Scientific Activities

• SD Committees
• SD Working Groups
• SD Minutes
• Reference Materials
• Project Proposal Form
• SD Documents
• SD Yearly Publications of Interest
• Participation in External Programs and Joint Committees

Regional and National Guidelines & Reports

Council of Europe - Steering Committee on Bioethics (CDBI), "The protection of the human embryo in vitro" - Report by the Working Party on the Protection of the Human Embryo and Fetus (CDBI-CO-GT3), Strasbourg , June 19, 2003. http://www.coe.int/t/e/legal_affairs/legal_co-operation/bioethics/activities/human_embryo_and_foetus/CDBI-CO-GT3(2003)13E.pdf (date accessed: August 15, 2006)

Council of Europe, Working Party on Human Genetics (CDBI-CO-GT4), "Working Document on the Applications of Genetics for Health Purposes", Starsbourg, February 7, 2003, http://www.coe.int/T/E/Legal_Affairs/Legal_co-operation/Bioethics/Activities/Human_genetics/INF(2003)3e_genetics_working_doc.asp (date accessed: August 15, 2006)

Council of Europe , "Medical Examinations Preceding Employment and/or Private Insurance: A Proposal for European Guidelines", European Community, 1998, http://www.coe.int/T/E/Social_Cohesion/Health/Documentation/Medical%20examinations%20PUB%20English.asp(date accessed: August 15, 2006).

European Commission, Report from the Commission to the European Parliament, the Council, the Committee of the Regions and the European Economic and Social Committee. "Life sciences and biotechnology - A strategy for Europe third progress report and future orientations", Brussels , June 29, 2005 , http://europa.eu.int/eur-lex/lex/LexUriServ/site/en/com/2005/com2005_0286en01.pdf (date accessed : August 15, 2006).

European Commission - The Independent Expert Group, "Ethical, Legal and Social Aspects of Genetic Testing: Research, Development and Clinical Applications", Brussels , 2004, http://ec.europa.eu/research/conferences/2004/genetic/pdf/report_en.pdf(date accessed: August 15, 2006).

European Commission - The Independent Expert Group, "The 25 Recommendations on the Ethical, Legal and Social Implications of Genetic Testing", Brussels , 2004, http://ec.europa.eu/research/conferences/2004/genetic/pdf/recommendations_en.pdf (date accessed: August 15, 2006).

Data Protection Working Party, "Working Document on Genetic Data", Brussels , 17 mars 2004, http://ec.europa.eu/justice_home/fsj/privacy/docs/wpdocs/2004/wp91_en.pdf (date accessed: August 15, 2006).

European Group on Ethics in Science and New Technologies (EGE), "Opinion no.18 Ethical Aspects of Genetic Testing in the Workplace", Brussels, July 28, 2003, http://ec.europa.eu/european_group_ethics/publications/docs/avis18_compl_en.pdf (date accessed: August 15, 2006).

European Group on Ethics in Science and New Technologies (EGE), "Statement by the European Group on Ethics in Science and New Technologies on advertising genetic tests via the Internet", Brussels, February 24, 2003, http://europa.eu.int/rapid/pressReleasesAction.do?reference=IP/03/273&format=HTML&aged=0&language=EN&guiLanguage=en (date accessed: August 15, 2006).

European Group on Ethics in Science and New Technologies, "Opinion No.11 on the Ethical Aspects of Human Tissue Banking", (1999) 50:1 Int. Dig. Hlth. Leg. 118, http://ec.europa.eu/european_group_ethics/docs/avis11_en.pdf, (date accessed: August 15, 2006) .

European Parliament - Temporary Committee on Human Genetics and Other New Technologies in Modern Medicine, "Report on the Ethical, Legal, Economic and Social Implications of Human Genetics", Strasbourg, November 8, 2001 http://ec.europa.eu/research/biosociety/pdf/pe_genetics.pdf (date accessed: August 15, 2006).

European Society of Human Genetics (ESHG), "Provision of Genetic Services in Europe-Current Practices and Issues", Birmingham , January 1, 2001 , http://www.eshg.org/ESHGgeneticservicesbckgrnd.pdf (date accessed: August 15, 2006).

European Society of Human Genetics (ESHG), "Genetic Information and Testing in Insurance and Employment : Technical, Social and Ethical Issues", Birmingham , November 1, 2000 , (2003) 11:2 European Journal of Human Genetics , S11-S12, http://www.nature.com/ejhg/journal/v11/n2s/index.html (date accessed: August 15, 2006).

http://www.nature.com/ejhg/journal/v11/n2s/pdf/5201116a.pdf (date accessed: August 15, 2006).

