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Further reading

Published online by Cambridge University Press:  19 January 2010

Alison Stewart
Affiliation:
Public Health Genetics Unit, Cambridge
Philippa Brice
Affiliation:
Public Health Genetics Unit, Cambridge
Hilary Burton
Affiliation:
Public Health Genetics Unit, Cambridge
Paul Pharoah
Affiliation:
University of Cambridge
Simon Sanderson
Affiliation:
Public Health Genetics Unit, Cambridge
Ron Zimmern
Affiliation:
Public Health Genetics Unit, Cambridge
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Summary

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Type
Chapter
Information
Genetics, Health Care and Public Policy
An Introduction to Public Health Genetics
, pp. 291 - 322
Publisher: Cambridge University Press
Print publication year: 2007

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References

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.
Academy of Medical Sciences (2003). Strengthening Clinical Research. Available online at www.acmedsci.ac.uk/images/project/Report.pdf.
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.
Acheson, L. S. and Wiesner, G. L. (2004a). Current and future applications of genetics in primary care medicine. Prim. Care 31, 449–60.CrossRefGoogle Scholar
Acheson, L. S. and Wiesner, G. L. eds. (2004b). Genetics for Primary Care Clinicians. Prim. Care 31.Google Scholar
Aderem, A. (2005). Systems biology: its practice and challenges. Cell 121, 511–13.CrossRefGoogle ScholarPubMed
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.
Andrews, L. B. (2002). Genes and patent policy: rethinking intellectual property rights. Nat. Rev. Genet. 3, 803–8.CrossRefGoogle ScholarPubMed
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.Google Scholar
Article 29 Data 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.
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.
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.
Banks, E. and Meade, T. (2002). The study of genes and environmental factors in common disease. Lancet 359, 1156–7.CrossRefGoogle Scholar
Banks, R. E., Dunn, M. J., Hochstrasses, D. F.et al. (2000). Proteomics: new perspectives, new biomedical opportunities. Lancet 356, 1749–56.CrossRefGoogle ScholarPubMed
Bayat, A. (2002). Bioinformatics. BMJ 324, 1018–22.CrossRefGoogle ScholarPubMed
Bell, J. (1998). The new genetics in clinical practice. BMJ 316, 618–20.CrossRefGoogle ScholarPubMed
Bell, J. (2004). Predicting disease using genomics. Nature 429, 453–6.CrossRefGoogle ScholarPubMed
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.Google ScholarPubMed
Bioscience Innovation and Growth Team (2003). Bioscience 2015. Available online at www.bioindustry.org/bigtreport/.
Bostyn, S. J. R. (2003). The prodigal son: the relationship between patent law and health care. Med. Law Rev. 11, 67–120.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.Google ScholarPubMed
Brice, P. (2004). Array of hope. Health Serv. J. 114, 24–5.Google ScholarPubMed
Brice, P. and Sanderson, S. (2006a). Genetics, health and medicine. Pharm. J. 277, 53–56.Google Scholar
Brice, P. and Sanderson, S. (2006b). Use for genetics in pharmacy. Pharm. J. 277, 109–12.Google Scholar
Brice, P. and Sanderson, S. (2006c). Pharmacogenetics: what are the ethical and economic implications?Pharm. J. 277, 113–14.Google Scholar
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.
British Medical Association (1998). Human Genetics: Choice and Responsibility. Oxford: Oxford University Press.
British Medical Association (1999). Confidentiality and Disclosure of Health Information. Available online at www.bma.org.uk/ap.nsf/Content/Confidentialitydisclosure.
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.
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.
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.CrossRefGoogle ScholarPubMed
Brock, D. (2002). Human cloning and our sense of self. Science 296, 314–16.CrossRefGoogle ScholarPubMed
Buchanan, A. E., Brock, D. W., Daniels, N. and Wikler, D. (2000). Chance to Choice: Genetics and Justice. Cambridge: Cambridge University Press.CrossRefGoogle Scholar
Burke, W. (2002). Genetic testing. N. Engl. J. Med. 347, 1867–75.CrossRefGoogle ScholarPubMed
Burke, W. (2003). Genomic medicine: genomics as a probe for disease biology. N. Engl. J. Med. 349, 969–74.CrossRefGoogle Scholar
Burke, W. (2004). Genetic testing in primary care. Annu. Rev. Genomics Hum. Genet. 5, 1–14.CrossRefGoogle ScholarPubMed
Burke, W. (2005). Contributions of public health to genetics education for health professionals. Health Educ. Behav. 32, 668–75.CrossRefGoogle Scholar
Burke, W. and Emery, J. (2002). Genetics education for primary-care providers. Nat. Rev. Genet. 3, 561–6.CrossRefGoogle ScholarPubMed
Burke, W. and Zimmern, R. L. (2004). Ensuring the appropriate use of genetic tests. Nat. Rev. Genet. 5, 955–8.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
Burt, R. and Neklason, D. W. (2005). Genetic testing for inherited colon cancer. Gastroenterology 128, 1696–716.CrossRefGoogle ScholarPubMed
Burton, H. (2003). Addressing Genetics, Delivering Health. Available online at www.phgu.org.uk/addressing_genetics.shtml.
Burton, H. (2005). Metabolic Pathways. Networks of Care. Cambridge: Public Health Genetics Unit. Available online at www.phgu.org.uk.Google Scholar
Burton, P., McCarthy, M. and Elliott, P. (2002). The study of genes and environmental factors in common disease. Lancet 359, 1155.CrossRefGoogle Scholar
Burton, P. R., Tobin, M. D. and Hopper, J. L. (2005). Key concepts in genetic epidemiology. Lancet 366, 941–51.CrossRefGoogle ScholarPubMed
Calvo, K. R., Liotta, L. A. and Petricoin, E. F. (2005). Clinical proteomics: from biomarker discovery and cell signaling profiles to individualized personal therapy. Biosci. Rep. 25, 107–25.CrossRefGoogle ScholarPubMed
Cambon-Thomsen, A. (2004). The social and ethical issues of post-genomic human biobanks. Nat. Rev. Genet. 5, 866–73.CrossRefGoogle ScholarPubMed
Campbell, H. and Rudan, I. (2002). Interpretation of genetic association studies in complex disease. Pharmacogenomics J. 2, 349–60.CrossRefGoogle ScholarPubMed
Cardon, L. R. and Abecasis, G. R. (2003). Using haplotype blocks to map human complex trait loci. Trends Genet. 19, 135–40.CrossRefGoogle ScholarPubMed
Cavazzana-Calvo, M., Thrasher, A. and Mavilio, F. (2004). The future of gene therapy. Nature 427, 779–81.CrossRefGoogle ScholarPubMed
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.
Chadwick, R., Levitt, M. and Shickle, D. (1997). The Right to Know and the Right Not to Know. Aldershot: Avebury.Google Scholar
Christianson, A. and Modell, B. (2004). Medical genetics in developing countries. Annu. Rev. Genomics Hum. Genet. 5, 219–65.CrossRefGoogle ScholarPubMed
Chung, D. C. and Rustgi, A. K. (2003). The hereditary nonpolyposis colorectal cancer syndrome: genetics and clinical implications. Ann. Intern. Med. 138, 560–70.CrossRefGoogle ScholarPubMed
Clarke, A., ed. (1998). The Genetic Testing of Children. Oxford: Bios Scientific Publishers.Google Scholar
Clayton, D. and McKeigue, P. M. (2001). Epidemiological methods for studying genes and environmental factors in complex diseases. Lancet 358, 1356–60.CrossRefGoogle ScholarPubMed
Clayton, E. W. (2003). Genomic medicine: ethical, legal, and social implications of genomic medicine. N. Engl. J. Med. 349, 562–9.CrossRefGoogle ScholarPubMed
Clinical Genetics Society (1994). The Genetic Testing of Children. Available online at www.bshg.org.uk/documents/official_docs/testchil.htm.
Collins, F. S. (1999). Shattuck lecture – medical and societal consequences of the human genome project. N. Engl. J. Med. 341, 28–37.CrossRefGoogle ScholarPubMed
Collins, F. S. (2003). A vision for the future of genomics research. Nature 422, 835–47.CrossRefGoogle ScholarPubMed
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.
Consumers' Association and GeneWatch UK (2002). Genetic Testing in the High Street. Available online at www.genewatch.org/HumanGen/tests/Letters/GeneWatch.doc.
Cooke, G. S. and Hill, A. V. (2001). Genetics of susceptibility to human infectious disease. Nat. Rev. Genet. 2, 967–77.CrossRefGoogle ScholarPubMed
Cordell, H. J. and Clayton, D. G. (2005). Genetic association studies. Lancet 366, 1121–31.CrossRefGoogle ScholarPubMed
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.
Costa, L. G. (2000). The emerging field of ecogenetics. Neurotoxicology 21, 85–9.Google ScholarPubMed
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.
Council of Europe (1997). Convention on Human Rights and Biomedicine. Available online at conventions.coe.int/treaty/en/treaties/html/164.htm.
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.
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.
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
Department of Health (1993). Population Needs and Genetic Services: An Outline Guide. London: HMSO.
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.
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.
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/PublicationsPolicyAndGuidanceArticle/fs/en?CONTENT_ID=4118936&chk=2yGYxK.
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.
Department of Health (2001). The Expert Patient: A New Approach to Chronic Disease Management in the 21stCentury. Available online at www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidance/PublicationsPolicyAndGuidanceArticle/fs/en?CONTENT_ID=4006801&chk=UQCoh9.
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.
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.
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.
Department of Health (2003b). Confidentiality. NHS Code of Practice. Available online at www.dh.gov.uk/assetRoot/04/06/92/54/04069254.pdf.
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.
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.
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.
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.
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.
Department of Health (2004e). Modernising Pathology Services. Available online at www.dh.gov.uk/assetRoot/04/07/31/12/04073112.pdf.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Department of Health and HM Government (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.
Donnai, D. (2002). Genetics services. Clin. Genet. 61, 1–6.CrossRefGoogle Scholar
Donnai, D. and Elles, R. (2001). Integrated regional genetics services: current and future provision. BMJ 322, 1048–52.CrossRefGoogle ScholarPubMed
Downward, J. (2004). RNA interference. BMJ 328, 1245–8.CrossRefGoogle ScholarPubMed
Emens, L. (2005). Trastuzumab: targeted therapy for the management of HER-2/neu over-expressing metastatic breast cancer. Am. J. Ther. 12, 243–53.Google Scholar
Engel, L. S., Taioli, E., Pfeiffer, R.et al. (2002). Pooled analysis and meta-analysis of glutathione S-transferase M1 and bladder cancer: a HuGE review. Am. J. Epidemiol. 156, 95–109 [Erratum in: Am. J. Epidemiol. (2002) 156, 492.]CrossRefGoogle ScholarPubMed
Equalities Review (2005). Interim Report for Consultation. Available online at www.theequalitiesreview.org.uk/Sites/www.theequalitiesreview.org.uk/publications/interim_report.aspx.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
European Patent Office (1973, with subsequent amendments). European Patent Convention. Available online at www.european-patent-office.org/legal/epc/.
European Society of Human Genetics (2003). International coverage of all aspects of human genetics. Eur. J. Hum. Genet. 11, suppl. 2.
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
Farrall, M. and Morris, A. P. (2005). Gearing up for genome-wide gene-association studies. Hum. Mol. Genet. 14 (Review Issue 2), R157–62.CrossRefGoogle ScholarPubMed
Fears, R., Weatherall, D. and Poste, G. (1999). The impact of genetics on medical education and training. Br. Med. Bull. 55, 460–70.CrossRefGoogle ScholarPubMed
Feinberg, A. P., Ohlsson, R. and Henikoff, S. (2006). The epigenetic progenitor origin of human cancer. Nat. Rev. Genet. 7, 21–3.CrossRefGoogle ScholarPubMed
Fineman, R. (1999). Qualifications of public health geneticists?Community Genet. 2, 113–14.Google ScholarPubMed
Firth, H. and Hurst, J. (2005). Oxford Desk Reference – Clinical Genetics. Oxford: Oxford University Press.Google Scholar
Food and Drug Administration (US) (2005). Guidance for Industry. Pharmacogenomic Data Submissions. Available online at www.fda.gov/cber/gdlns/pharmdtasub.htm.
Fox Keller, E. (2000). The Century of the Gene. Cambridge, Mass.: Harvard University Press.Google Scholar
Gelehrter, T. D., Collins, F. and Ginsburg, D. (1998). The Principles of Medical Genetics, 2nd edn. New York: Lippincott Williams and Wilkins.Google Scholar
General Medical Council (2002). Research: The Role and Responsibilities of Doctors. Available online at www.gmc-uk.org/guidance/library/research.asp.
General Medical Council (2004). Confidentiality: Protecting and Providing Information. Available online at www.gmc-uk.org/guidance/library/confidentiality.asp.
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.
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.CrossRefGoogle ScholarPubMed
Grace, J., El Toukhy, T. and Braude, P. (2004) Pre-implantation genetic testing. Br. J. Obstet. Gynaecol. 111, 1165–73.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
Guttmacher, A. E. and Collins, F. S. (2002). Genomic medicine – a primer. N. Engl. J. Med. 347, 1512–20.CrossRefGoogle ScholarPubMed
Guttmacher, A. E. and Collins, F. S. (2005). Realizing the promise of genomics in biomedical research. J. Am. Med. Assoc. 294, 1399–402.CrossRefGoogle ScholarPubMed
Gwinn, M. and Khoury, M. J. (2002). Research priorities for the public health sciences in the post-genomic era. Genet. Med. 4, 410–11.CrossRefGoogle Scholar
Hadfield, S. G. and Humphries, S. E. (2005). Implementation of cascade testing for the detection of familial hypercholesterolaemia. Curr. Opin. Lipidol. 16, 428–33.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Harris, J. (2000). Is there a coherent social conception of disability?J. Med. Ethics 26, 95–100.CrossRefGoogle Scholar
Harris, J. and Holm, S., eds. (1998). The Future of Human Reproduction: Ethics, Choice and Regulation. Oxford: Clarendon Press.Google Scholar
Hattersley, A. T. and McCarthy, M. I. (2005). What makes a good genetic association study?Lancet 366, 1315–23.CrossRefGoogle ScholarPubMed
Healthcare Industry Task Force (2004). Better Health Through Partnership. Available online at www.dh.gov.uk/assetRoot/04/09/52/23/04095223.pdf.
