaping science policy in the age of genomics. Nat. Rev. Genet. 5, 311–16.
360. Singer, P. A. and Daar, A. S. (2001). Harnessing genomics and biotechnology to improve global health equity. Science 294, 2289–90.
361. Soini, S. et al. (2006). The interface between assisted reproductive technologies and genetics: technical, social, ethical and legal issues. Eur. J. Hum. Genet. 14, 588–645.
362. Spink, J. and Geddes, D. (2004). Gene therapy progress and prospects: bringing gene therapy into medical practice: the evolution of international ethics and the regulatory environment. Gene Ther. 11, 1611–16.
363. Stears, R. L., Martinsky, T. and Schena, M. (2003). Trends in microarray analysis. Nat. Med. 9, 140–5.
364. Steinbrook, R. (2006). Egg donation and human embryonic stem-cell research. N. Engl. J. Med. 354, 324–6.
365. Stevenson, M. (2004). Therapeutic potential of RNA interference. N. Engl. J. Med. 351, 1772–7.
366. Strachan, T. and Read, A. (2003). Human Molecular Genetics, 3rd edn. New York: Garland Science.
367. Sudbery, P. (2002). Human Molecular Genetics, 2nd edn. Harlow: Prentice Hall.
368. Sulston, J. and Ferry, G. (2002). The Common Thread. A Story, of Science, Politics, Ethics and the Human Genome. London: Bantam Press, Transworld Publishers.
369. Suther, S. and Goodson, P. (2003). Barriers to the provision of genetic services by primary care physicians: a systematic review of the literature. Genet. Med. 5, 63–5.
370. Suzuki, D. and Knudson, P. (1990). Genethics, revised edn. Cambridge, Mass.: Harvard University Press.
371. Taylor, C. J., Bolton, E. M., Pocock, S., Sharples, L. D., Pedersen, R. A. and Bradley, J. A. (2005). Banking on human embryonic stem cells: estimating the number of donor cell lines needed for HLA matching. Lancet 366, 1991–2.
372. Teare, D. M. and Barrett, J. H. (2005). Genetic linkage studies. Lancet 366, 1036–44.
373. ten Have, H. A. (2001). Genetics and culture: the geneticisation thesis. Med. Health Care Philosoph. 4, 295–304.
374. ten Kate, L. (1998). Editorial. Community Genet. 1, 1–2.
375. ten Kate, L. (2000). Editorial. Community Genet. 3, 1.
376. ten Kate, L. (2005). Community genetics: a bridge between clinical genetics and public health. Community Genet. 8, 7–11.
377. Thomas, J. C., Irwin, D. E., Zuiker, E. S. and Millikan, R. C. (2005). Genomics and the public health code of ethics. Am. J. Public Health 95, 2139–43.
378. Trujillo, E., Davis, C. and Milner, J. (2006). Nutrigenomics, proteomics, metabolomics, and the practice of dietetics. J. Am. Diet. Assoc. 106, 403–13.
379. Tucker, G. (2004). Pharmacogenetics – expectations and reality. BMJ 329, 4–6.
380. Turnpenny, P. and Ellard, S. (2005). Emery's Elements of Medical Genetics, 12th edn. Edinburgh: Churchill Livingstone.
381. Tutton, R. and Corrigan, O. eds. (2004). Genetic Databases: Socio-Ethical Issues in the Collection and Use of DNA. London: Routledge.
382. Tyagi, A. and Morris, J. (2003). Using decision analytic methods to assess the utility of family history tools. Am. J. Prev. Med. 24, 199–207.
383. UK Government (1967). Abortion Act 1967: Elizabeth II. Chapter 87. London: HMSO.
384. UK Government (1977). Patents Act 1977: Elizabeth II. London: HMSO.
385. UK Government (1990). Human Fertilisation and Embryology Act 1990: Elizabeth II. Chapter 37. London: HMSO.
386. UK Government (1998). Human Rights Act 1998: Elizabeth II. Chapter 42. Reprinted May 2001 and September 2006. London: The Stationery Office. Available online at www.opsi.gov.uk/acts/acts1998/19980042.htm.