European Society of Human Genetics (ESHG), "Population Genetic Screening Programmes - Technical, Social and Ethical Issues", (2003) 11:2 European Journal of Human Genetics, S5-S7, http://www.nature.com/ejhg/journal/v11/n2s/pdf/5201112a.pdf (date accessed: August 15, 2006).

European Society of Human Reproduction and Embryology, "PGD Consortium "Best Practice Guidelines for Clinical Preimplantation Genetic Diagnosis (PGD) and Preimplantation Genetic Screening (PGS)", (2005) 20: 1 Human Reproduction, 35-48, http://humrep.oxfordjournals.org/cgi/reprint/20/1/35 (date accessed: August 15, 2006).

European Society of Human Reproduction and Embryology (ESHRE), "Taskforce 5. Preimplantation genetic diagnosis", (2003) 18:3 Human Reproduction , 649-651, http://humrep.oxfordjournals.org/cgi/reprint/18/3/649 (date accessed: August 15, 2006).

European Society of Human Reproduction and Embryology (ESHRE), "Guidelines for counselling in infertility", 2002, ESHRE Monographs: Oxford University Press, Vol 2002 no 1, http://eshremonographs.oxfordjournals.org/content/vol2002/issue1/index.dtl#ARTICLES (date accessed: August 15, 2006). See also "Guidelines for counselling in infertility: outline version", Human Reproduction , Vol 16 no 6, 1301-1304, June 2001, http://humrep.oxfordjournals.org/cgi/content/full/16/6/1301 (date accessed: August 15, 2006).

European Society of Human Reproduction and Embryology (ESHRE), "I. The Moral Status of the Pre-implantation Embryo", (2001) 16 : 5 Human Reproduction, 1046-1048, http://humrep.oxfordjournals.org/cgi/content/full/16/5/1046 (date accessed : August 15, 2006).

European Trade Union Confederation (ETUC), "The European Trade Union Confederation's view on genetic testing and the workplace", Brussels , November 16, 2001 , http://hesa.etui-rehs.org/uk/newsevents/files/EGE-EN.pdf (date accessed: August 15, 2006).

European Trade Union Confederation, Response of the ETUC to the "Communication from the Commission. First stage consultation of social partners on the protection of workers' personal data", Bruxels, November 16, 2001 , http://hesa.etui-rehs.org/uk/newsevents/files/data-protection.pdf (date accessed: August 16, 2006).

Group of Advisers to the European Commission on the Ethical Implications of Biotechnology (GAEIB), "Opinion on Ethical Aspects of Prenatal Diagnosis, Opinion No. 6", February 20, 1995, http://www1.umn.edu/humanrts/instree/prenatalopinion.html (date accessed: August 16, 2006).

The European Association for Bioindustries (EuropaBio), "Human Medical Genetic Testing-A EuropaBio Position Paper", Brussels , May 2004, http://www.europabio.org/articles/article_317_EN.doc (date accessed: August 16, 2006).

Office of the data Protection Commissioner, "Data Protection Act 1998. Original Draft of the Code of Practice concerning the use of Personal Data in Employer/Employee Relationships", Cheshire , October 1, 2000 , http://www.fedee.com/dpcp.html (date accessed: August 16, 2006)

Euroscreen, "Genetic Screening and Testing : Towards Community Policy on Insurance, Commercialisation and Promoting Public Awarness" (EUROSCREEN 2) 1999, http://ec.europa.eu/research/biosociety/pdf/bmh4_ct96_1665.pdf (date accessed: August 16, 2006) 

Australia

Australia Government, Privacy Commissioner, "The Privacy Implications of Genetic Testing", Australia , September 1, 1996 , http://www.privacy.gov.au/publications/HRC_PRIVACY_PUBLICATION.pdf_file.p6_4_72.44.pdf (date accessed: August 16, 2006).

National Health and Medical Research Council (NHMRC), "Ethical Aspects of Human Genetic Testing : an Information Paper", Australia , 2000, http://www.nhmrc.gov.au/publications/synopses/e39syn.htm (date accessed: August 16, 2006).

Pdf document= http://www.nhmrc.gov.au/publications/_files/e39.pdf (date accessed: August 16, 2006).

Australian Competition and Consumer Commission (ACCC), "ACCC Decision Maintains Life Insurance Bar on Genetic Testing", December 8, 2003, http://www.accc.gov.au/content/index.phtml/itemId/417653 (date accessed: August 16, 2006).

Australian Competition and Consumer Commission (ACCC), "Genetic Testing for Life Insurance Purposes", August 9, 2000, http://www.accc.gov.au/content/index.phtml/itemId/87460 (date accessed: August 16, 2006).

Australian Consumers' Association (ACA), "ACA's Position on Gene Testing and Insurance", Marrickville, October 1, 2000, http://www.choice.com.au/viewArticle.aspx?id=101713&catId=100501&tid=100008&p=9&title=Access+denied%3a+Genetic+testing+and+your+insurance ) (date accessed: August 16, 2006).