Hedgecoe, A. (2001). Ethical boundary work: geneticisation, philosophy and the social sciences. Med. Health Care Philosoph. 4, 305–9.CrossRefGoogle Scholar
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.Google Scholar
Hinxton Group (2006). An International Consortium on Stem Cells, Ethics and Law. Consensus Statement. Available online at www.hopkinsmedicine.org/bioethics/finalsc.doc.
Hirschhorn, J. N. and Daly, M. J. (2005). Genome-wide association studies for common diseases and complex traits. Nat. Rev. Genet. 6, 95–108.CrossRefGoogle ScholarPubMed
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.
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.CrossRefGoogle Scholar
Holtzman, N. A. (1989). Proceed with Caution: Predicting Genetic Risks in the Recombinant DNA Era. Baltimore: Johns Hopkins University Press.Google Scholar
Holtzman, N. A. (2006). What role for public health in genetics and vice versa?Community Genet. 9, 8–20.Google ScholarPubMed
Holtzman, N. A. and Marteau, T. M. (2000). Will genetics revolutionize medicine?N. Engl. J. Med. 343, 141–4.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
Hopper, J. L., Bishop, D. T. and Easton, D. F. (2005). Population based family studies in genetic epidemiology. Lancet 366, 1397–406.CrossRefGoogle ScholarPubMed
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.
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.
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.
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.
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.
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.
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.
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.
Hubbard, R. and Wald, E. (1997). Exploding the Gene Myth. Boston: Beacon Press.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.
Human Fertilisation and Embryology Authority (2003b). Sex Selection: Report Summary. Available online at www.hfea.gov.uk/AboutHFEA/Consultations/Final%20sex%20selection%20summary.pdf.
Human Fertilisation and Embryology Authority (2004a). Report of the Preimplantation Tissue Typing Policy Review. Available online at www.hfea.gov.uk/AboutHFEA/HFEAPolicy/Preimplantationtissuetyping.
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.
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.
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.
Human Genetics Advisory Commission (1999). The Implications of Genetic Testing for Employment. Available online at www.advisorybodies.doh.gov.uk/hgac/papers/paperg1.htm.
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%20 Reproduction%20 Science%20and%20Medicine%20Report.pdf.
Human Genetics Commission (2001). Public Attitudes to Human Genetic Information. Available online at www.hgc.gov.uk/UploadDocs/DocPub/Document/morigeneticattitudes.pdf.
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.
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.
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.
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.
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.
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.
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Hunter, D. J. (2005). Gene–environment interactions in human disease. Nat. Rev. Genet. 6, 287–98.CrossRefGoogle Scholar
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.
Information Commissioner (2005a). Employment practices code. Available online at www.ico.gov.uk/upload/documents/library/data_protection/practical_application/ICO_EmpPracCode.pdf.
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.
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.CrossRefGoogle ScholarPubMed
Jackson, E. (2001). Regulating Reproduction: Law, Technology and Autonomy. Oxford: Hart Publishing.Google Scholar
Janssens, A. C., Pardo, M. C., Steyerberg, E. W. and Duijn, C. M. (2005). Revisiting the clinical validity of multiplex genetic testing in complex diseases. Am. J. Hum. Genet. 74, 585–8.CrossRefGoogle Scholar
Joint Committee on Medical Genetics (2006). Consent and Confidentiality. London: British Society of Human Genetics, Royal College of Pathologists, Royal College of Physicians.
Jones, M. and Salter, B. (2003). The governance of human genetics: policy discourse and constructions of public trust. New Genet. Soc. 22, 21–41.CrossRefGoogle ScholarPubMed
Juengst, E. T. (1995). ‘Prevention’ and the goals of genetic medicine. Hum. Gene Ther. 6, 1595–605.CrossRefGoogle ScholarPubMed
Kanehisa, M. and Bork, P. (2003). Bioinformatics in the post-sequence era. Nat. Genet. 33, 305–10.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Kerr, A. and Shakespeare, T. (1999). Genetic Politics: From Eugenics to Genome (Issues in Social Policy). Cheltenham: New Clarion Press.Google Scholar
Kevles, D. J. (1995). In the Name of Eugenics: Genetics and the Uses of Human Heredity. Cambridge, Mass.: Harvard University Press.Google Scholar
Khoury, M. J. (1996). From genes to public health: application of genetics in disease prevention. Am. J. Public Health. 86, 1717–22.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
Khoury, M. J. (2004). The case for a global human genome epidemiology initiative. Nat. Genet. 36, 1027–8.CrossRefGoogle ScholarPubMed
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.Google ScholarPubMed
Khoury, M. J., Burke, W. and Thomson, E. J., eds. (2000). Genetics and Public Health in the 21st Century. New York: Oxford University Press.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
Khoury, M. J., Little, J. and Burke, W. eds. (2004a). Human Genome Epidemiology. Oxford: Oxford University Press.Google Scholar
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.Google Scholar
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
King, R. A., Rotter, J. I. and Motulsky, A. G. (2002). The Genetic Basis of Common Diseases, 2nd edn. New York: Oxford University Press.Google Scholar
Kirkman, M. (2005). Public health and the challenge of genomics. Aust. N. Z. J. Public Health 29, 163–5.CrossRefGoogle ScholarPubMed
Knoppers, B. M. and Fecteau, C. (2003). Human genomic databases: a global public good?Eur. J. Health Law 10, 27–41.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Krause, D. E. and Etten, R. A. (2005). Tyrosine kinases as targets for cancer therapy. N. Engl. J. Med. 353, 172–87.CrossRefGoogle ScholarPubMed
Kroese, M., Zimmern, R. and Sanderson, S. (2004). Genetic tests and their evaluation: can we answer the key questions?Genet. Med. 6, 475–80.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Lambert, D. (2003). Lambert Review of Business–University Collaboration. Available online at www.hm-treasury.gov.uk/media/EA556/lambert_review_final_450.pdf.
Last, J. M. ed. (2001). A Dictionary of Epidemiology, 4th edn. New York: Oxford University Press.Google Scholar
Laurie, G. (2002). Genetic Privacy: A Challenge to Medico-Legal Norms. Cambridge: Cambridge University Press.CrossRefGoogle Scholar
Lee, R. G. and Morgan, D. (2001). Human Fertilisation and Embryology: Regulating the Reproductive Revolution. London: Blackstone Press.Google Scholar
Lenaghan, J. (1998). Brave New NHS: The Impact of the New Genetics on the Health Service. London: Institute of Public Policy Research.Google Scholar
Lerman, C. and Shields, A. E. (2004). Genetic testing for cancer susceptibility: the promise and the pitfalls. Nat. Rev. Cancer 4, 235–41.CrossRefGoogle ScholarPubMed
Lewontin, R. C., Rose, S. and Kamin, L. (1984). Not in our Genes. New York: Pantheon Books.Google Scholar
Liddell, K. and Hall, A. (2005). Beyond Bristol and Alder Hey: the future regulation of human tissue. Med. Law Rev. 13, 137–69.CrossRefGoogle Scholar
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/.CrossRefGoogle Scholar
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.CrossRefGoogle Scholar
Little, J. and Khoury, M. J. (2003). Mendelian randomisation: a new spin or real progress?Lancet 362, 930–1.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Little, J., Sharp, L., Khoury, M. J., Bradley, L. and Gwinn, M. (2005). The epidemiologic approach to pharmacogenomics. Am. J. Pharmacogenomics 5, 1–20.CrossRefGoogle ScholarPubMed
Lockwood, M. (2001). The moral status of the human embryo. Hum. Fertil. 4, 267–9.CrossRefGoogle ScholarPubMed
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.
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.Google Scholar
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.Google Scholar
Lucassen, A., Parker, M. and Wheeler, R. (2006). Implications of data protection legislation for family history. BMJ 332, 299–301.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Maier, L. (2002). Genetic and exposure risks for chronic beryllium disease. Clin. Chest Med. 23, 827–39.CrossRefGoogle ScholarPubMed
Marteau, T. M. and Lerman, C. (2001). Genetic risk and behavioural change. BMJ 322, 1056–9.CrossRefGoogle ScholarPubMed
Marteau, T. M. and Richards, M. eds. (1999). The Troubled Helix: Social and Psychological Implications of the New Human Genetics. Cambridge: Cambridge University Press.Google Scholar
Martin, N. G., Eaves, L. J. and Fulker, D. W. (1978). The power of the classical twin study. Heredity 40, 97–116.CrossRefGoogle ScholarPubMed
Martinez Arias, A. and Stewart, A. (2002). Molecular Principles of Animal Development. Oxford: Oxford University Press.Google Scholar
Mason, K. and Laurie, G. (2006). Mason and McCall Smith's Law and Medical Ethics. Oxford: Oxford University Press.Google Scholar
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.CrossRefGoogle ScholarPubMed
McCabe, L. L. and McCabe, E. R. (2004). Genetic screening: carriers and affected individuals. Annu. Rev. Genomics Hum. Genet. 5, 57–69.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle Scholar
McGlennan, T. (2001). Insurance and Genetic Information. Association of British Insurers Research Report.
McHale, J. (2004). Regulating genetic databases: some legal and ethical issues. Med. Law Rev. 12, 70–96.CrossRefGoogle Scholar
McKusick, V. A. (1998). Mendelian Inheritance in Man, 12th edn. Baltimore: Johns Hopkins University Press.Google Scholar
McVean, G., Spencer, C. C. A. and Chaix, R. (2005). Perspectives on human genetic variation from the HapMap project. PloS Genetics 1: e54.CrossRefGoogle ScholarPubMed
Medical Research Council (undated). Stem Cell Therapy. Available online at www.mrc.ac.uk/pdf_stem_cells.pdf.
Medical Research Council (2000, with update in 2003). Personal Information in Medical Research. Available online at www.mrc.ac.uk/pdf-pimr.pdf.
Melzer, D. and Zimmern, R. (2002). Genetics and medicalisation. BMJ 321, 863–4.CrossRefGoogle Scholar
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.Google Scholar
Merikangas, K. R. and Risch, N. (2003). Genomic priorities and public health. Science 302, 599–601.CrossRefGoogle ScholarPubMed
Meyer, U. A. (2004). Pharmacogenetics – five decades of therapeutic lessons from genetic diversity. Nat. Rev. Genet. 5, 669–76.CrossRefGoogle ScholarPubMed
Modell, B. and Kuliev, A. (1998). The history of community genetics: the contribution of the haemoglobin disorders. Community Genet. 1, 3–12.Google ScholarPubMed
Mount, D. W. and Pandey, R. (2005). Using bioinformatics and genome analysis for new therapeutic interventions. Mol. Cancer Ther. 4, 1636–43.CrossRefGoogle ScholarPubMed
Mulkay, M. (1997). The Embryo Research Debate: Science and the Politics of Reproduction. Cambridge: Cambridge University Press.CrossRefGoogle Scholar
Muller, M. and Kersten, S. (2003). Nutrigenomics: goals and strategies. Nat. Rev. Genet. 4, 315–22.CrossRefGoogle ScholarPubMed
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. Rothstein, M. A., pp. 60–73. New Haven: Yale University Press.Google Scholar
Narod, S. A. and Offit, K. (2005). Prevention and management of hereditary breast cancer. J. Clin. Oncol. 23, 1656–63.CrossRefGoogle ScholarPubMed
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.
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.
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.CrossRefGoogle ScholarPubMed
Nelkin, D. and Lindee, M. S. (1995). The DNA Mystique: The Gene as a Cultural Icon. New York: W. H. Freeman and Co.Google Scholar
NHS Central Research and Development Committee (1995a). Genetics of Common Disease. London: Department of Health.
NHS Central Research and Development Committee (1995b). Report of the Genetics Research Advisory Group. London: Department of Health.
Nicholson, R. (2004). Another threat to research in the United Kingdom. BMJ 328, 1212–13.CrossRefGoogle ScholarPubMed
Nowlan, W. (2002). A rational view of insurance and genetic information. Science 297, 195–6.CrossRefGoogle Scholar
Nuffield Council on Bioethics (1998). Mental Disorders and Genetics. London: Nuffield Council on Bioethics. Available online at www.nuffieldbioethics.org/go/ourwork/mentaldisorders/introduction.
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.
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.
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.
Nuffield Council on Bioethics (2003). Pharmacogenetics: Ethical Issues. Available online at www.nuffieldbioethics.org/go/ourwork/pharmacogenetics/introduction.
O'Connor, T. P. and Crystal, R. G. (2006). Genetic medicines: treatment strategies for hereditary disorders. Nat. Rev. Genet. 7, 261–76.CrossRefGoogle ScholarPubMed
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.
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.
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.
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.
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.
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.
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.CrossRefGoogle ScholarPubMed
Palmer, L. J. and Cardon, L. R. (2005). Shaking the tree: mapping complex disease genes with linkage disequilibrium. Lancet 366, 1223–34.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Parliamentary Office of Science and Technology (2003a). Medical Self-Test Kits. Postnote number 194. Available online at www.parliament.uk/post/pn194.pdf.
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.
Parliamentary Office of Science and Technology (2004a). NHS Genetic Testing. Postnote number 227. Available online at www.parliament.uk/documents/upload/POSTpn227.pdf.
Parliamentary Office of Science and Technology (2004b). Regulating Stem Cell Therapies. Postnote number 221. Available online at www.parliament.uk/documents/upload/POSTpn221.pdf.
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.
Parliamentary Office of Science and Technology (2005b). Gene Therapy. Postnote number 240. Available online at www.parliament.uk/documents/upload/POSTpn240.pdf.