387. UK Government (1998). Data Protection Act. London: The Stationery Office. Available online at www.opsi.gov.uk/acts/acts1998/19980029.htm.
388. UK Government (2000). The Patents Regulations 2000. London: The Stationery Office. Available online at www.opsi.gov.uk/si/si2000/20002037.htm.
389. UK Government (2001a). Health and Social Care Act. London: The Stationery Office. Available online at www.opsi.gov.uk/acts/acts2001/20010015.htm.
390. UK Government (2001b). Human Reproductive Cloning Act. London: The Stationery Office. Available online at www.legislation.hmso.gov.uk/acts/acts2001/20010023.htm.
391. UK Government (2001c). Human Fertilisation and Embryology (Research Purposes) Regulations 2001. London: The Stationery Office. Available online at www.hmso.gov.uk/si/si2001/20010188.htm.
392. UK Government (2002). Medical Devices Regulations 2002. London: The Stationery Office. Available online at www.opsi.gov.uk/si/si2002/20020618.htm.
393. UK Government (2003) Government Response to the HGC's Report ‘Inside Information Balancing Interests in the Use of Personal Genetic Data’. Available online at www.dh.gov.uk/PublicationsAndStatistics/LettersAndCirculars/DearColleagueLetters/DearColleagueLetters Article/fs/en?CONTENT_ID=4005488&chk=iwH9UG.
394. UK Government (2004a). The Human Fertilisation and Embryology Authority (Disclosure of Donor Information) Regulations 2004. Statutory instrument 2004 no. 1511. Available online at www.opsi.gov.uk/si/si2004/20041511.htm.
395. UK Government (2004b). The Medicines for Human Use (Clinical Trials) Regulations 2004. London: The Stationery Office. Available online at www.uk-legislation.hmso.gov.uk/si/si2004/20041031.htm.
396. UK Government (2004c). Human Tissue Act. London: The Stationery Office. Available online at www.opsi.gov.uk/acts/acts2004/20040030.htm.
397. UK Government (2005a). Human Reproductive Technologies and the Law. Government Response to the Report from the House of Commons Science and Technology Committee. London: The Stationery Office. Available online at www.dh.gov.uk/assetRoot/04/11/78/74/04117874.pdf.
398. UK Government (2005b). Mental Capacity Act. London: The Stationery Office. Available online at www.opsi.gov.uk/acts/acts2005/20050009.htm.
399. UK Government (2005c). Disability Discrimination Act. London: The Stationery Office. Available online at www.opsi.gov.uk/ACTS/acts2005/20050013.htm.
400. UK Government and Association of British Insurers (2005). Concordat andMoratorium on Genetics and Insurance. Available online at www.dh.gov.uk/assetRoot/04/10/60/50/04106050.pdf.
401. UK Patent Office (2003). Inventions Involving Human Embryonic Stem Cells. Available online at www.patent.gov.uk/patent/notices/practice/stemcells.htm.
402. UK Patent Office (2005). Examination Guidelines for Patent Applications Relating to Biotechnological Inventions in the UK Patent Office. Available online at www.patent.gov.uk/patent/reference/biotechguide/index.htm.
403. UK Stem Cell Bank Steering Committee (2005). Code of Practice for the Use of Human Stem Cell Lines – Version 2. Available online at ww.mrc.ac.uk/public-use_of_stem_cell_lines.
404. UK Stem Cell Initiative (2005). Report and Recommendations. Available online at www.advisorybodies.doh.gov.uk/uksci/uksci-reportnov05.pdf.
405. UNESCO (1997). Universal Declaration on the Human Genome and Human Rights. Available online at portal.unesco.org/shs/en/ev.php-URL_ID=1881&URL_DO=DO_TOPIC&URL_SECTION=201.html.