Australian Law Reform Commission, "ALRC 99 - Genes and Ingenuity : Gene Patenting and Human Health", Sydney , August 31, 2004 , http://www.austlii.edu.au/au/other/alrc/publications/reports/99/ (date accessed : August 16, 2006)

Australian Law Reform Commission, "Gene Patenting and Human Health Discussion Paper 68", Sydney, January 1, 2004, http://www.austlii.edu.au/au/other/alrc/publications/dp/68/ (date accessed: August 16, 2006).

Australian Law Reform Commission, "ALRC 96, Essentially Yours: The Protection of Human Genetic Information in Australia ", Sydney , May 29, 2003 , http://beta.austlii.edu.au/au/other/alrc/publications/reports/96/(date accessed: August 16, 2006).

Australian Medical Association (AMA), "AMA Position Statement: Human Genetic Issues-1998, Revised 2000, 2002", Barton, January 1, 2002 , http://www.ama.com.au/web.nsf/doc/SHED-5G7DAB (date accessed: August 16, 2006).

Human Genetics Society of Australasia (HGSA), "HGSA Policy. Predictive Testing in Children and Adolescents", Australia , April 1, 2005 . http://hgsa.com.au/images/UserFiles/Attachments/Predictivetesting(General)APRIL2005.pdf (date accessed: August 16, 2006).

Human Genetics Society of Australia (HGSA), "Presymptomatic and Predictive Testing for Genetic Disorders", Australia , April 1, 2005 , http://hgsa.com.au/images/UserFiles/Attachments/PresymptomaticandPredictive
TestingforGeneticDisordersV22005.pdf.pdf (date accessed: August 16, 2006).

Human Genetics Society of Australasia (HGSA), "Joint HCSA/RANZCOG Prenatal Diagnosis Policy C-Obs 5", Alexandra, March, 2004, http://hgsa.com.au/images/UserFiles/Attachments/PrenaltaldiagnosispolicyC-Obs5Mar2004.pdf (date accessed: August 16, 2006). Can also be reached via RANZCOG website http://www.ranzcog.edu.au/publications/statements/C-obs5.pdf (date accessed: August 16, 2006).

HGSA, "Certification in Genetic Couselling", Alexandra, July 2001, http://hgsa.com.au/images/UserFiles/Attachments/Predictive%20Genetic%20Testing%20and%20Insurance.doc (date accessed: August 16, 2006).

Human Genetics Society of Australasia (HGSA), "Predictive Genetic Testing and Insurance", Australia , 1999, http://hgsa.com.au/images/UserFiles/Attachments/Predictive%20Genetic%20Testing%20and%20Insurance.doc (date accessed: August 16, 2006).

Human Genetics Society of Australasia (HGSA), "Privacy Implications of Genetic Testing", Sydney, 1999, http://hgsa.com.au/images/UserFiles/Attachments/PrivacyImplicationsofGeneticTesting1.pdf (date accessed: August 16, 2006).

Investment and Financial Services Association Limited, "IFSA Standard No. 11 Genetic Testing Policy", Sydney , January 1, 2002 , http://www.ifsa.com.au/public/content/ViewCategory.aspx?id=70 (date accessed: August 16, 2006)

The Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG), "Joint HGSA/RANZCOG Prenatal Diagnosis Policy", Alexandra, March, 2004, http://www.ranzcog.edu.au/publications/statements/C-obs5.pdf(date accessed: August 16, 2006). Can also be reached via the HGSA website http://hgsa.com.au/images/UserFiles/Attachments/PrenaltaldiagnosispolicyC-Obs5Mar2004.pdf (date accessed: August 16, 2006).

Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG), Screening in Pregnancy (2.2a), Melbourne , June 1, 2000 , "Antenatal Screening Tests, C-Obs 3", November 2004. http://www.ranzcog.edu.au/publications/statements/C-obs3.pdf (date accessed : August 16, 2006).

Victorian Law Reform Commission, "Workplace Privacy - Final Report", Melbourne , October 2005, http://www.lawreform.vic.gov.au/CA256902000FE154/Lookup/Privacy/$file/Privacy%20Final%20Report.pdf (date accessed: August 16, 2006).

 

Belgium

Belgian Society of Human Genetics, "Guidelines for predictive genetic testing for late onset disorders", Belgium , March 1, 2003 , http://www.beshg.be/guidelines.htm (date accessed: August 16, 2006)

Comit� consultatif de Bio�thique de Belgique, � Avis (No.3) du 17 novembre 1997 relatif au choix du sexe �, Bruxelles, 17 novembre 1997, https://portal.health.fgov.be/portal/page?_pageid=56,512451&_dad=portal&_schema=PORTAL&p_back_url=https%3A%2F%2Fportal.health.fgov.be%2Fportal%2Fpage%3F_pageid%3D56%2C512676%26_dad%3Dportal%26_schema%3DPORTAL (page consult�e le : August 16, 2006).