Parry, B. (2004). Trading the Genome: Investigating the Commodification of Bio-Information. New York: Columbia University Press.CrossRefGoogle Scholar
Patrizio, P., Mastroianni, A. C. and Mastroianni, L. (2001). Disclosure to children conceived with donor gametes should be optional. Hum Reprod. 16, 2036–8.CrossRefGoogle ScholarPubMed
Patterson, S. D. and Aebersold, R. H. (2003). Proteomics: the first decade and beyond. Nat. Genet. 33, 311–23.CrossRefGoogle ScholarPubMed
Pencheon, D., Guest, C., Melzer, D. and Gray, M. eds. (2006). The Oxford Handbook of Public Health Practice. Oxford: Oxford University Press.CrossRefGoogle Scholar
Pennisi, E. (2004). Searching for the genome's second code. Science 306, 632–5.CrossRefGoogle ScholarPubMed
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. Bennett, B. and Tomossy, G. F., pp. 151–67. New York: Springer.Google Scholar
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.CrossRefGoogle Scholar
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.Google ScholarPubMed
Pollock, A., McNally, N. and Kerrison, S. (2006). Best research. BMJ 332, 247–8.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Qureshi, N., Modell, B. and Modell, M. (2004). Timeline: raising the profile of genetics in primary care. Nat. Rev. Genet. 5, 783–90.CrossRefGoogle ScholarPubMed
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.
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.
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.
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.
R (on the application of Quintavalle) v Secretary of State for Health (2002) EWCA Civ 29. Appeal Court judgment.
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.
Reindal, S. M. (2000). Disability, gene therapy and eugenics – a challenge to John Harris. J. Med. Ethics 26, 89–94.CrossRefGoogle ScholarPubMed
Richards, M. P. M. (1996). Lay and professional knowledge of genetics and inheritance. Public Underst. Sci. 5, 217–30.CrossRefGoogle Scholar
Richards, M. P. M. (1997). It runs in the family: lay knowledge about inheritance. In Culture, Kinship and Genes, ed. Clark, A., pp. 175–94. Basingstoke: Macmillan Publishers.CrossRefGoogle Scholar
Richards, M. (2001). How distinctive is genetic information?Stud. Hist. Phil. Biol. & Biomed. Sci. 32, 663–87.CrossRefGoogle Scholar
Richmond, M. (1999). Human Genomics: Prospects for Health Care and Public Policy. London: University College London School of Public Policy.Google Scholar
Ridley, M. (1999). Genome: The Autobiography of a Species in 23 Chapters. New York: HarperCollins.Google Scholar
Ridley, M. (2003). Nature Via Nurture. Genes, Experience and What Makes us Human. London: Fourth Estate.Google Scholar
Risch, N., Burchard, E., Ziv, E. and Tang, H. (2002). Categorisation of humans in biomedical research: genes, race and disease. Genome Biol. 3: comment2007. Epub 2002 Jul 1.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
Rose, G. (1985). Sick individuals and sick populations. Int. J. Epidemiol. 14, 32–8.CrossRefGoogle ScholarPubMed
Rose, P. and Lucassen, A. (1999). Practical Genetics for Primary Care. Oxford: Oxford University Press.Google Scholar
Roses, A. D. (2002). Genome-based pharmacogenetics and the pharmaceutical industry. Nat. Rev. Drug Discov. 1, 541–9.CrossRefGoogle ScholarPubMed
Rothman, K. J. (2002). Epidemiology: An Introduction. Oxford: Oxford University Press.Google Scholar
Rothman, K. J. and Greenland, S., eds. (1998). Modern Epidemiology, 2nd edn. Baltimore: Lippincott Williams and Wilkins.Google Scholar
Royal College of Physicians (1996). Clinical Genetics into the Twenty-First Century. London: Royal College of Physicians.
Royal College of Physicians (1998a). Clinical Genetic Services: Activity, Outcome, Effectiveness and Quality. London: Royal College of Physicians.
Royal College of Physicians (1998b). Retention of Medical Records with Particular Reference to Medical Genetics. London: Royal College of Physicians.
Royal College of Physicians (1998c). Commissioning Clinical Genetic Services. London: Royal College of Physicians.
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.
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.
Royal Society, The (1998). Whither Cloning? Available online at www.royalsoc.ac.uk/displaypagedoc.asp?id=11525.
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.
Royal Society, The (2003). Stem Cell Research and Therapeutic Cloning: An Update. Available online at www.royalsoc.ac.uk/displaypagedoc.asp?id=11474.
Royal Society, The (2005). Personalised Medicine: Hopes and Realities. Available online at www.royalsoc.ac.uk/document.asp?tip=0&id=3780.
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.
Sadee, W. and Dai, Z. (2005). Pharmacogenetics/genomics and personalized medicine. Hum. Mol. Genet. 14 Review issue 2, R207–14.CrossRefGoogle ScholarPubMed
Sakar, S. (1998). Genetics and Reductionism: a Primer. Cambridge: Cambridge University Press.CrossRefGoogle Scholar
Salanti, G., Sanderson, S. and Higgins, J. P. (2005). Obstacles and opportunities in meta-analysis of genetic association studies. Genet. Med. 7, 13–20.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle Scholar
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.CrossRefGoogle Scholar
Sankar, P. (2003). Genetic privacy. Annu. Rev. Med. 54, 393–407.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
Schmitz, D. and Wiesing, U. (2006). Just a family medical history?BMJ 332, 297–9.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
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.
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.
Segal, S. and Hill, A. V. (2003). Genetic susceptibility to infectious disease. Trends Microbiol. 11, 445–8.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Singer, P. A. and Daar, A. S. (2001). Harnessing genomics and biotechnology to improve global health equity. Science 294, 2289–90.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Stears, R. L., Martinsky, T. and Schena, M. (2003). Trends in microarray analysis. Nat. Med. 9, 140–5.CrossRefGoogle ScholarPubMed
Steinbrook, R. (2006). Egg donation and human embryonic stem-cell research. N. Engl. J. Med. 354, 324–6.CrossRefGoogle ScholarPubMed
Stevenson, M. (2004). Therapeutic potential of RNA interference. N. Engl. J. Med. 351, 1772–7.CrossRefGoogle ScholarPubMed
Strachan, T. and Read, A. (2003). Human Molecular Genetics, 3rd edn. New York: Garland Science.Google Scholar
Sudbery, P. (2002). Human Molecular Genetics, 2nd edn. Harlow: Prentice Hall.Google Scholar
Sulston, J. and Ferry, G. (2002). The Common Thread. A Story, of Science, Politics, Ethics and the Human Genome. London: Bantam Press, Transworld Publishers.Google Scholar
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.CrossRefGoogle ScholarPubMed
Suzuki, D. and Knudson, P. (1990). Genethics, revised edn. Cambridge, Mass.: Harvard University Press.Google Scholar
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.CrossRefGoogle ScholarPubMed
Teare, D. M. and Barrett, J. H. (2005). Genetic linkage studies. Lancet 366, 1036–44.CrossRefGoogle Scholar
ten Have, H. A. (2001). Genetics and culture: the geneticisation thesis. Med. Health Care Philosoph. 4, 295–304.CrossRefGoogle Scholar
ten Kate, L. (1998). Editorial. Community Genet. 1, 1–2.Google Scholar
ten Kate, L. (2000). Editorial. Community Genet. 3, 1.Google Scholar
ten Kate, L. (2005). Community genetics: a bridge between clinical genetics and public health. Community Genet. 8, 7–11.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Trujillo, E., Davis, C. and Milner, J. (2006). Nutrigenomics, proteomics, metabolomics, and the practice of dietetics. J. Am. Diet. Assoc. 106, 403–13.CrossRefGoogle ScholarPubMed
Tucker, G. (2004). Pharmacogenetics – expectations and reality. BMJ 329, 4–6.CrossRefGoogle Scholar
Turnpenny, P. and Ellard, S. (2005). Emery's Elements of Medical Genetics, 12th edn. Edinburgh: Churchill Livingstone.Google Scholar
Tutton, R. and Corrigan, O. eds. (2004). Genetic Databases: Socio-Ethical Issues in the Collection and Use of DNA. London: Routledge.Google Scholar
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.CrossRefGoogle ScholarPubMed
UK Government (1967). Abortion Act 1967: Elizabeth II. Chapter 87. London: HMSO.
UK Government (1977). Patents Act 1977: Elizabeth II. London: HMSO.
UK Government (1990). Human Fertilisation and Embryology Act 1990: Elizabeth II. Chapter 37. London: HMSO.
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.
UK Government (1998). Data Protection Act. London: The Stationery Office. Available online at www.opsi.gov.uk/acts/acts1998/19980029.htm.
UK Government (2000). The Patents Regulations 2000. London: The Stationery Office. Available online at www.opsi.gov.uk/si/si2000/20002037.htm.
UK Government (2001a). Health and Social Care Act. London: The Stationery Office. Available online at www.opsi.gov.uk/acts/acts2001/20010015.htm.
UK Government (2001b). Human Reproductive Cloning Act. London: The Stationery Office. Available online at www.legislation.hmso.gov.uk/acts/acts2001/20010023.htm.
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.
UK Government (2002). Medical Devices Regulations 2002. London: The Stationery Office. Available online at www.opsi.gov.uk/si/si2002/20020618.htm.
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/DearColleagueLettersArticle/fs/en?CONTENT_ID=4005488&chk=iwH9UG.
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.
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.
UK Government (2004c). Human Tissue Act. London: The Stationery Office. Available online at www.opsi.gov.uk/acts/acts2004/20040030.htm.
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.
UK Government (2005b). Mental Capacity Act. London: The Stationery Office. Available online at www.opsi.gov.uk/acts/acts2005/20050009.htm.
UK Government (2005c). Disability Discrimination Act. London: The Stationery Office. Available online at www.opsi.gov.uk/ACTS/acts2005/20050013.htm.
UK Government and Association of British Insurers (2005). Concordat and Moratorium on Genetics and Insurance. Available online at www.dh.gov.uk/assetRoot/04/10/60/50/04106050.pdf.
UK Patent Office (2003). Inventions Involving Human Embryonic Stem Cells. Available online at www.patent.gov.uk/patent/notices/practice/stemcells.htm.
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.
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.
UK Stem Cell Initiative (2005). Report and Recommendations. Available online at www.advisorybodies.doh.gov.uk/uksci/uksci-reportnov05.pdf.
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.
UNESCO (2003). International Declaration on Human Genetic Data. Available online at unesdoc.unesco.org/images/0013/001361/136112eb.pdf.
UNESCO (2005). International Declaration on Bioethics and Human Rights. Available online at portal.unesco.org/shs/en/file_download.php/46133e1f4691e4c6e57566763d474a4dBioethicsDeclaration_EN.pdf.
UNESCO International Bioethics Committee (2000). Report on Confidentiality and Genetic Data. Available online at http://portal.unesco.org/shs/en/file_download.php/48de04a5e6de8bc4966add86540d6c71Confidentiality_en.pdf.
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.
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.
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.
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.
US Congress (1990). Americans with Disabilities Act of 1990. Available online at www.usdoj.gov/crt/ada/pubs/ada.txt.
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/.
US Congress (2002). Standards for Privacy of Individually Identifiable Health Information. Final rule. Available online at www.hhs.gov/ocr/hipaa/privrulepd.pdf.
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.
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.
US National Bioethics Advisory Commission (1997). Cloning Human Beings Report and Recommendations. Available onling at www.georgetown.edu/research/nrcbl/nbac/pubscloning1/cloning.pdf.
US President (2000). Executive Order to Prohibit Discrimination in Federal Employment Based on Genetic Information. Available online at www.genome.gov/10002084.
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.
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.CrossRef
Overwalle, G., Zimmern, E., Ver beure, B. and Matthijs, G. (2006). Models for facilitating access to patents on genetic inventions. Nat Rev. Genet. 7, 143–8.CrossRefGoogle ScholarPubMed
Rijn, M. J., Duijn, C. M. and Slooter, A. J. (2005). Impact of generic testing on complex diseases. Eur. J. Epidemiol. 20, 383–8.CrossRefGoogle Scholar
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.CrossRefGoogle Scholar
Wacholder, S., Rothman, N. and Caporaso, N. (2000). Population stratification in epidemiologic studies of common genetic variants and cancer: quantification of bias. J. Natl. Cancer Inst. 92, 1151–8.CrossRefGoogle Scholar
Wacholder, S., Garcia-Closas, M. and Rothman, N. (2002). Study of genes and environmental factors in complex diseases. Lancet 359, 1155–6.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.
Wanless, D. (2004). Securing Good Health for the Whole Population. Available online at www.hm-treasury.gov.uk/consultations_and_legislation/wanless/consult_wanless03_index.cfm.
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.CrossRefGoogle ScholarPubMed
Warnock, M. (1984). Report of the Committee of Inquiry into Human Fertilisation and Embryology. London: The Stationery Office.Google Scholar
Waters, M. D. and Fostel, J. M. (2004). Toxicogenomics and systems toxicology: aims and prospects. Nat. Rev. Genet. 5, 936–48.CrossRefGoogle ScholarPubMed
Weber, W. W. (1997). Pharmacogenetics. Oxford: Oxford University Press.Google Scholar
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.CrossRefGoogle ScholarPubMed
Weeraratna, A. T., Nagel, J. E., Mello-Coelho, V. and Taub, D. D. (2004). Gene expression profiling: from microarrays to medicine. J. Clin. Immunol. 24, 213–24.CrossRefGoogle ScholarPubMed
Wellcome Trust (2004a). Human Tissue Bill – second reading, 15 January 2004. Available online at www.wellcome.ac.uk/doc_wtd002742.html.
Wellcome Trust (2004b). Public Health Sciences: Challenges and Opportunities. Available online at www.wellcome.ac.uk/assets/wtd003191.pdf.
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: meta-analysis of 43 studies. Lancet 363, 689–95.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
White, K. L. (1991). Healing the Schism: Epidemiology, Medicine, and the Public's Health. New York: Springer-Verlag.CrossRefGoogle Scholar
Willett, W. C. (2002). Balancing life-style and genomics research for disease prevention. Science 296, 695–8.CrossRefGoogle ScholarPubMed
Williams, P. and Clow, S. eds. (1999). Genomics Healthcare and Public Policy. London: Office of Health Economics.Google Scholar
Wilson, J. M. G. and Jungner, G. (1968). Principles and Practice of Screening for Disease. Public health paper No. 34. Geneva: World Health Organization.