406. UNESCO (2003). International Declaration on Human Genetic Data. Available online at unesdoc. unesco.org/images/0013/001361/136112eb.pdf.
407. UNESCO (2005). International Declaration on Bioethics and Human Rights. Available online at portal.unesco.org/shs/en/file_download.php/46133e1f4691e4c6e57566763d474a4dBioethicsDeclaration_EN.pdf.
408. UNESCO International Bioethics Committee (2000). Report on Confidentiality and Genetic Data. Available online at http://portal.unesco.org/shs/en/file_download.php/48de04a5e6-de8bc4966add86540d6c71Confidentiality_en.pdf.
409. UNESCO International Bioethics Committee (2001). The Use of Embryonic Stem Cells in Therapeutic Research. Available online at portal.unesco.org/shs/en/file_download.php/64b74abda57372bdc22570b42c1718f1 StemCells_en.pdf.
410. UNESCO International Bioethics Committee (2002). Report on Ethics, Intellectual Property and Genomics. Available online at portal.unesco.org/shs/en/file_download.php/0f8d8bed17083342b45db84beef431ac FinalReportIP_en.pdf.
411. UNESCO International Bioethics Committee (2003). Report on Preimplantation Genetic Diagnosis and Germ-Line Intervention. Available online at portal.unesco.org/shs/en/file_download.php/1f3df0049c329b1f8f8e46b6f381cbd1ReportfinalPGD_en.pdf.
412. United Nations General Assembly (2005). United Nations Declaration on Human Cloning. Available online at http://daccessdds.un.org/doc/UNDOC/GEN/No4/493/06/PDF/No449306.pdf?OpenElement.
413. US Congress (1990). Americans with Disabilities Act of 1990. Available online at www.usdoj.gov/crt/ada/pubs/ada.txt.
414. US Congress (1996). Health Insurance Portability and Accountability Act of 1996. Available online at www.cms.hhs.gov/hipaa/hipaa1/content/hipaasta.pdf. Explanatory information is available at www.cms.hhs.gov/hipaa/.
415. US Congress (2002). Standards for Privacy of Individually Identifiable Health Information. Final rule. Available online at www.hhs.gov/ocr/hipaa/privrulepd.pdf.
416. US Equal Employment Opportunities Commission (2001). EEOC Petitions Court to Ban Genetic Testing of Railroad Workers in First EEOC Case Challenging Genetic Discrimination Under Americans with Disabilities Act. Press release available online at www.eeoc.gov/press/2-9-01-c.html.
417. US Equal Employment Opportunities Commission (2002). EEOC and BNSF Settle Genetic Testing Case Under Americans with Disabilities Act. Press release available online at www.eeoc.gov/press/5-8-02.html.
418. US National Bioethics Advisory Commission (1997). Cloning Human Beings Report and Recommendations. Available onling at www.georgetown.edu/research/nrcbl/nbac/pubscloning1/cloning.pdf.
419. US President (2000). Executive Order to Prohibit Discrimination in Federal Employment Based on Genetic Information. Available online at www.genome.gov/10002084.
420. US President (2001). President Bush statement, 9 August 2001. Available at http://www.Whitehouse.gov/news/releases/2001/08/20010809-2.html. Whitehouse fact sheet available at http://www.Whitehouse.gov/news/releases/2001/08/20010809-1.html.
421. US Preventive Services Task Force (2005). Genetic risk assessment and BRCA mutation testing for breast and ovarian cancer susceptibility: recommendation statement. Ann Intern. Med. 143, 355–61.
422. Van Overwalle, G., van Zimmern, E., Ver beure, B. and Matthijs, G. (2006). Models for facilitating access to patents on genetic inventions. Nat Rev. Genet. 7, 143–8.
423. van Rijn, M. J., van Duijn, C. M. and Slooter, A. J. (2005). Impact of generic testing on complex diseases. Eur. J. Epidemiol. 20, 383–8.