 

Canada

Alzheimer Society of Canada , "Alzheimer Care: Ethical Guidelines, Genetic Testing", Toronto , October 7, 2003 , http://www.alzheimer.ca/english/care/ethics-genetictest.htm (date accessed: August 16, 2006).

Alzheimer Society of Canada , "Alzheimer Care: Ethical Guidelines, Communicating the Diagnosis", Toronto , January 4, 2004 , http://www.alzheimer.ca/english/care/ethics-communicate.htm (date accessed: August 16, 2006).

Canadian College of Medical Geneticists (CCMG), "CCMG Molecular Genetics Guidelines", Canada , September 21, 2002 , http://ccmg.medical.org/pdf/ccmg_mol_gen.pdf (date accessed: August 16, 2006).

Canadian College of Medical Geneticists (CCMG), "Position Statement. Genetic Testing of Children", Ottawa , November 26, 2000, http://ccmg.medical.org/pdf/ccmg_children.pdf (date accessed: August 16, 2006).

Canadian College of Medical Geneticists (CCMG), "Policy Statement on Prenatal Paternity Testing", Ottawa , November 26, 1999, http://ccmg.medical.org/pdf/ccmg_paternity.pdf (date accessed: August 16, 2006).

Canadian College of Medical Geneticists (CCMG), "CF Testing / Screening Statement", Ottawa , September 26, 1999 , http://ccmg.medical.org/pdf/ccmg_cf.pdf (date accessed: August 16, 2006).

Canadian College of Medical Geneticists (CCMG), "Policy Statement Concerning DNA Banking and Molecular Genetic Diagnosis", (1991) 14:4 Clin. Invest. Med. 363-365, http://ccmg.medical.org/pdf/ccmg_dnabank.pdf (date accessed: August 16, 2006).

Canadian Coordinating Office for Health Technology Assessment (CCOHTA), "Technology Report, Issue 4, Predictive Genetic Testing for Breast and Prostate Cancer", Canada , January, 1999, http://www.ccohta.ca/publications/pdf/genetics_tr_e.pdf (date accessed: August 16, 2006).

Canadian Cystic Fibrosis Foundation, "Cystic Fibrosis: confidentiality and genetic information", March 1, 2002 , http://www.cysticfibrosis.ca/pdf/ConfidentialiyE2002.pdf (date accessed: August 16, 2006).

Canadian Down Syndrome Society (CDSS), "Position Statement on Prenatal genetic Testing", Calgary , May 1, 1999 , Updated November 2003, http://www.cdss.ca/en/main.htm# (date accessed : August 16, 2006).

Canadian Genetics and Life Insurance Task Force, "Genetics and Life Insurance in Canada : Points to Consider", (2004) (2004) 170:9 Canadian Medical Association Journal CMAJ , http://www.cmaj.ca/cgi/data/170/9/1421/DC2/1 (date accessed : August 16, 2006).

Canadian Institute of Actuaries, "Report of the Task Force on Genetics", Ottawa , April 1, 2001 , http://www.actuaries.ca/members/publications/2001/20126e.pdf (date accessed : August 16, 2006).

Canadian Institute of Actuaries, "Statement on Genetic Testing and Insurance", 2000, November 13, 2000, http://www.actuaries.ca/members/publications/2000/20065e.pdf (date accessed : August 16, 2006)

Canadian Life and Health Insurance Association Inc, CLHIA Position Statement on Genetic Testing, "Genetic Testing: Industry Position", August 2000 (Updated January 1, 2003), http://www.clhia.ca/download/genetic_testing_ind_posn.pdf (date accessed: August 16, 2006).

Canadian Paediatric Society, "Guidelines for Genetic Testing of Healthy Children", (2003) 8:1 Paediatr Child Health , 42-45, http://www.cps.ca/english/statements/B/b03-01.pdf (date accessed: August 16, 2006).

Privacy Commissioner of Canada , "Genetic Testing and Privacy", Canada , 1995, http://www.privcom.gc.ca/information/02_05_11_e.pdf (date accessed: August 16, 2006).

Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada (IRSC, CRSNG and CRSH), "Tri-Council Policy Statement - Ethical Conduct for Research Involving Humans", 1998 (with 2000, 2002, 2005 amendments), Ottawa, October 2005, http://www.pre.ethics.gc.ca/english/pdf/TCPS%20October%202005_E.pdf (date accessed: August 16, 2006).

 

Denmark

Danish Council of Ethics (Det Etiske Rad), "Microinsemination and Pre-Implantation Genetic Diagnosis (PGD)", Copenhagen , 2003, http://etiskraad.dk/sw1771.asp (date accessed: August 16, 2006).