Wolf, C. R., Smith, G. and Smith, R. L. (2000). Science, medicine and the future: pharmacogenetics. BMJ 320, 987–90.CrossRefGoogle ScholarPubMed
Wolffe, A. P. and Matzke, M. A. (1999). Epigenetics: regulation through repression. Science 286, 481–5.CrossRefGoogle ScholarPubMed
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.
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.
World Health Organization (2002). Human Genetic Technologies. Implications for Preventive Health Care. Geneva: World Health Organization.
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.
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.
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.
World Health Organization Advisory Committee on Health Research (2002). Genomics and World Health. Geneva: World Health Organization.
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.
World Medical Association (2002). Declaration on Ethical Considerations Regarding Health Databases. Available online at www.wma.net/e/policy/d1.htm.
World Medical Association (2005). Statement on Genetics and Medicine. Available online at www.wma.net/e/policy/g11.htm.
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.
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).CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Zerhouni, E. A. (2005). Translational and clinical science – time for a new vision. N. Engl. J. Med. 353, 1621–3.CrossRefGoogle ScholarPubMed
Zimmern, R. L. (2001a). Review. Community Genet. 4, 60.Google Scholar
Zimmern, R. L. (2001b). What is genetic information: whose hands on your genes?Genet. Law Monitor 1, 9–13.Google Scholar
Zimmern, R. L. (2003). Public health genetics. In Encyclopedia of the Human Genome, ed. Cooper, D. N.. London: Macmillan Publishers Ltd., Nature Publishing Group.Google Scholar
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.Google Scholar
Zimmern, R. L. and Stewart, A. (2006). Genetics in disease prevention. In The Oxford Handbook of Public Health Practice, eds. Pencheon, D.et al. Oxford: Oxford University Press.
Academy of Medical Sciences pages on the Human Tissue Act 2004 www.acmedsci.ac.uk/p48prid34.html
Advisory Committee on Genetic Testing archived web pages www.advisorybodies.doh.gov.uk/genetics/acgt/index.htm
American College of Medical Genetics policy statements and practice guidelines www.acmg.net/resources/policy-list.asp
American Society of Human Genetics policy statements genetics.faseb.org/genetics/ashg/pubs/003.shtml
Association of British Insurers www.abi.org.uk
Bioethics Today www.bioethics-today.org/
BioethicsWeb bioethicsweb.ac.uk/
BioNews www.progress.org.uk/News/
Biotechnology and Biological Sciences Research Council www.bbsrc.ac.uk
Blazing a Genetic Trail. Available from the Howard Hughes Medical Institute at www.hhmi.org/genetictrail
British Association for the Advancement of Science www.the-ba.net/the-ba/
British Society for Human Genetics www.bshg.org.uk
British Society for Human Genetics documents and publications www.bshg.org.uk/documents/official_documents.htm
Central Office for Research Ethics Committees (COREC) www.corec.org.uk/
CLIMB: Children Living with Metabolic Disease www.climb.org.uk/
Clinical Laboratory Improvement Amendments program (US) www.cms.hhs.gov/clia/
Clinical Molecular Genetics Society www.cmgs.org/new_cmgs/
Clinical Pathology (UK) Accreditation Ltd www.cpa-uk.co.uk/
Commission for Patient and Public Involvement in Health www.cppih.org/
Contact a Family www.cafamily.org.uk/
COPUS www.copus.org.uk/
Council of Europe www.coe.int/DefaultEN.asp
Department of Energy (US). Human Genome Project Information website. Gene Testing. www.ornl.gov/sci/techresources/Human_Genome/medicine/genetest.shtml
Department of Energy (US). Human Genome Project Information website. Gene Therapy. www.ornl.gov/sci/techresources/Human_Genome/medicine/genetherapy.shtml
Department of Health Genetics pages www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCareTopics/Genetics/GeneticsGeneralInformation/fs/en
Department of Health Genetics, Embryology and Assisted Conception Branch www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCareTopics/Genetics/GeneticsGeneralInformation/GeneticsGeneralArticle/fs/en?CONTENT_ID=4016202&chk=K6kI4B
Department of Health, Health Services Research Programme in Genetics www.genres.org.uk/hsrp/projects.htm
Department of Health and Human Resources (US), Access Excellence Resource Center. Understanding Gene Testing. www.accessexcellence.org/AE/AEPC/NIH/index.html
Department of Health web pages on patient confidentiality and access to health records www.dh.gov.uk/PolicyAndGuidance/InformationPolicy/PatientConfidentialityAndCaldicottGuardians/fs/en
Department of Health web pages on the Human Tissue Act 2004 www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCareTopics/Tissue/TissueGeneralInformation/TissueGeneralArticle/fs/en?CONTENT_ID=4102169&chk=7yP5JQ
Department of Health web pages on the Mental Capacity Act 2005 www.dh.gov.uk/PublicationsAndStatistics/Bulletins/ChiefExecutiveBulletin/ChiefExecutiveBulletinArticle/fs/en?CONTENT_ID=4108436&chk=z0Ds8/
Department of Trade and Industry web pages on science and technology www.dti.gov.uk/industries_science_technology.html
DNA Learning Centre (Cold Spring Harbor, US) website DNA From the Beginningwww.dnaftb.org/dnaftb/index.html
Dolan DNA Learning Center, Cold Spring Harbor Laboratory. Eugenics archive www.eugenicsarchive.org/eugenics/
ESRC Genomics Network www.genomicsforum.ac.uk/default.aspx?pageId=43
Ethox Centre www.ethox.org.uk/
European Bioinformatics Insitute www.ebi.ac.uk
European Commission pages on plans for the Seventh Framework Programme for Research europa.eu.int/comm/research/future/themes/index_en.cfm
European Commission DG Enterprise and Industry website pages on advanced therapies at http://ec.europa.eu/enterprise/pharmaceuticals/advtherapies/index.htm
European Group on Ethics in Science and New Technologies http://ec.europa.eu/european_group_ethics/index_en.htm
European Medicines Agency www.emea.eu.int/home.htm
European Molecular Genetics Quality Network www1.emqn.org/index.html
European Nutrigenomics Organisation www.nugo.org
European Patent Office www.european-patent-office.org/index.en.php
European Society of Human Genetics public policy pages www.eshg.org/PPPC.htm
European Society of Human Genetics www.eshg.org/
European Union Sixth Framework Programme for Research http://cordis.europa.eu/fp6/dc/index.cfm?fuseaction=UserSite.FP6HomePage
GeneCards™ bioinformatics.weizmann.ac.il/cards
Generation Scotland project www.generationscotland.org
Genes and Disease www.ncbi.nlm.nih.gov/disease/
GeneTests www.geneclinics.org
Gene Therapy Advisory Committee www.advisorybodies.doh.gov.uk/genetics/gtac/
Genetic Interest Group www.gig.org.uk/index.html
Genetic Science Learning Center website from the University of Utah in the US gslc.genetics.utah.edu/
Genetics and Insurance Committee www.advisorybodies.doh.gov.uk/genetics/gaic/
Genetics Commissioning Advisory Group www.dh.gov.uk/PolicyAndGuidance/HealthAndSocial CareTopics/Genetics/GeneticsGeneralInformation/GeneticsGeneralArticle/fs/en?CONTENT_ID=4117687&chk=ecpwCW
Genetics Home Reference ghr.nlm.nih.gov
Genome News Network www.genomenewsnetwork.org
Genome News Network. A Quick Guide to Sequenced Genomes. www.genomenewsnetwork.org/resources/sequenced_genomes/genome_guide_p1.shtml
GRaPH Int (Genome based Research and Population Health International Network) www.graphint.org
Guys and St. Thomas' NHS Trust. Tay Sachs programme. http://www.guysandstthomas.nhs.uk/services/managednetworks/childrens/geneticscentre/taysachscarriertesting.aspx
Health Technology Assessment programme www.ncchta.org/
House of Commons Select Committee on Science and Technology www.parliament.uk/parliamentary_committees/science_and_technology_committee.cfm
House of Lords Select Committee on Science and Technology www.parliament.uk/parliamentary_committees/lords_s_t_select.cfm
HuGENet (Human Genome Epidemiology Network) www.cdc.gov/genomics/hugenet
Human Epigenome Consortium Project www.epigenome.org/
Human Fertilisation and Embryology Authority www.hfea.gov.uk
Human Genetics Advisory Commission archived web pages www.advisorybodies.doh.gov.uk/hgac/index.html
Human Genetics Commission www.hgc.gov.uk
Human Genetics Commission web information pages on genetics and employment www.hgc.gov.uk/Client/Content_wide.asp?ContentId=123
Human Genetics Commission web information pages on intellectual property and genetics www.hgc.gov.uk/Client/Content.asp?ContentId=362
Human Genome Organisation (HUGO) ethics committee web pages www.hugo-international.org/committee_ethics_info.htm
Human Genome Program, US Department of Energy www.ornl.gov/sci/techresources/Human_Genome/home.shtml
Human Proteome Organisation www.hupo.org/
Human Tissue Authority www.hta.gov.uk/
HumGen database www.humgen.umontreal.ca/int/index.cfm?lang=1
Institute for the Study of Genetics, Biorisks and Society web pages on BiDil www.nottingham.ac.uk/igbis/reg/bidil.htm#scientific
Journal of Gene Medicinewww.wiley.co.uk/genmed/clinical
Kennedy Institute of Ethics National Information Resource on Ethics and Human Genetics at http://www.georgetown.edu/research/nrcbl/nirehg/index.htm.
Khoury, M. J., Beskow, L. and Gwinn, M. Making The Vision of Genomic Medicine A Reality: The Need for Public Health Research in The 21stCentury. www.cdc.gov/genomics/info/factshts/vision.htm
London IDEAS Department of Health Familial Hypercholesterolaemia Cascade Testing Audit www.fhcascade.org.uk/
Medical Research Council www.mrc.ac.uk
Medical Research Council web pages on the Human Tissue Act 2004 www.mrc.ac.uk/www.mrc.ac.uk/public-human_tissue_consultation.htm
Medicines and Healthcare Products Regulatory Agency www.mhra.gov.uk/home/idcplg?IdcService=SS_GET_PAGE&nodeId=5
Medicines and Healthcare Products Regulatory Agency pages on clinical trials regulation www.mhra.gov.uk/home/idcplg?IdcService=SS_GET_PAGE&nodeId=716
Michigan Center for Genomics and Public Health www.sph.umich.edu/genomics/
National Coalition for Health Professional Education in Genetics www.nchpeg.org/
National Genetics Reference Laboratories www.ngrl.org.uk/Pages/index.htm
National Human Genome Research Institute information about the Human Genome Project www.genome.gov/10001772
National Institute of Environmental Health Sciences (US). Environmental Genome Project. www.niehs.nih.gov/envgenom/
National Institute for Health and Clinical Excellence www.nice.org.uk
National Library for Health's specialist library for clinical genetics (GenePool) www.library.nhs.uk/genepool/
National Service Frameworks, Department of Health website www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCareTopics/fs/en#5295976
Nature Genome Gateway www.nature.com/genomics/
NHGRI health site www.genome.gov/Health
NHS Health Technology Assessment Programme www.hta.nhsweb.nhs.uk/
NHS Institute for Innovation and Improvement www.institute.nhs.uk/default.htm
NHS National Genetics Education and Development Centre www.geneticseducation.nhs.uk/
NHS National Programme for Information Technology (Connecting for Health) www.connectingforhealth.nhs.uk/
NHS Sickle Cell and Thalassaemia Screening Programme www.kcl-phs.org.uk/haemscreening/
North Carolina Center for Genomics and Public Health www.sph.unc.edu/nccgph/
Office of Genomics and Disease Prevention, Centers for Disease Control and Prevention, Atlanta, USA www.cdc.gov/genomics
Office of Genomics and Disease Prevention, US Centers for Disease Control and Prevention. Family History for Preventive Medicine and Public Healthwww.cdc.gov/genomics/activities/famhx.htm
Office of Science and Technology www.ost.gov.uk/index_v4.htm
Office of Science and Technology Public Engagement with Science and Technology (PUSET) website www.dti.gov.uk/ost/ostbusiness/puset/puset.htm
Online Mendelian Inheritance in Man www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM
Patient Information Advisory Group www.advisorybodies.doh.gov.uk/piag/
PharmGKB The pharmacogenetics and pharmacogenomics knowledge base www.pharmgkb.org/
PHGEN (Public Health Genomics European Network) www.phgen.nrw.de/
Public Health Genetics Unit, Cambridge UK. www.phgu.org.uk
Public Health Genetics Unit online newsletter www.phgu.org.uk/newsletter.php
Public Population Project in Genomics (P3G Consortium) www.p3gconsortium.org/. The P3G Observatory pages may be accessed at www.p3gobservatory.org/welcome.do
Royal Institution of Great Britain www.ri.ac.uk/
Royal Society ‘Science in Society’ programme www.royalsoc.ac.uk/page.asp?id=1988
Screening Specialist Library. National Electronic Library for Health. www.libraries.nhs.uk/screening/
Scottish Executive web pages on the Adults with Incapacity (Scotland) Act 2000 www.scotland.gov.uk/Topics/Justice/Civil/16360/4927
Secretary's Advisory Committee on Genetic Testing (US) Archived pages available at www4.od.nih.gov/oba/sacgt.htm
Secretary's Advisory Committee on Genetics, Health and Society (US) www4.od.nih.gov/oba/sacghs/sacghsml.htm
UK Accreditation Service www.ukas.com/
UK Biobank www.biobank.ac.uk
UK Clinical Research Collaboration www.ukcrc.org/
UK Genetic Testing Network www.genetictestingnetwork.org.uk/
UK National Screening Committee www.nsc.nhs.uk/
UK Newborn Screening Programme Centre www.newbornscreening-bloodspot.org.uk/
UK Patent Office www.patent.gov.uk
UK Stem Cell Bank www.ukstemcellbank.org.uk
UNESCO bioethics web pages portal.unesco.org/shs/en/ev.php-URL_ ID=1372&URL_DO=DO_TOPIC&URL_SECTION=201.html
unique: Rare Chromosome Disorder Support Group www.rarechromo.org/
University of Washington Center for Genomics and Public Health depts.washington.edu/cgph/
Wellcome Trust Human Genome website www.wellcome.ac.uk/en/genome
Wellcome Trust Sanger Institute www.sanger.ac.uk/
World Health Organization Genomic Resource Centre. www.who.int/genomics/en/
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.