424. Veenstra, D. L., Higashi, M. K. and Phillips, K. A. (2000). Assessing the cost-effectiveness of pharmacogenetics. AAPS Pharmsci. 2; article 29. Available online at www.pharmsci.org.
425. Wacholder, S., Rothman, N. and Caporaso, N. (2000). Population stratification in epidemiologic studiesofcommongenetic variantsandcancer: quantification of bias. J.Natl.Cancer Inst. 92, 1151–8.
426. Wacholder, S., Garcia-Closas, M. and Rothman, N. (2002). Study of genes and environmental factors in complex diseases. Lancet 359, 1155–6.
427. Walgren, R. A., Meucci, M. A. and McLeod, H. L. (2005). Pharmacogenomic discovery approaches: will the real genes please stand up? J. Clin. Oncol. 23, 7342–9.
428. Wanless, D. (2002). Securing our Future Health: Taking a Long Term View. Available online at www.hm-treasury.gov.uk/consultations_and_legislation/wanless/consult_wanless_index.cfm.
429. Wanless, D. (2004). Securing Good Health for the Whole Population. Available online at www.hmtreasury.gov.uk/consultations_and_legislation/wanless/consult_wanless03_index.cfm.
430. Warburg, R. J., Wellman, A., Buck, T. B. and Ligler Schoenhard, A. (2003). Patentability and maximum protection of intellectual property in proteomics and genomics. Pharmacogenomics 4, 81–90.
431. Warnock, M. (1984). Report of the Committee of Inquiry into Human Fertilisation and Embryology. London: The Stationery Office.
432. Waters, M. D. and Fostel, J. M. (2004). Toxicogenomics and systems toxicology: aims and prospects. Nat. Rev. Genet. 5, 936–48.
433. Weber, W. W. (1997). Pharmacogenetics. Oxford: Oxford University Press.
434. Webster, A., Martin, P., Lewis, G. and Smart, A. (2004). Integrating pharmacogenetics into society: in search of a model. Nat. Rev. Genet. 5, 663–9.
435. Weeraratna, A. T., Nagel, J. E., de Mello-Coelho, V. and Taub, D. D. (2004). Gene expression profiling: from microarrays to medicine. J. Clin. Immunol. 24, 213–24.
436. Wellcome Trust (2004a). Human Tissue Bill – second reading, 15 January 2004. Available online at www.wellcome.ac.uk/doc_wtd002742.html.
437. Wellcome Trust (2004b). Public Health Sciences: Challenges and Opportunities. Available online at www.wellcome.ac.uk/assets/wtd003191.pdf.
438. Wheeler, J. G., Keavney, B. D., Watkins, H., Collins, R. and Danesh, J. (2005). Four paraoxonase gene polymorphisms in 11212 cases of coronary heart disease and 12786 controls: metaanalysis of 43 studies. Lancet 363, 689–95.
439. Whelan, A. J., Ball, S., Best, L. et al. (2004). Genetic red flags: clues to thinking genetically in primary care practice. Prim. Care 31, 497–508.
440. White, K. L. (1991). Healing the Schism: Epidemiology, Medicine, and the Public's Health. New York: Springer-Verlag.
441. Willett, W. C. (2002). Balancing life-style and genomics research for disease prevention. Science 296, 695–8.
442. Williams, P. and Clow, S. eds. (1999). Genomics Healthcare and Public Policy. London: Office of Health Economics.
443. Wilson, J. M. G. and Jungner, G. (1968). Principles and Practice of Screening for Disease. Public health paper No. 34. Geneva: World Health Organization.
444. Wolf, C. R., Smith, G. and Smith, R. L. (2000). Science, medicine and the future: pharmacogenetics. BMJ 320, 987–90.