Danish Council of Ethics, "Genetic investigation of Healthy Subjects - Report on Presymptomatic Genetic Testing", Copenhague, Danemark, http://www.etiskraad.dk/graphics/03_udgivelser/engelske_publikationer/genetic_engineering
/genetic/INDEX.HTM (date accessed: August 16, 2006).

 

France

French Government, "Order establishing technical groups on screening for certain cancers", May 1, 1999 , 3 Journal officiel de la R�publique fran�aise, lois et d�crets, p. 199. http://admi.net/jo/1999/00199.html (date accessed: August 16, 2006).

National Consultative Ethics Committee for Health and Life Sciences (CCNE), "Opinion (No. 83) - Generalised Prenatal Screening for Cystic Fibrosis", Paris , March 25, 2004 , http://www.ccne-ethique.fr/english/pdf/avis083.pdf (date accessed: August 16, 2006).

National Consultative Ethics Committee for Health and Life Sciences (CCNE), "Opinion (No. 76) Regarding the Obligation to Disclose Genetic Information of Concern to the Family in the Event of Medical Necessity", April 24, 2003, http://www.ccne-ethique.fr/english/pdf/avis076.pdf (date accessed: August 16, 2006).

National Consultative Ethics Committee for Health and Life Sciences (CCNE), "Opinion (No. 72) Reflections Concerning an Extension of Preimplantation Genetic Diagnosis", Paris, July 4, 2002, http://www.ccne-ethique.fr/english/pdf/avis068.pdf(date accessed : August 16, 2006).

National Consultative Ethics Committee for Health and Life Sciences (CCNE), "Opinion (No. 68) Congenital Handicaps and Prejudice", Paris, May 29, 2001, http://www.ccne-ethique.fr/english/avis/a_046.htm (date accessed : August 16, 2006)

National Consultative Ethics Committee for Health and Life Sciences (CCNE), Opinion (No. 46) and recommendations on "Genetics and medecine: from prediction to prevention", Paris , October 30, 1995 , http://www.ccne-ethique.fr/english/pdf/avis033.pdf (date accessed: August 16, 2006).

National Consultative Ethics Committee for Health and Life Sciences (CCNE), "Opinion (No. 33) Concerning the Identification of Patients Suffering from Glaucoma in France and on Chromosomal Location of the Causative Gene or Genes", Paris, January 19, 1993, http://http://www.ccne-ethique.fr/english/avis/a_046.htmwww.ccne-ethique.fr/english/pdf/avis025.pdf(date accessed : August 16, 2006).

National Consultative Ethics Committee for Health and Life Sciences (CCNE), "Opinion (No. 25) Regarding the Application of Genetic Testing to Individual Studies, Family Studies and Population Studies. (Problems Related to DNA "Banks", Cell "Banks" and Computerisation)", Paris , June 24, 1991 , http://www.ccne-ethique.fr/english/pdf/avis025.pdf (date accessed : August 16, 2006).

National Consultative Ethics Committee for Health and Life Sciences (CCNE), "Opinion (No. 17) Concerning the Dissemination of DNA Analysis Identification Techniques (Genetic Fingerprinting)", December 15, 1989 , http://www.ccne-ethique.fr/english/pdf/avis017.pdf (date accessed : August 16, 2006).

National Consultative Ethics Committee for Health and Life Sciences (CCNE), "Opinion (No. 5) on Problems Raised by Prenatal and Perinatal Diagnosis", Paris , May 13, 1985 , http://www.ccne-ethique.fr/english/pdf/avis005.pdf (date accessed : August 16, 2006).

 

Germany

Deutsche Forschungsgemeinschaft/German Research Foundation, (Senate Commission on Genetic Research), "Predictive Genetic Diagnosis - Scientific Background, Practical and Social Implementation", Bonn , March 27, 2003 , http://www.dfg.de/aktuelles_presse/reden_stellungnahmen/2003/download/predictive
_genetic_diagnosis.pdf (date accessed: August 16, 2006).

German National Ethics Council, "Predictive health information in pre-employment medical examinations", Berlin , August 16, 2005 , http://www.ethikrat.org/_english/publications/Opinion_Predictive-health-information.pdf (date accessed: August 16, 2006).

German National Ethics Council, "Genetic diagnosis before and during pregnancy", Berlin , January 23, 2003 , http://www.ethikrat.org/_english/publications/Stn_PID_engl.pdf (date accessed: August 16, 2006)

German Society of Human Genetics (Committee for Public Relations and Ethical Issues), "Statement on Genetic Diagnosis in Children and Adolescents", Germany , 1995, http://www.medgenetik.de/sonderdruck/en/Genetic_diagnosis_in_children.pdf (date accessed: August 16, 2006).