Academy of Medical Sciences (2003). Strengthening Clinical Research. Available online at www.acmedsci.ac.uk/images/project/Report.pdf.
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.
Acheson, L. S. and Wiesner, G. L. (2004a). Current and future applications of genetics in primary care medicine. Prim. Care 31, 449–60.CrossRefGoogle Scholar
Acheson, L. S. and Wiesner, G. L. eds. (2004b). Genetics for Primary Care Clinicians. Prim. Care 31.Google Scholar
Aderem, A. (2005). Systems biology: its practice and challenges. Cell 121, 511–13.CrossRefGoogle ScholarPubMed
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.
Andrews, L. B. (2002). Genes and patent policy: rethinking intellectual property rights. Nat. Rev. Genet. 3, 803–8.CrossRefGoogle ScholarPubMed
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.Google Scholar
Article 29 Data 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.
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.
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.
Banks, E. and Meade, T. (2002). The study of genes and environmental factors in common disease. Lancet 359, 1156–7.CrossRefGoogle Scholar
Banks, R. E., Dunn, M. J., Hochstrasses, D. F.et al. (2000). Proteomics: new perspectives, new biomedical opportunities. Lancet 356, 1749–56.CrossRefGoogle ScholarPubMed
Bayat, A. (2002). Bioinformatics. BMJ 324, 1018–22.CrossRefGoogle ScholarPubMed
Bell, J. (1998). The new genetics in clinical practice. BMJ 316, 618–20.CrossRefGoogle ScholarPubMed
Bell, J. (2004). Predicting disease using genomics. Nature 429, 453–6.CrossRefGoogle ScholarPubMed
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.Google ScholarPubMed
Bioscience Innovation and Growth Team (2003). Bioscience 2015. Available online at www.bioindustry.org/bigtreport/.
Bostyn, S. J. R. (2003). The prodigal son: the relationship between patent law and health care. Med. Law Rev. 11, 67–120.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.Google ScholarPubMed
Brice, P. (2004). Array of hope. Health Serv. J. 114, 24–5.Google ScholarPubMed
Brice, P. and Sanderson, S. (2006a). Genetics, health and medicine. Pharm. J. 277, 53–56.Google Scholar
Brice, P. and Sanderson, S. (2006b). Use for genetics in pharmacy. Pharm. J. 277, 109–12.Google Scholar
Brice, P. and Sanderson, S. (2006c). Pharmacogenetics: what are the ethical and economic implications?Pharm. J. 277, 113–14.Google Scholar
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.
British Medical Association (1998). Human Genetics: Choice and Responsibility. Oxford: Oxford University Press.
British Medical Association (1999). Confidentiality and Disclosure of Health Information. Available online at www.bma.org.uk/ap.nsf/Content/Confidentialitydisclosure.
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.
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.
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.CrossRefGoogle ScholarPubMed
Brock, D. (2002). Human cloning and our sense of self. Science 296, 314–16.CrossRefGoogle ScholarPubMed
Buchanan, A. E., Brock, D. W., Daniels, N. and Wikler, D. (2000). Chance to Choice: Genetics and Justice. Cambridge: Cambridge University Press.CrossRefGoogle Scholar
Burke, W. (2002). Genetic testing. N. Engl. J. Med. 347, 1867–75.CrossRefGoogle ScholarPubMed
Burke, W. (2003). Genomic medicine: genomics as a probe for disease biology. N. Engl. J. Med. 349, 969–74.CrossRefGoogle Scholar
Burke, W. (2004). Genetic testing in primary care. Annu. Rev. Genomics Hum. Genet. 5, 1–14.CrossRefGoogle ScholarPubMed
Burke, W. (2005). Contributions of public health to genetics education for health professionals. Health Educ. Behav. 32, 668–75.CrossRefGoogle Scholar
Burke, W. and Emery, J. (2002). Genetics education for primary-care providers. Nat. Rev. Genet. 3, 561–6.CrossRefGoogle ScholarPubMed
Burke, W. and Zimmern, R. L. (2004). Ensuring the appropriate use of genetic tests. Nat. Rev. Genet. 5, 955–8.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
Burt, R. and Neklason, D. W. (2005). Genetic testing for inherited colon cancer. Gastroenterology 128, 1696–716.CrossRefGoogle ScholarPubMed
Burton, H. (2003). Addressing Genetics, Delivering Health. Available online at www.phgu.org.uk/addressing_genetics.shtml.
Burton, H. (2005). Metabolic Pathways. Networks of Care. Cambridge: Public Health Genetics Unit. Available online at www.phgu.org.uk.Google Scholar
Burton, P., McCarthy, M. and Elliott, P. (2002). The study of genes and environmental factors in common disease. Lancet 359, 1155.CrossRefGoogle Scholar
Burton, P. R., Tobin, M. D. and Hopper, J. L. (2005). Key concepts in genetic epidemiology. Lancet 366, 941–51.CrossRefGoogle ScholarPubMed
Calvo, K. R., Liotta, L. A. and Petricoin, E. F. (2005). Clinical proteomics: from biomarker discovery and cell signaling profiles to individualized personal therapy. Biosci. Rep. 25, 107–25.CrossRefGoogle ScholarPubMed
Cambon-Thomsen, A. (2004). The social and ethical issues of post-genomic human biobanks. Nat. Rev. Genet. 5, 866–73.CrossRefGoogle ScholarPubMed
Campbell, H. and Rudan, I. (2002). Interpretation of genetic association studies in complex disease. Pharmacogenomics J. 2, 349–60.CrossRefGoogle ScholarPubMed
Cardon, L. R. and Abecasis, G. R. (2003). Using haplotype blocks to map human complex trait loci. Trends Genet. 19, 135–40.CrossRefGoogle ScholarPubMed
Cavazzana-Calvo, M., Thrasher, A. and Mavilio, F. (2004). The future of gene therapy. Nature 427, 779–81.CrossRefGoogle ScholarPubMed
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.
Chadwick, R., Levitt, M. and Shickle, D. (1997). The Right to Know and the Right Not to Know. Aldershot: Avebury.Google Scholar
Christianson, A. and Modell, B. (2004). Medical genetics in developing countries. Annu. Rev. Genomics Hum. Genet. 5, 219–65.CrossRefGoogle ScholarPubMed
Chung, D. C. and Rustgi, A. K. (2003). The hereditary nonpolyposis colorectal cancer syndrome: genetics and clinical implications. Ann. Intern. Med. 138, 560–70.CrossRefGoogle ScholarPubMed
Clarke, A., ed. (1998). The Genetic Testing of Children. Oxford: Bios Scientific Publishers.Google Scholar
Clayton, D. and McKeigue, P. M. (2001). Epidemiological methods for studying genes and environmental factors in complex diseases. Lancet 358, 1356–60.CrossRefGoogle ScholarPubMed
Clayton, E. W. (2003). Genomic medicine: ethical, legal, and social implications of genomic medicine. N. Engl. J. Med. 349, 562–9.CrossRefGoogle ScholarPubMed
Clinical Genetics Society (1994). The Genetic Testing of Children. Available online at www.bshg.org.uk/documents/official_docs/testchil.htm.
Collins, F. S. (1999). Shattuck lecture – medical and societal consequences of the human genome project. N. Engl. J. Med. 341, 28–37.CrossRefGoogle ScholarPubMed
Collins, F. S. (2003). A vision for the future of genomics research. Nature 422, 835–47.CrossRefGoogle ScholarPubMed
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.
Consumers' Association and GeneWatch UK (2002). Genetic Testing in the High Street. Available online at www.genewatch.org/HumanGen/tests/Letters/GeneWatch.doc.
Cooke, G. S. and Hill, A. V. (2001). Genetics of susceptibility to human infectious disease. Nat. Rev. Genet. 2, 967–77.CrossRefGoogle ScholarPubMed
Cordell, H. J. and Clayton, D. G. (2005). Genetic association studies. Lancet 366, 1121–31.CrossRefGoogle ScholarPubMed
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.
Costa, L. G. (2000). The emerging field of ecogenetics. Neurotoxicology 21, 85–9.Google ScholarPubMed
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.
Council of Europe (1997). Convention on Human Rights and Biomedicine. Available online at conventions.coe.int/treaty/en/treaties/html/164.htm.
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.
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.
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
Department of Health (1993). Population Needs and Genetic Services: An Outline Guide. London: HMSO.
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.
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.
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/PublicationsPolicyAndGuidanceArticle/fs/en?CONTENT_ID=4118936&chk=2yGYxK.
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.
Department of Health (2001). The Expert Patient: A New Approach to Chronic Disease Management in the 21stCentury. Available online at www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidance/PublicationsPolicyAndGuidanceArticle/fs/en?CONTENT_ID=4006801&chk=UQCoh9.
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.
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.
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.
Department of Health (2003b). Confidentiality. NHS Code of Practice. Available online at www.dh.gov.uk/assetRoot/04/06/92/54/04069254.pdf.
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.
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.
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.
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.
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.
Department of Health (2004e). Modernising Pathology Services. Available online at www.dh.gov.uk/assetRoot/04/07/31/12/04073112.pdf.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Department of Health and HM Government (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.
Donnai, D. (2002). Genetics services. Clin. Genet. 61, 1–6.CrossRefGoogle Scholar
Donnai, D. and Elles, R. (2001). Integrated regional genetics services: current and future provision. BMJ 322, 1048–52.CrossRefGoogle ScholarPubMed
Downward, J. (2004). RNA interference. BMJ 328, 1245–8.CrossRefGoogle ScholarPubMed
Emens, L. (2005). Trastuzumab: targeted therapy for the management of HER-2/neu over-expressing metastatic breast cancer. Am. J. Ther. 12, 243–53.Google Scholar
Engel, L. S., Taioli, E., Pfeiffer, R.et al. (2002). Pooled analysis and meta-analysis of glutathione S-transferase M1 and bladder cancer: a HuGE review. Am. J. Epidemiol. 156, 95–109 [Erratum in: Am. J. Epidemiol. (2002) 156, 492.]CrossRefGoogle ScholarPubMed
Equalities Review (2005). Interim Report for Consultation. Available online at www.theequalitiesreview.org.uk/Sites/www.theequalitiesreview.org.uk/publications/interim_report.aspx.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
European Patent Office (1973, with subsequent amendments). European Patent Convention. Available online at www.european-patent-office.org/legal/epc/.
European Society of Human Genetics (2003). International coverage of all aspects of human genetics. Eur. J. Hum. Genet. 11, suppl. 2.
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
Farrall, M. and Morris, A. P. (2005). Gearing up for genome-wide gene-association studies. Hum. Mol. Genet. 14 (Review Issue 2), R157–62.CrossRefGoogle ScholarPubMed
Fears, R., Weatherall, D. and Poste, G. (1999). The impact of genetics on medical education and training. Br. Med. Bull. 55, 460–70.CrossRefGoogle ScholarPubMed
Feinberg, A. P., Ohlsson, R. and Henikoff, S. (2006). The epigenetic progenitor origin of human cancer. Nat. Rev. Genet. 7, 21–3.CrossRefGoogle ScholarPubMed
Fineman, R. (1999). Qualifications of public health geneticists?Community Genet. 2, 113–14.Google ScholarPubMed
Firth, H. and Hurst, J. (2005). Oxford Desk Reference – Clinical Genetics. Oxford: Oxford University Press.Google Scholar
Food and Drug Administration (US) (2005). Guidance for Industry. Pharmacogenomic Data Submissions. Available online at www.fda.gov/cber/gdlns/pharmdtasub.htm.
Fox Keller, E. (2000). The Century of the Gene. Cambridge, Mass.: Harvard University Press.Google Scholar
Gelehrter, T. D., Collins, F. and Ginsburg, D. (1998). The Principles of Medical Genetics, 2nd edn. New York: Lippincott Williams and Wilkins.Google Scholar
General Medical Council (2002). Research: The Role and Responsibilities of Doctors. Available online at www.gmc-uk.org/guidance/library/research.asp.
General Medical Council (2004). Confidentiality: Protecting and Providing Information. Available online at www.gmc-uk.org/guidance/library/confidentiality.asp.
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.
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.CrossRefGoogle ScholarPubMed
Grace, J., El Toukhy, T. and Braude, P. (2004) Pre-implantation genetic testing. Br. J. Obstet. Gynaecol. 111, 1165–73.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
Guttmacher, A. E. and Collins, F. S. (2002). Genomic medicine – a primer. N. Engl. J. Med. 347, 1512–20.CrossRefGoogle ScholarPubMed
Guttmacher, A. E. and Collins, F. S. (2005). Realizing the promise of genomics in biomedical research. J. Am. Med. Assoc. 294, 1399–402.CrossRefGoogle ScholarPubMed
Gwinn, M. and Khoury, M. J. (2002). Research priorities for the public health sciences in the post-genomic era. Genet. Med. 4, 410–11.CrossRefGoogle Scholar
Hadfield, S. G. and Humphries, S. E. (2005). Implementation of cascade testing for the detection of familial hypercholesterolaemia. Curr. Opin. Lipidol. 16, 428–33.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Harris, J. (2000). Is there a coherent social conception of disability?J. Med. Ethics 26, 95–100.CrossRefGoogle Scholar
Harris, J. and Holm, S., eds. (1998). The Future of Human Reproduction: Ethics, Choice and Regulation. Oxford: Clarendon Press.Google Scholar
Hattersley, A. T. and McCarthy, M. I. (2005). What makes a good genetic association study?Lancet 366, 1315–23.CrossRefGoogle ScholarPubMed
Healthcare Industry Task Force (2004). Better Health Through Partnership. Available online at www.dh.gov.uk/assetRoot/04/09/52/23/04095223.pdf.