445. Wolffe, A. P. and Matzke, M.A. (1999). Epigenetics: regulation through repression. Science 286, 481–5.
446. World Health Organization (1998). Proposed International Guidelines on Ethical Issues in Medical Genetics and Genetic Services. Available online at www.who.int/genomics/publications/en/ethicalguidelines1998.pdf.
447. World Health Organization (2000). Statement of the WHO Expert Consultation on New Developments in Human Genetics. Available online at whqlibdoc.who.int/hq/2000/WHO_HGN_WG_00.3.pdf.
448. World Health Organization (2002). Human Genetic Technologies. Implications for Preventive Health Care. Geneva: World Health Organization.
449. World Health Organization (2003a). Genetic Databases: Assessing the Benefits and the Impact on Human and Patient Rights. Available online at www.law.ed.ac.uk/ahrb/publications/online/whofinalreport.doc.
450. World Health Organization (2003b). Review of Ethical Issues in Medical Genetics. Available online at www.who.int/genomics/publications/en/ethical_issuesin_medgenetics%20report.pdf.
451. World Health Organization (2005). Genetics, Genomics and Patenting DNA. Review of Potential Implications for Health in Developing Countries. Available online at www.who.int/genomics/patentingDNA/en/index.html.
452. World Health Organization Advisory Committee on Health Research (2002). Genomics and World Health. Geneva: World Health Organization.
453. World Medical Association (1964; latest update 2004). Ethical Principles for Medical Research Involving Human Subjects (WMA Declaration of Helsinki). Available online at www.wma.net/e/policy/b3.htm.
454. World Medical Association (2002). Declaration on Ethical Considerations Regarding Health Databases. Available online at www.wma.net/e/policy/d1.htm.
455. World Medical Association (2005). Statement on Genetics and Medicine. Available online at www.wma.net/e/policy/g11.htm.
456. World Trade Organisation (1994). Agreement on trade-related aspects of intellectual property. Available online at http://www.wto.org/english/docs_e/legal_e/27-trips.pdf.
457. Yang, Q., Khoury, M.J., Botto, L., Friedman, J.M. and Flanders, W.D. (2003). Improving the prediction of complex diseases by testing for multiple disease susceptibility genes. Am. J. Hum. Genet. 72, 636–49. (Erratum 74, 372).
458. Yang, Q., Khoury, M. J., Botto, L., Friedman, J. M. and Flanders, W. D. (2005). Revisiting the clinical validity of multiplex genetic testing in complex diseases: reply to Janssens et al. Am. J. Hum. Genet. 74, 588–9.
459. Yoon, P., Scheuner, M. T., Peterson-Oehlke, K. L., Gwinn, M., Faucett, A. and Khoury, M. J. (2002). Can family history be used as a tool for public health and preventive medicine? Genet. Med. 4, 304–10.
460. Yoon, P., Scheuner, M. T. and Khoury, M. J. (2003). Research priorities for evaluating family history in the prevention of common chronic diseases. Am. J. Prev. Med. 24, 128–35.
461. Zerhouni, E. A. (2005). Translational and clinical science – time for a new vision. N. Engl. J. Med. 353, 1621–3.
462. Zimmern, R. L. (2001a). Review. Community Genet. 4, 60.
463. Zimmern, R. L. (2001b). What is genetic information: whose hands on your genes? Genet. Law Monitor 1, 9–13.
464. Zimmern, R. L. (2003). Public health genetics. In Encyclopedia of the Human Genome, ed. D. N. Cooper. London: Macmillan Publishers Ltd., Nature Publishing Group.
465. Zimmern, R. L. and Cook, C. (2000). Genetics and Health. Policy issues for genetic science and their implications for health services. London: The Stationery Office. Available online at www.archive.official-documents.co.uk/document/nuffield/policyf/genetics.htm.
466. Zimmern, R. L. and Stewart, A. (2006). Genetics in disease prevention. In The Oxford Handbook of Public Health Practice, eds. D. Pencheon et al. Oxford: Oxford University Press.