German Society of Human Genetics (Committee for Public Relations and Ethical Issues), "Statement on the Discovery of the Breast Cancer Gene BRCA1", Germany , 1995, http://www.medgenetik.de/sonderdruck/en/BRCA.pdf (date accessed: August 16, 2006).

German Society of Human Genetics (Committee for Public Relations and Ethical Issues), "Statement on Prenatal Paternity Testing", Germany , 1992, http://www.medgenetik.de/sonderdruck/en/BRCA.pdf (date accessed: August 16, 2006).

German Society of Human Genetics (Committee for Public Relations and Ethical Issues), "Statement on Population Screening for Heterozygotes", Germany , 1991, http://www.medgenetik.de/sonderdruck/en/Prenatal_paternity_testing.pdf (date accessed: August 16, 2006).

German Society of Human Genetics (Committee for Public Relations and Ethical Issues), "Statement on Postnatal Predictive Genetic Diagnosis", Germany , 1991, http://www.medgenetik.de/sonderdruck/en/Heterozygote_screening.pdf (date accessed: August 16, 2006).

German Society of Human Genetics (Committee for Public Relations and Ethical Issues), "Statement on the Prenatal Diagnosis of Sex", Germany , 1990, http://www.medgenetik.de/sonderdruck/en/Prenatal_sex_selection.pdf (date accessed: August 16, 2006).

German Society of Human Genetics (Committee for Public Relations and Ethical Issues), "Statement of the German Society of Human Genetics", Germany , 1989, http://www.medgenetik.de/sonderdruck/en/General_statement_1989.pdf (date accessed: August 16, 2006).

 

Greece

National Bioethics Commission, "Recommendation on the Collection and Use of Genetic Data", Athens , September 16, 2002 , http://www.bioethics.gr/media/pdf/recommendations/recom_genetic_data_eng.pdf (date accessed: August 16, 2006).

 

India

Government of India : Department of Biotechnology, "Ethical Policies on the Human Genome, Genetic Research & Services", New Delhi , June 1, 2001 , http://dbtindia.nic.in/policy/ethical.html (date accessed: August 16, 2006).

Indian Council of Medical Research (ICMR), "Statement of Specific Principles on Human Genetics Research", in "Ethical Guidelines for Biomedical Research on Human Subjects", p39-50, New Delhi , 2000, http://icmr.nic.in/ethical.pdf (date accessed : August 17, 2006).

 

Italy

National Bioethics Committee ( Italy ), "Bioethical Guidelines for Genetic Testing", November 19, 1999 , http://www.palazzochigi.it/bioetica/eng/opinions/genetictest.html (date accessed : August 17, 2006).

 

Japan

Japan Society of Human Genetics, "Guidelines for Genetic Testing", August, 2003, English translation October, 2004, http://jshg.jp/e/index_e.htm (date accessed: August 17, 2006).

Japan Society of Human Genetics, "Guidelines for Genetic Testing, Using DNA Analysis", September 1995. http://jshg.jp/introduction/notifications/19950900e.htm (date accessed: August 17, 2006). Can also be reached via http://jshg.jp/e/index_e.htm (date accessed: August 17, 2006).

(September 1996) 6:5 Eubios Journal of Asian and International Bioethics , 137, http://www2.unescobkk.org/eubios/EJ64/EJ64I.htm (date accessed: August 17, 2006).

Japan Society of Human Genetics, "Guidelines for Genetic Counseling and Prenatal Diagnosis", December 1994, http://jshg.jp/introduction/notifications/19941200e.htm (date accessed: August 17, 2006). Can also be reached via http://jshg.jp/e/index_e.htm (date accessed: August 17, 2006).

Guidelines for Genetic Testing using DNA analysis. September 1996; 6:5 Eubios Journal of Asian and International Bioethics,138, http://www2.unescobkk.org/eubios/EJ64/EJ64I.htm (date accessed: August 17, 2006).

Eubios Ethics Institute, "Ethical Guidelines for Analytical Research on the Human Genome/Genes", Tokyo , March 29, 2001 , http://www2.unescobkk.org/eubios/eghgr.htm (date accessed: August 17, 2006).

 

Latvia

Latvia/Government, "Human Genome Research Law", July 3, 2002 , http://bmc.biomed.lu.lv/gene/print/Human%20Genome%20Research%20Law,%20Latvia.doc (date accessed: August 17, 2006) (Unofficial translation by the Biomedical Research and Study Centre)

Netherlands

Health Council of the Netherlands , "Neonatal Screening", The Hague , August 22, 2005 , http://www.gr.nl/adviezen.php?ID=1258 (general; date accessed: August 17, 2006).