Hedgecoe, A. (2001). Ethical boundary work: geneticisation, philosophy and the social sciences. Med. Health Care Philosoph. 4, 305–9.CrossRefGoogle Scholar
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.Google Scholar
Hinxton Group (2006). An International Consortium on Stem Cells, Ethics and Law. Consensus Statement. Available online at www.hopkinsmedicine.org/bioethics/finalsc.doc.
Hirschhorn, J. N. and Daly, M. J. (2005). Genome-wide association studies for common diseases and complex traits. Nat. Rev. Genet. 6, 95–108.CrossRefGoogle ScholarPubMed
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.
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.CrossRefGoogle Scholar
Holtzman, N. A. (1989). Proceed with Caution: Predicting Genetic Risks in the Recombinant DNA Era. Baltimore: Johns Hopkins University Press.Google Scholar
Holtzman, N. A. (2006). What role for public health in genetics and vice versa?Community Genet. 9, 8–20.Google ScholarPubMed
Holtzman, N. A. and Marteau, T. M. (2000). Will genetics revolutionize medicine?N. Engl. J. Med. 343, 141–4.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
Hopper, J. L., Bishop, D. T. and Easton, D. F. (2005). Population based family studies in genetic epidemiology. Lancet 366, 1397–406.CrossRefGoogle ScholarPubMed
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.
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.
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.
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.
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.
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.
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.
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.
Hubbard, R. and Wald, E. (1997). Exploding the Gene Myth. Boston: Beacon Press.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.
Human Fertilisation and Embryology Authority (2003b). Sex Selection: Report Summary. Available online at www.hfea.gov.uk/AboutHFEA/Consultations/Final%20sex%20selection%20summary.pdf.
Human Fertilisation and Embryology Authority (2004a). Report of the Preimplantation Tissue Typing Policy Review. Available online at www.hfea.gov.uk/AboutHFEA/HFEAPolicy/Preimplantationtissuetyping.
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.
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.
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.
Human Genetics Advisory Commission (1999). The Implications of Genetic Testing for Employment. Available online at www.advisorybodies.doh.gov.uk/hgac/papers/paperg1.htm.
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%20 Reproduction%20 Science%20and%20Medicine%20Report.pdf.
Human Genetics Commission (2001). Public Attitudes to Human Genetic Information. Available online at www.hgc.gov.uk/UploadDocs/DocPub/Document/morigeneticattitudes.pdf.
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.
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.
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.
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.
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.
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.
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Hunter, D. J. (2005). Gene–environment interactions in human disease. Nat. Rev. Genet. 6, 287–98.CrossRefGoogle Scholar
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.
Information Commissioner (2005a). Employment practices code. Available online at www.ico.gov.uk/upload/documents/library/data_protection/practical_application/ICO_EmpPracCode.pdf.
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.
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.CrossRefGoogle ScholarPubMed
Jackson, E. (2001). Regulating Reproduction: Law, Technology and Autonomy. Oxford: Hart Publishing.Google Scholar
Janssens, A. C., Pardo, M. C., Steyerberg, E. W. and Duijn, C. M. (2005). Revisiting the clinical validity of multiplex genetic testing in complex diseases. Am. J. Hum. Genet. 74, 585–8.CrossRefGoogle Scholar
Joint Committee on Medical Genetics (2006). Consent and Confidentiality. London: British Society of Human Genetics, Royal College of Pathologists, Royal College of Physicians.
Jones, M. and Salter, B. (2003). The governance of human genetics: policy discourse and constructions of public trust. New Genet. Soc. 22, 21–41.CrossRefGoogle ScholarPubMed
Juengst, E. T. (1995). ‘Prevention’ and the goals of genetic medicine. Hum. Gene Ther. 6, 1595–605.CrossRefGoogle ScholarPubMed
Kanehisa, M. and Bork, P. (2003). Bioinformatics in the post-sequence era. Nat. Genet. 33, 305–10.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Kerr, A. and Shakespeare, T. (1999). Genetic Politics: From Eugenics to Genome (Issues in Social Policy). Cheltenham: New Clarion Press.Google Scholar
Kevles, D. J. (1995). In the Name of Eugenics: Genetics and the Uses of Human Heredity. Cambridge, Mass.: Harvard University Press.Google Scholar
Khoury, M. J. (1996). From genes to public health: application of genetics in disease prevention. Am. J. Public Health. 86, 1717–22.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
Khoury, M. J. (2004). The case for a global human genome epidemiology initiative. Nat. Genet. 36, 1027–8.CrossRefGoogle ScholarPubMed
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.Google ScholarPubMed
Khoury, M. J., Burke, W. and Thomson, E. J., eds. (2000). Genetics and Public Health in the 21st Century. New York: Oxford University Press.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
Khoury, M. J., Little, J. and Burke, W. eds. (2004a). Human Genome Epidemiology. Oxford: Oxford University Press.Google Scholar
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.Google Scholar
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
King, R. A., Rotter, J. I. and Motulsky, A. G. (2002). The Genetic Basis of Common Diseases, 2nd edn. New York: Oxford University Press.Google Scholar
Kirkman, M. (2005). Public health and the challenge of genomics. Aust. N. Z. J. Public Health 29, 163–5.CrossRefGoogle ScholarPubMed
Knoppers, B. M. and Fecteau, C. (2003). Human genomic databases: a global public good?Eur. J. Health Law 10, 27–41.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Krause, D. E. and Etten, R. A. (2005). Tyrosine kinases as targets for cancer therapy. N. Engl. J. Med. 353, 172–87.CrossRefGoogle ScholarPubMed
Kroese, M., Zimmern, R. and Sanderson, S. (2004). Genetic tests and their evaluation: can we answer the key questions?Genet. Med. 6, 475–80.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Lambert, D. (2003). Lambert Review of Business–University Collaboration. Available online at www.hm-treasury.gov.uk/media/EA556/lambert_review_final_450.pdf.
Last, J. M. ed. (2001). A Dictionary of Epidemiology, 4th edn. New York: Oxford University Press.Google Scholar
Laurie, G. (2002). Genetic Privacy: A Challenge to Medico-Legal Norms. Cambridge: Cambridge University Press.CrossRefGoogle Scholar
Lee, R. G. and Morgan, D. (2001). Human Fertilisation and Embryology: Regulating the Reproductive Revolution. London: Blackstone Press.Google Scholar
Lenaghan, J. (1998). Brave New NHS: The Impact of the New Genetics on the Health Service. London: Institute of Public Policy Research.Google Scholar
Lerman, C. and Shields, A. E. (2004). Genetic testing for cancer susceptibility: the promise and the pitfalls. Nat. Rev. Cancer 4, 235–41.CrossRefGoogle ScholarPubMed
Lewontin, R. C., Rose, S. and Kamin, L. (1984). Not in our Genes. New York: Pantheon Books.Google Scholar
Liddell, K. and Hall, A. (2005). Beyond Bristol and Alder Hey: the future regulation of human tissue. Med. Law Rev. 13, 137–69.CrossRefGoogle Scholar
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/.CrossRefGoogle Scholar
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.CrossRefGoogle Scholar
Little, J. and Khoury, M. J. (2003). Mendelian randomisation: a new spin or real progress?Lancet 362, 930–1.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Little, J., Sharp, L., Khoury, M. J., Bradley, L. and Gwinn, M. (2005). The epidemiologic approach to pharmacogenomics. Am. J. Pharmacogenomics 5, 1–20.CrossRefGoogle ScholarPubMed
Lockwood, M. (2001). The moral status of the human embryo. Hum. Fertil. 4, 267–9.CrossRefGoogle ScholarPubMed
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.
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.Google Scholar
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.Google Scholar
Lucassen, A., Parker, M. and Wheeler, R. (2006). Implications of data protection legislation for family history. BMJ 332, 299–301.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Maier, L. (2002). Genetic and exposure risks for chronic beryllium disease. Clin. Chest Med. 23, 827–39.CrossRefGoogle ScholarPubMed
Marteau, T. M. and Lerman, C. (2001). Genetic risk and behavioural change. BMJ 322, 1056–9.CrossRefGoogle ScholarPubMed
Marteau, T. M. and Richards, M. eds. (1999). The Troubled Helix: Social and Psychological Implications of the New Human Genetics. Cambridge: Cambridge University Press.Google Scholar
Martin, N. G., Eaves, L. J. and Fulker, D. W. (1978). The power of the classical twin study. Heredity 40, 97–116.CrossRefGoogle ScholarPubMed
Martinez Arias, A. and Stewart, A. (2002). Molecular Principles of Animal Development. Oxford: Oxford University Press.Google Scholar
Mason, K. and Laurie, G. (2006). Mason and McCall Smith's Law and Medical Ethics. Oxford: Oxford University Press.Google Scholar
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.CrossRefGoogle ScholarPubMed
McCabe, L. L. and McCabe, E. R. (2004). Genetic screening: carriers and affected individuals. Annu. Rev. Genomics Hum. Genet. 5, 57–69.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle Scholar
McGlennan, T. (2001). Insurance and Genetic Information. Association of British Insurers Research Report.
McHale, J. (2004). Regulating genetic databases: some legal and ethical issues. Med. Law Rev. 12, 70–96.CrossRefGoogle Scholar
McKusick, V. A. (1998). Mendelian Inheritance in Man, 12th edn. Baltimore: Johns Hopkins University Press.Google Scholar
McVean, G., Spencer, C. C. A. and Chaix, R. (2005). Perspectives on human genetic variation from the HapMap project. PloS Genetics 1: e54.CrossRefGoogle ScholarPubMed
Medical Research Council (undated). Stem Cell Therapy. Available online at www.mrc.ac.uk/pdf_stem_cells.pdf.
Medical Research Council (2000, with update in 2003). Personal Information in Medical Research. Available online at www.mrc.ac.uk/pdf-pimr.pdf.
Melzer, D. and Zimmern, R. (2002). Genetics and medicalisation. BMJ 321, 863–4.CrossRefGoogle Scholar
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.Google Scholar
Merikangas, K. R. and Risch, N. (2003). Genomic priorities and public health. Science 302, 599–601.CrossRefGoogle ScholarPubMed
Meyer, U. A. (2004). Pharmacogenetics – five decades of therapeutic lessons from genetic diversity. Nat. Rev. Genet. 5, 669–76.CrossRefGoogle ScholarPubMed
Modell, B. and Kuliev, A. (1998). The history of community genetics: the contribution of the haemoglobin disorders. Community Genet. 1, 3–12.Google ScholarPubMed
Mount, D. W. and Pandey, R. (2005). Using bioinformatics and genome analysis for new therapeutic interventions. Mol. Cancer Ther. 4, 1636–43.CrossRefGoogle ScholarPubMed
Mulkay, M. (1997). The Embryo Research Debate: Science and the Politics of Reproduction. Cambridge: Cambridge University Press.CrossRefGoogle Scholar
Muller, M. and Kersten, S. (2003). Nutrigenomics: goals and strategies. Nat. Rev. Genet. 4, 315–22.CrossRefGoogle ScholarPubMed
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. Rothstein, M. A., pp. 60–73. New Haven: Yale University Press.Google Scholar
Narod, S. A. and Offit, K. (2005). Prevention and management of hereditary breast cancer. J. Clin. Oncol. 23, 1656–63.CrossRefGoogle ScholarPubMed
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.
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.
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.CrossRefGoogle ScholarPubMed
Nelkin, D. and Lindee, M. S. (1995). The DNA Mystique: The Gene as a Cultural Icon. New York: W. H. Freeman and Co.Google Scholar
NHS Central Research and Development Committee (1995a). Genetics of Common Disease. London: Department of Health.
NHS Central Research and Development Committee (1995b). Report of the Genetics Research Advisory Group. London: Department of Health.
Nicholson, R. (2004). Another threat to research in the United Kingdom. BMJ 328, 1212–13.CrossRefGoogle ScholarPubMed
Nowlan, W. (2002). A rational view of insurance and genetic information. Science 297, 195–6.CrossRefGoogle Scholar
Nuffield Council on Bioethics (1998). Mental Disorders and Genetics. London: Nuffield Council on Bioethics. Available online at www.nuffieldbioethics.org/go/ourwork/mentaldisorders/introduction.
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.
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.
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.
Nuffield Council on Bioethics (2003). Pharmacogenetics: Ethical Issues. Available online at www.nuffieldbioethics.org/go/ourwork/pharmacogenetics/introduction.
O'Connor, T. P. and Crystal, R. G. (2006). Genetic medicines: treatment strategies for hereditary disorders. Nat. Rev. Genet. 7, 261–76.CrossRefGoogle ScholarPubMed
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.
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.
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.
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.
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.
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.
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.CrossRefGoogle ScholarPubMed
Palmer, L. J. and Cardon, L. R. (2005). Shaking the tree: mapping complex disease genes with linkage disequilibrium. Lancet 366, 1223–34.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Parliamentary Office of Science and Technology (2003a). Medical Self-Test Kits. Postnote number 194. Available online at www.parliament.uk/post/pn194.pdf.
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.
Parliamentary Office of Science and Technology (2004a). NHS Genetic Testing. Postnote number 227. Available online at www.parliament.uk/documents/upload/POSTpn227.pdf.
Parliamentary Office of Science and Technology (2004b). Regulating Stem Cell Therapies. Postnote number 221. Available online at www.parliament.uk/documents/upload/POSTpn221.pdf.
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.
Parliamentary Office of Science and Technology (2005b). Gene Therapy. Postnote number 240. Available online at www.parliament.uk/documents/upload/POSTpn240.pdf.
Parry, B. (2004). Trading the Genome: Investigating the Commodification of Bio-Information. New York: Columbia University Press.CrossRefGoogle Scholar
Patrizio, P., Mastroianni, A. C. and Mastroianni, L. (2001). Disclosure to children conceived with donor gametes should be optional. Hum Reprod. 16, 2036–8.CrossRefGoogle ScholarPubMed
Patterson, S. D. and Aebersold, R. H. (2003). Proteomics: the first decade and beyond. Nat. Genet. 33, 311–23.CrossRefGoogle ScholarPubMed
Pencheon, D., Guest, C., Melzer, D. and Gray, M. eds. (2006). The Oxford Handbook of Public Health Practice. Oxford: Oxford University Press.CrossRefGoogle Scholar
Pennisi, E. (2004). Searching for the genome's second code. Science 306, 632–5.CrossRefGoogle ScholarPubMed
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. Bennett, B. and Tomossy, G. F., pp. 151–67. New York: Springer.Google Scholar
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.CrossRefGoogle Scholar
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.Google ScholarPubMed
Pollock, A., McNally, N. and Kerrison, S. (2006). Best research. BMJ 332, 247–8.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Qureshi, N., Modell, B. and Modell, M. (2004). Timeline: raising the profile of genetics in primary care. Nat. Rev. Genet. 5, 783–90.CrossRefGoogle ScholarPubMed
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.