PDF Text = http://www.gr.nl/pdf.php?ID=1258&p=1 (date accessed: August 17, 2006)

Health Council of the Netherlands , "Clinical Genetic Testing and Counselling", The Hague , May 27, 1999 , http://www.gr.nl/adviezen.php?ID=482 (date accessed: August 17, 2006).

Health Council of the Netherlands , "Heredity: Science and Society - On the Possibilities and Limits of Genetic Testing and Gene Therapy", The Hague , December 29, 1989 , http://www.gr.nl/pdf.php?ID=720 (date accessed: August 17, 2006).

 

New Zealand

New Zealand , National Health Committee, National Advisory Committee on Health and Disability, "Molecular Genetic Testing in New Zealand " ( Wellington , NZ: National Advisory Committee on Health and Disability (National Health Committee), 2003), http://www.nhc.govt.nz/publications/genetics/genetictestingnz.pdf (date accessed: August 17, 2006).

 

Singapore

The Bioethics Advisory Committee, "Genetic Testing and Genetic Research", Singapore , November 2005, http://www.bioethics-singapore.org/resources/pdf/GT%20Report.pdf (date accessed: August 17, 2006).

National Medical Ethics Committee (Singapore/Government), "Ethical Guidelines for Gene Technology", Singapore , February 1, 2001 , http://www.moh.gov.sg/cmaweb/attachments/publication/3352285aef1r/GeneGuidelines.pdf , (date accessed : August 17, 2006).

 

South Africa

The Life Offices' Assocation of South Africa (LOA), "LOA Codes of Conduct (Chapter 20: Code on Genetic Testing)", Cape Town , November 20, 2001 , http://www.loa.co.za/modules.php?name=Content&pa=showpage&pid=44date accessed : August 17, 2006). PDF Text = http://www.loa.co.za/downloads/CodeOfConduct/Chapter20.pdf (date accessed : August 17, 2006).

 

Sweden

Swedish National Council on Medical Ethics, "Statement of opinion on pre-implantation genetic diagnosis", Stockholm , January 23, 2004 , http://www.smer.gov.se/english/opinion/pgd.eng.pdf (date accessed: August 17, 2006).

The Swedish National Council on Medical Ethics, "Re: Working Document on the Applications of Genetics for Health Purposes", Stockholm , Sweden , May 5, 2003 , http://www.smer.gov.se/english/opinion/genetics.htm (date accessed: August 17, 2006).

 

Switzerland

Swiss Society of Medical Genetics, "Best practice guidelines on reporting in molecular genetic diagnostic laboratories in Switzerland ", Berne , 2003, http://www.ssgm.ch/sections/pdf/current/publications/SSGM%20reporting%20guidelines%20dna%20v1.pdf (date accessed: August 17, 2006)

 

United Kingdom

Advisory Committee on Genetic Testing (ACGT), "Prenatal Genetic Testing Report for Consultation", London , February 25, 2000 , http://www.dh.gov.uk/assetRoot/04/01/43/93/04http://www.dh.gov.uk/assetRoot/04/01/
46/75/04014675.pdf014393.pdf (date accessed : August 17, 2006).

Advisory Committee on Genetic Testing (ACGT), "Report on Genetic Testing for Late Onset Disorders", London , July, 1998, http://www.dh.gov.uk/assetRoot/04/01/43/93/04014393.pdf (date accessed : August 17, 2006).

Advisory Committee on Genetic Testing (ACGT), "Code of Practice and Guidance on Human Genetic Testing Services Supplied Direct to the Public", London , September, 1997, http://www.dh.gov.uk/assetRoot/04/01/44/63/04014463.pdf (date accessed : August 17, 2006).

Association of British Insurer, British Medical Association, "Medical Information and Insurance", December 1, 2002 , http://www.abi.org.uk/Display/File/301/ABI+BMA_Guidelines_on_Medical_Info.pdf (date accessed : August 17, 2006)

UK Forum for Genetics and Insurance (UKFGI), Association of British Insurers (ABI), British Society for Human Genetics (BSHG), "Joint Statement on Genetics and Insurance Announced at the Royal Society on 24 April 2001", April 24, 2001, http://www.ukfgi.org.uk/joint%20statement%20abi,%20bshg,%20ukfgi%2024%2004%2001.htm (date accessed : August 17, 2006)

Association of British Insurers (ABI), "Genetic Testing - ABI Code of Practice", United Kingdom , 1999, http://www.abi.org.uk/Display/default.asp?Menu_ID=946&Menu_All=1,946,0&Child_ID=203 (date accessed : August 17, 2006)

British Medical Association (BMA), "Population Screening and Genetic Testing: A Briefing on Current Programmes and Technologies", London , August 2005, h ttp://www.bma.org.uk/ap.nsf/Content/Populationscreeninggenetictesting (date accessed: August 17, 2006).