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.
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.
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.
R (on the application of Quintavalle) v Secretary of State for Health (2002) EWCA Civ 29. Appeal Court judgment.
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.
Reindal, S. M. (2000). Disability, gene therapy and eugenics – a challenge to John Harris. J. Med. Ethics 26, 89–94.CrossRefGoogle ScholarPubMed
Richards, M. P. M. (1996). Lay and professional knowledge of genetics and inheritance. Public Underst. Sci. 5, 217–30.CrossRefGoogle Scholar
Richards, M. P. M. (1997). It runs in the family: lay knowledge about inheritance. In Culture, Kinship and Genes, ed. Clark, A., pp. 175–94. Basingstoke: Macmillan Publishers.CrossRefGoogle Scholar
Richards, M. (2001). How distinctive is genetic information?Stud. Hist. Phil. Biol. & Biomed. Sci. 32, 663–87.CrossRefGoogle Scholar
Richmond, M. (1999). Human Genomics: Prospects for Health Care and Public Policy. London: University College London School of Public Policy.Google Scholar
Ridley, M. (1999). Genome: The Autobiography of a Species in 23 Chapters. New York: HarperCollins.Google Scholar
Ridley, M. (2003). Nature Via Nurture. Genes, Experience and What Makes us Human. London: Fourth Estate.Google Scholar
Risch, N., Burchard, E., Ziv, E. and Tang, H. (2002). Categorisation of humans in biomedical research: genes, race and disease. Genome Biol. 3: comment2007. Epub 2002 Jul 1.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
Rose, G. (1985). Sick individuals and sick populations. Int. J. Epidemiol. 14, 32–8.CrossRefGoogle ScholarPubMed
Rose, P. and Lucassen, A. (1999). Practical Genetics for Primary Care. Oxford: Oxford University Press.Google Scholar
Roses, A. D. (2002). Genome-based pharmacogenetics and the pharmaceutical industry. Nat. Rev. Drug Discov. 1, 541–9.CrossRefGoogle ScholarPubMed
Rothman, K. J. (2002). Epidemiology: An Introduction. Oxford: Oxford University Press.Google Scholar
Rothman, K. J. and Greenland, S., eds. (1998). Modern Epidemiology, 2nd edn. Baltimore: Lippincott Williams and Wilkins.Google Scholar
Royal College of Physicians (1996). Clinical Genetics into the Twenty-First Century. London: Royal College of Physicians.
Royal College of Physicians (1998a). Clinical Genetic Services: Activity, Outcome, Effectiveness and Quality. London: Royal College of Physicians.
Royal College of Physicians (1998b). Retention of Medical Records with Particular Reference to Medical Genetics. London: Royal College of Physicians.
Royal College of Physicians (1998c). Commissioning Clinical Genetic Services. London: Royal College of Physicians.
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.
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.
Royal Society, The (1998). Whither Cloning? Available online at www.royalsoc.ac.uk/displaypagedoc.asp?id=11525.
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.
Royal Society, The (2003). Stem Cell Research and Therapeutic Cloning: An Update. Available online at www.royalsoc.ac.uk/displaypagedoc.asp?id=11474.
Royal Society, The (2005). Personalised Medicine: Hopes and Realities. Available online at www.royalsoc.ac.uk/document.asp?tip=0&id=3780.
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.
Sadee, W. and Dai, Z. (2005). Pharmacogenetics/genomics and personalized medicine. Hum. Mol. Genet. 14 Review issue 2, R207–14.CrossRefGoogle ScholarPubMed
Sakar, S. (1998). Genetics and Reductionism: a Primer. Cambridge: Cambridge University Press.CrossRefGoogle Scholar
Salanti, G., Sanderson, S. and Higgins, J. P. (2005). Obstacles and opportunities in meta-analysis of genetic association studies. Genet. Med. 7, 13–20.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle Scholar
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.CrossRefGoogle Scholar
Sankar, P. (2003). Genetic privacy. Annu. Rev. Med. 54, 393–407.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
Schmitz, D. and Wiesing, U. (2006). Just a family medical history?BMJ 332, 297–9.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
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.
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.
Segal, S. and Hill, A. V. (2003). Genetic susceptibility to infectious disease. Trends Microbiol. 11, 445–8.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Singer, P. A. and Daar, A. S. (2001). Harnessing genomics and biotechnology to improve global health equity. Science 294, 2289–90.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Stears, R. L., Martinsky, T. and Schena, M. (2003). Trends in microarray analysis. Nat. Med. 9, 140–5.CrossRefGoogle ScholarPubMed
Steinbrook, R. (2006). Egg donation and human embryonic stem-cell research. N. Engl. J. Med. 354, 324–6.CrossRefGoogle ScholarPubMed
Stevenson, M. (2004). Therapeutic potential of RNA interference. N. Engl. J. Med. 351, 1772–7.CrossRefGoogle ScholarPubMed
Strachan, T. and Read, A. (2003). Human Molecular Genetics, 3rd edn. New York: Garland Science.Google Scholar
Sudbery, P. (2002). Human Molecular Genetics, 2nd edn. Harlow: Prentice Hall.Google Scholar
Sulston, J. and Ferry, G. (2002). The Common Thread. A Story, of Science, Politics, Ethics and the Human Genome. London: Bantam Press, Transworld Publishers.Google Scholar
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.CrossRefGoogle ScholarPubMed
Suzuki, D. and Knudson, P. (1990). Genethics, revised edn. Cambridge, Mass.: Harvard University Press.Google Scholar
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.CrossRefGoogle ScholarPubMed
Teare, D. M. and Barrett, J. H. (2005). Genetic linkage studies. Lancet 366, 1036–44.CrossRefGoogle Scholar
ten Have, H. A. (2001). Genetics and culture: the geneticisation thesis. Med. Health Care Philosoph. 4, 295–304.CrossRefGoogle Scholar
ten Kate, L. (1998). Editorial. Community Genet. 1, 1–2.Google Scholar
ten Kate, L. (2000). Editorial. Community Genet. 3, 1.Google Scholar
ten Kate, L. (2005). Community genetics: a bridge between clinical genetics and public health. Community Genet. 8, 7–11.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Trujillo, E., Davis, C. and Milner, J. (2006). Nutrigenomics, proteomics, metabolomics, and the practice of dietetics. J. Am. Diet. Assoc. 106, 403–13.CrossRefGoogle ScholarPubMed
Tucker, G. (2004). Pharmacogenetics – expectations and reality. BMJ 329, 4–6.CrossRefGoogle Scholar
Turnpenny, P. and Ellard, S. (2005). Emery's Elements of Medical Genetics, 12th edn. Edinburgh: Churchill Livingstone.Google Scholar
Tutton, R. and Corrigan, O. eds. (2004). Genetic Databases: Socio-Ethical Issues in the Collection and Use of DNA. London: Routledge.Google Scholar
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.CrossRefGoogle ScholarPubMed
UK Government (1967). Abortion Act 1967: Elizabeth II. Chapter 87. London: HMSO.
UK Government (1977). Patents Act 1977: Elizabeth II. London: HMSO.
UK Government (1990). Human Fertilisation and Embryology Act 1990: Elizabeth II. Chapter 37. London: HMSO.
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.
UK Government (1998). Data Protection Act. London: The Stationery Office. Available online at www.opsi.gov.uk/acts/acts1998/19980029.htm.
UK Government (2000). The Patents Regulations 2000. London: The Stationery Office. Available online at www.opsi.gov.uk/si/si2000/20002037.htm.
UK Government (2001a). Health and Social Care Act. London: The Stationery Office. Available online at www.opsi.gov.uk/acts/acts2001/20010015.htm.
UK Government (2001b). Human Reproductive Cloning Act. London: The Stationery Office. Available online at www.legislation.hmso.gov.uk/acts/acts2001/20010023.htm.
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.
UK Government (2002). Medical Devices Regulations 2002. London: The Stationery Office. Available online at www.opsi.gov.uk/si/si2002/20020618.htm.
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/DearColleagueLettersArticle/fs/en?CONTENT_ID=4005488&chk=iwH9UG.
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.
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.
UK Government (2004c). Human Tissue Act. London: The Stationery Office. Available online at www.opsi.gov.uk/acts/acts2004/20040030.htm.
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.
UK Government (2005b). Mental Capacity Act. London: The Stationery Office. Available online at www.opsi.gov.uk/acts/acts2005/20050009.htm.
UK Government (2005c). Disability Discrimination Act. London: The Stationery Office. Available online at www.opsi.gov.uk/ACTS/acts2005/20050013.htm.
UK Government and Association of British Insurers (2005). Concordat and Moratorium on Genetics and Insurance. Available online at www.dh.gov.uk/assetRoot/04/10/60/50/04106050.pdf.
UK Patent Office (2003). Inventions Involving Human Embryonic Stem Cells. Available online at www.patent.gov.uk/patent/notices/practice/stemcells.htm.
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.
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.
UK Stem Cell Initiative (2005). Report and Recommendations. Available online at www.advisorybodies.doh.gov.uk/uksci/uksci-reportnov05.pdf.
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.
UNESCO (2003). International Declaration on Human Genetic Data. Available online at unesdoc.unesco.org/images/0013/001361/136112eb.pdf.
UNESCO (2005). International Declaration on Bioethics and Human Rights. Available online at portal.unesco.org/shs/en/file_download.php/46133e1f4691e4c6e57566763d474a4dBioethicsDeclaration_EN.pdf.
UNESCO International Bioethics Committee (2000). Report on Confidentiality and Genetic Data. Available online at http://portal.unesco.org/shs/en/file_download.php/48de04a5e6de8bc4966add86540d6c71Confidentiality_en.pdf.
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.
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.
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.
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.
US Congress (1990). Americans with Disabilities Act of 1990. Available online at www.usdoj.gov/crt/ada/pubs/ada.txt.
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/.
US Congress (2002). Standards for Privacy of Individually Identifiable Health Information. Final rule. Available online at www.hhs.gov/ocr/hipaa/privrulepd.pdf.
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.
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.
US National Bioethics Advisory Commission (1997). Cloning Human Beings Report and Recommendations. Available onling at www.georgetown.edu/research/nrcbl/nbac/pubscloning1/cloning.pdf.
US President (2000). Executive Order to Prohibit Discrimination in Federal Employment Based on Genetic Information. Available online at www.genome.gov/10002084.
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.
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.CrossRef
Overwalle, G., Zimmern, E., Ver beure, B. and Matthijs, G. (2006). Models for facilitating access to patents on genetic inventions. Nat Rev. Genet. 7, 143–8.CrossRefGoogle ScholarPubMed
Rijn, M. J., Duijn, C. M. and Slooter, A. J. (2005). Impact of generic testing on complex diseases. Eur. J. Epidemiol. 20, 383–8.CrossRefGoogle Scholar
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.CrossRefGoogle Scholar
Wacholder, S., Rothman, N. and Caporaso, N. (2000). Population stratification in epidemiologic studies of common genetic variants and cancer: quantification of bias. J. Natl. Cancer Inst. 92, 1151–8.CrossRefGoogle Scholar
Wacholder, S., Garcia-Closas, M. and Rothman, N. (2002). Study of genes and environmental factors in complex diseases. Lancet 359, 1155–6.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.
Wanless, D. (2004). Securing Good Health for the Whole Population. Available online at www.hm-treasury.gov.uk/consultations_and_legislation/wanless/consult_wanless03_index.cfm.
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.CrossRefGoogle ScholarPubMed
Warnock, M. (1984). Report of the Committee of Inquiry into Human Fertilisation and Embryology. London: The Stationery Office.Google Scholar
Waters, M. D. and Fostel, J. M. (2004). Toxicogenomics and systems toxicology: aims and prospects. Nat. Rev. Genet. 5, 936–48.CrossRefGoogle ScholarPubMed
Weber, W. W. (1997). Pharmacogenetics. Oxford: Oxford University Press.Google Scholar
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.CrossRefGoogle ScholarPubMed
Weeraratna, A. T., Nagel, J. E., Mello-Coelho, V. and Taub, D. D. (2004). Gene expression profiling: from microarrays to medicine. J. Clin. Immunol. 24, 213–24.CrossRefGoogle ScholarPubMed
Wellcome Trust (2004a). Human Tissue Bill – second reading, 15 January 2004. Available online at www.wellcome.ac.uk/doc_wtd002742.html.
Wellcome Trust (2004b). Public Health Sciences: Challenges and Opportunities. Available online at www.wellcome.ac.uk/assets/wtd003191.pdf.
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: meta-analysis of 43 studies. Lancet 363, 689–95.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
White, K. L. (1991). Healing the Schism: Epidemiology, Medicine, and the Public's Health. New York: Springer-Verlag.CrossRefGoogle Scholar
Willett, W. C. (2002). Balancing life-style and genomics research for disease prevention. Science 296, 695–8.CrossRefGoogle ScholarPubMed
Williams, P. and Clow, S. eds. (1999). Genomics Healthcare and Public Policy. London: Office of Health Economics.Google Scholar
Wilson, J. M. G. and Jungner, G. (1968). Principles and Practice of Screening for Disease. Public health paper No. 34. Geneva: World Health Organization.
Wolf, C. R., Smith, G. and Smith, R. L. (2000). Science, medicine and the future: pharmacogenetics. BMJ 320, 987–90.CrossRefGoogle ScholarPubMed
Wolffe, A. P. and Matzke, M. A. (1999). Epigenetics: regulation through repression. Science 286, 481–5.CrossRefGoogle ScholarPubMed
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.
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.
World Health Organization (2002). Human Genetic Technologies. Implications for Preventive Health Care. Geneva: World Health Organization.
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.
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.
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.
World Health Organization Advisory Committee on Health Research (2002). Genomics and World Health. Geneva: World Health Organization.
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.
World Medical Association (2002). Declaration on Ethical Considerations Regarding Health Databases. Available online at www.wma.net/e/policy/d1.htm.
World Medical Association (2005). Statement on Genetics and Medicine. Available online at www.wma.net/e/policy/g11.htm.
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.
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).CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Zerhouni, E. A. (2005). Translational and clinical science – time for a new vision. N. Engl. J. Med. 353, 1621–3.CrossRefGoogle ScholarPubMed
Zimmern, R. L. (2001a). Review. Community Genet. 4, 60.Google Scholar
Zimmern, R. L. (2001b). What is genetic information: whose hands on your genes?Genet. Law Monitor 1, 9–13.Google Scholar
Zimmern, R. L. (2003). Public health genetics. In Encyclopedia of the Human Genome, ed. Cooper, D. N.. London: Macmillan Publishers Ltd., Nature Publishing Group.Google Scholar
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.Google Scholar
Zimmern, R. L. and Stewart, A. (2006). Genetics in disease prevention. In The Oxford Handbook of Public Health Practice, eds. Pencheon, D.et al. Oxford: Oxford University Press.
Academy of Medical Sciences pages on the Human Tissue Act 2004 www.acmedsci.ac.uk/p48prid34.html
Advisory Committee on Genetic Testing archived web pages www.advisorybodies.doh.gov.uk/genetics/acgt/index.htm
American College of Medical Genetics policy statements and practice guidelines www.acmg.net/resources/policy-list.asp
American Society of Human Genetics policy statements genetics.faseb.org/genetics/ashg/pubs/003.shtml
Association of British Insurers www.abi.org.uk
Bioethics Today www.bioethics-today.org/
BioethicsWeb bioethicsweb.ac.uk/
BioNews www.progress.org.uk/News/
Biotechnology and Biological Sciences Research Council www.bbsrc.ac.uk
Blazing a Genetic Trail. Available from the Howard Hughes Medical Institute at www.hhmi.org/genetictrail
British Association for the Advancement of Science www.the-ba.net/the-ba/
British Society for Human Genetics www.bshg.org.uk
British Society for Human Genetics documents and publications www.bshg.org.uk/documents/official_documents.htm
Central Office for Research Ethics Committees (COREC) www.corec.org.uk/
CLIMB: Children Living with Metabolic Disease www.climb.org.uk/
Clinical Laboratory Improvement Amendments program (US) www.cms.hhs.gov/clia/
Clinical Molecular Genetics Society www.cmgs.org/new_cmgs/
Clinical Pathology (UK) Accreditation Ltd www.cpa-uk.co.uk/
Commission for Patient and Public Involvement in Health www.cppih.org/
Contact a Family www.cafamily.org.uk/
COPUS www.copus.org.uk/
Council of Europe www.coe.int/DefaultEN.asp
Department of Energy (US). Human Genome Project Information website. Gene Testing. www.ornl.gov/sci/techresources/Human_Genome/medicine/genetest.shtml
Department of Energy (US). Human Genome Project Information website. Gene Therapy. www.ornl.gov/sci/techresources/Human_Genome/medicine/genetherapy.shtml
Department of Health Genetics pages www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCareTopics/Genetics/GeneticsGeneralInformation/fs/en
Department of Health Genetics, Embryology and Assisted Conception Branch www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCareTopics/Genetics/GeneticsGeneralInformation/GeneticsGeneralArticle/fs/en?CONTENT_ID=4016202&chk=K6kI4B
Department of Health, Health Services Research Programme in Genetics www.genres.org.uk/hsrp/projects.htm
Department of Health and Human Resources (US), Access Excellence Resource Center. Understanding Gene Testing. www.accessexcellence.org/AE/AEPC/NIH/index.html
Department of Health web pages on patient confidentiality and access to health records www.dh.gov.uk/PolicyAndGuidance/InformationPolicy/PatientConfidentialityAndCaldicottGuardians/fs/en
Department of Health web pages on the Human Tissue Act 2004 www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCareTopics/Tissue/TissueGeneralInformation/TissueGeneralArticle/fs/en?CONTENT_ID=4102169&chk=7yP5JQ
Department of Health web pages on the Mental Capacity Act 2005 www.dh.gov.uk/PublicationsAndStatistics/Bulletins/ChiefExecutiveBulletin/ChiefExecutiveBulletinArticle/fs/en?CONTENT_ID=4108436&chk=z0Ds8/
Department of Trade and Industry web pages on science and technology www.dti.gov.uk/industries_science_technology.html
DNA Learning Centre (Cold Spring Harbor, US) website DNA From the Beginningwww.dnaftb.org/dnaftb/index.html
Dolan DNA Learning Center, Cold Spring Harbor Laboratory. Eugenics archive www.eugenicsarchive.org/eugenics/
ESRC Genomics Network www.genomicsforum.ac.uk/default.aspx?pageId=43
Ethox Centre www.ethox.org.uk/
European Bioinformatics Insitute www.ebi.ac.uk
European Commission pages on plans for the Seventh Framework Programme for Research europa.eu.int/comm/research/future/themes/index_en.cfm
European Commission DG Enterprise and Industry website pages on advanced therapies at http://ec.europa.eu/enterprise/pharmaceuticals/advtherapies/index.htm
European Group on Ethics in Science and New Technologies http://ec.europa.eu/european_group_ethics/index_en.htm
European Medicines Agency www.emea.eu.int/home.htm
European Molecular Genetics Quality Network www1.emqn.org/index.html
European Nutrigenomics Organisation www.nugo.org
European Patent Office www.european-patent-office.org/index.en.php
European Society of Human Genetics public policy pages www.eshg.org/PPPC.htm
European Society of Human Genetics www.eshg.org/
European Union Sixth Framework Programme for Research http://cordis.europa.eu/fp6/dc/index.cfm?fuseaction=UserSite.FP6HomePage
GeneCards™ bioinformatics.weizmann.ac.il/cards
Generation Scotland project www.generationscotland.org
Genes and Disease www.ncbi.nlm.nih.gov/disease/
GeneTests www.geneclinics.org
Gene Therapy Advisory Committee www.advisorybodies.doh.gov.uk/genetics/gtac/
Genetic Interest Group www.gig.org.uk/index.html
Genetic Science Learning Center website from the University of Utah in the US gslc.genetics.utah.edu/
Genetics and Insurance Committee www.advisorybodies.doh.gov.uk/genetics/gaic/
Genetics Commissioning Advisory Group www.dh.gov.uk/PolicyAndGuidance/HealthAndSocial CareTopics/Genetics/GeneticsGeneralInformation/GeneticsGeneralArticle/fs/en?CONTENT_ID=4117687&chk=ecpwCW
Genetics Home Reference ghr.nlm.nih.gov
Genome News Network www.genomenewsnetwork.org
Genome News Network. A Quick Guide to Sequenced Genomes. www.genomenewsnetwork.org/resources/sequenced_genomes/genome_guide_p1.shtml
GRaPH Int (Genome based Research and Population Health International Network) www.graphint.org
Guys and St. Thomas' NHS Trust. Tay Sachs programme. http://www.guysandstthomas.nhs.uk/services/managednetworks/childrens/geneticscentre/taysachscarriertesting.aspx
Health Technology Assessment programme www.ncchta.org/
House of Commons Select Committee on Science and Technology www.parliament.uk/parliamentary_committees/science_and_technology_committee.cfm
House of Lords Select Committee on Science and Technology www.parliament.uk/parliamentary_committees/lords_s_t_select.cfm
HuGENet (Human Genome Epidemiology Network) www.cdc.gov/genomics/hugenet
Human Epigenome Consortium Project www.epigenome.org/
Human Fertilisation and Embryology Authority www.hfea.gov.uk
Human Genetics Advisory Commission archived web pages www.advisorybodies.doh.gov.uk/hgac/index.html
Human Genetics Commission www.hgc.gov.uk
Human Genetics Commission web information pages on genetics and employment www.hgc.gov.uk/Client/Content_wide.asp?ContentId=123
Human Genetics Commission web information pages on intellectual property and genetics www.hgc.gov.uk/Client/Content.asp?ContentId=362
Human Genome Organisation (HUGO) ethics committee web pages www.hugo-international.org/committee_ethics_info.htm
Human Genome Program, US Department of Energy www.ornl.gov/sci/techresources/Human_Genome/home.shtml
Human Proteome Organisation www.hupo.org/
Human Tissue Authority www.hta.gov.uk/
HumGen database www.humgen.umontreal.ca/int/index.cfm?lang=1
Institute for the Study of Genetics, Biorisks and Society web pages on BiDil www.nottingham.ac.uk/igbis/reg/bidil.htm#scientific
Journal of Gene Medicinewww.wiley.co.uk/genmed/clinical
Kennedy Institute of Ethics National Information Resource on Ethics and Human Genetics at http://www.georgetown.edu/research/nrcbl/nirehg/index.htm.
Khoury, M. J., Beskow, L. and Gwinn, M. Making The Vision of Genomic Medicine A Reality: The Need for Public Health Research in The 21stCentury. www.cdc.gov/genomics/info/factshts/vision.htm
London IDEAS Department of Health Familial Hypercholesterolaemia Cascade Testing Audit www.fhcascade.org.uk/
Medical Research Council www.mrc.ac.uk
Medical Research Council web pages on the Human Tissue Act 2004 www.mrc.ac.uk/www.mrc.ac.uk/public-human_tissue_consultation.htm
Medicines and Healthcare Products Regulatory Agency www.mhra.gov.uk/home/idcplg?IdcService=SS_GET_PAGE&nodeId=5
Medicines and Healthcare Products Regulatory Agency pages on clinical trials regulation www.mhra.gov.uk/home/idcplg?IdcService=SS_GET_PAGE&nodeId=716
Michigan Center for Genomics and Public Health www.sph.umich.edu/genomics/
National Coalition for Health Professional Education in Genetics www.nchpeg.org/
National Genetics Reference Laboratories www.ngrl.org.uk/Pages/index.htm
National Human Genome Research Institute information about the Human Genome Project www.genome.gov/10001772
National Institute of Environmental Health Sciences (US). Environmental Genome Project. www.niehs.nih.gov/envgenom/
National Institute for Health and Clinical Excellence www.nice.org.uk
National Library for Health's specialist library for clinical genetics (GenePool) www.library.nhs.uk/genepool/
National Service Frameworks, Department of Health website www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCareTopics/fs/en#5295976
Nature Genome Gateway www.nature.com/genomics/
NHGRI health site www.genome.gov/Health
NHS Health Technology Assessment Programme www.hta.nhsweb.nhs.uk/
NHS Institute for Innovation and Improvement www.institute.nhs.uk/default.htm
NHS National Genetics Education and Development Centre www.geneticseducation.nhs.uk/
NHS National Programme for Information Technology (Connecting for Health) www.connectingforhealth.nhs.uk/
NHS Sickle Cell and Thalassaemia Screening Programme www.kcl-phs.org.uk/haemscreening/
North Carolina Center for Genomics and Public Health www.sph.unc.edu/nccgph/
Office of Genomics and Disease Prevention, Centers for Disease Control and Prevention, Atlanta, USA www.cdc.gov/genomics
Office of Genomics and Disease Prevention, US Centers for Disease Control and Prevention. Family History for Preventive Medicine and Public Healthwww.cdc.gov/genomics/activities/famhx.htm
Office of Science and Technology www.ost.gov.uk/index_v4.htm
Office of Science and Technology Public Engagement with Science and Technology (PUSET) website www.dti.gov.uk/ost/ostbusiness/puset/puset.htm
Online Mendelian Inheritance in Man www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM
Patient Information Advisory Group www.advisorybodies.doh.gov.uk/piag/
PharmGKB The pharmacogenetics and pharmacogenomics knowledge base www.pharmgkb.org/
PHGEN (Public Health Genomics European Network) www.phgen.nrw.de/
Public Health Genetics Unit, Cambridge UK. www.phgu.org.uk
Public Health Genetics Unit online newsletter www.phgu.org.uk/newsletter.php
Public Population Project in Genomics (P3G Consortium) www.p3gconsortium.org/. The P3G Observatory pages may be accessed at www.p3gobservatory.org/welcome.do
Royal Institution of Great Britain www.ri.ac.uk/
Royal Society ‘Science in Society’ programme www.royalsoc.ac.uk/page.asp?id=1988
Screening Specialist Library. National Electronic Library for Health. www.libraries.nhs.uk/screening/
Scottish Executive web pages on the Adults with Incapacity (Scotland) Act 2000 www.scotland.gov.uk/Topics/Justice/Civil/16360/4927
Secretary's Advisory Committee on Genetic Testing (US) Archived pages available at www4.od.nih.gov/oba/sacgt.htm
Secretary's Advisory Committee on Genetics, Health and Society (US) www4.od.nih.gov/oba/sacghs/sacghsml.htm
UK Accreditation Service www.ukas.com/
UK Biobank www.biobank.ac.uk
UK Clinical Research Collaboration www.ukcrc.org/
UK Genetic Testing Network www.genetictestingnetwork.org.uk/
UK National Screening Committee www.nsc.nhs.uk/
UK Newborn Screening Programme Centre www.newbornscreening-bloodspot.org.uk/
UK Patent Office www.patent.gov.uk
UK Stem Cell Bank www.ukstemcellbank.org.uk
UNESCO bioethics web pages portal.unesco.org/shs/en/ev.php-URL_ ID=1372&URL_DO=DO_TOPIC&URL_SECTION=201.html
unique: Rare Chromosome Disorder Support Group www.rarechromo.org/
University of Washington Center for Genomics and Public Health depts.washington.edu/cgph/
Wellcome Trust Human Genome website www.wellcome.ac.uk/en/genome
Wellcome Trust Sanger Institute www.sanger.ac.uk/
World Health Organization Genomic Resource Centre. www.who.int/genomics/en/

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Note you can select to save to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

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Save book to Dropbox

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Dropbox.

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Save book to Google Drive

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Google Drive.

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