PDF text = http://www.bma.org.uk/ap.nsf/AttachmentsByTitle/PDFscreeningbriefingsecond/$FILE/ScreeningBriefing2.pdf (date accessed: August 17, 2006).

The British Medical Association, "Infertility - Preimplantation Genetic Diagnosis with Tissue Typing", London , July 2004, http://www.bma.org.uk/ap.nsf/Content/EthicsBriefIssue68ARM2004~AssistedReproduction (date accessed : August 17, 2006).

Joint Committee on Medical Genetics (Royal College of Physicians, Brithish Society for Human Genetics, Royal College of Pathologists) and Genetics Interest Group, "Joint Committee on Medical Genetics and the Genetic Interest Group's Response to the Human Tissue Bill", London, September 7, 2004, http://www.gig.org.uk/gig/docs/humantissuebilljcmg.pdf (date accessed : August 17, 2006).

British Society for Human Genetics (BSHG), "Co-ordinated Arrangements for Genetic Testing for Rare Disorders", United Kingdom , 1998, http://www.bshg.org.uk/documents/official_docs/raredis.htm (date accessed : August 17, 2006).

Clinical Genetics Society (CGS), "The Genetic Testing of Children - Report of a Working Party of the Clinical Genetics Society", United Kingdom , March 1994, http://www.bshg.org.uk/documents/official_docs/testchil.htm(date accessed: August 17, 2006).

The Foresight Programme Healthcare Panel, "Health Care 2020", London , December 1, 2000 , http://www.foresight.gov.uk/previous_rounds/foresight_1999__2002/healthcare/reports
/healthcare_2020/Healthcare.pdf (date accessed: August 17, 2006).

Gene Therapy Advisory Committee (GTAC), "Code of Practice and Guidance on Genetic Paternity Testing Services", London , March 1, 2001 , http://www.dh.gov.uk/assetRoot/04/07/82/96/04078296.pdf (date accessed : August 17, 2006).

Human Genetics Advisory Commission (HGAC), "The Implications of Genetic Testing for Employment", London , June 1, 1999 , http://www.advisorybodies.doh.gov.uk/hgac/papers/papers_g/g_05.htm (date accessed : August 17, 2006).

Human Genetics Advisory Commission (HGAC), "The Implications of Genetic Testing for Insurance", London , December 17, 1997 , http://www.advisorybodies.doh.gov.uk/hgac/papers/papers_b.htm (date accessed : August 17, 2006).

Human Genetics Commission, "Making Babies: Reproductive Decisions and Genetic Technologies", London , January 2006, http://www.hgc.gov.uk/UploadDocs/DocPub/Document/Making%20Babies%20Report%20-%20final%20pdf.pdf (date accessed: August 17, 2006).

Human Genetics Commission, "Profiling the Newborn: a Prospective Gene Technology?", London , March 2005, http://www.hgc.gov.uk/UploadDocs/Contents/Documents/Final%20Draft%20of%20Profiling%20Newborn%20Report%2003%2005.pdf (date accessed: August 17, 2006).

The Human Genetics Commission, "Genes Direct - Ensuring the effective oversight of genetic tests supplied directly to the public", March 2003, http://www.hgc.gov.uk/UploadDocs/DocPub/Document/genesdirect_full.pdf (date accessed: August 17, 2006).

Human Genetics Commission, "Inside Information - Balancing Interests in the Use of Personal Genetic Data", London , May 1, 2002 , http://www.hgc.gov.uk/UploadDocs/DocPub/Document/insideinformation_summary.pdf (date accessed : August 17, 2006).

Human Genetics Commisssion, "Outcome of the Public Consultation on preimplantation Genetic Diagnosis", London , November 2001, http://www.hgc.gov.uk/UploadDocs/DocPub/Document/pgdoutcome.pdf (date accessed: August 17, 2006).

Human Genetics Commission (HGC), "Response to the Human Fertilisation and Embryology Authority on the Consultation on preimplantation genetic diagnosis", London , March 1, 2001 , http://www.hgc.gov.uk/UploadDocs/DocPub/Document/statement_pgd.pdf (date accessed : August 17, 2006).

Information Commissioner's Office (ICO), "Employment Practices Code", June 2005, Wilmslow, http://www.ico.gov.uk/ (date accessed: August 17, 2006).

Information Commissioner's Office (ICO), "The Employment Practices Code: Supplementary Guidance", Wilmslow, June 2005, http://www.ico.gov.uk/documentUploads/ICO_SuppGdnce.pdf (date accessed : August 17, 2006).

National Institute for Clinical Excellence (NICE), "Clinical guidelines for the classification and care of women at risk of familial breast cancer in primary, secondary and tertiary care", London , May, 2004, http://www.nice.org.uk/pdf/CG014Fullguideline.pdf (date accessed: August 17, 2006)

Joint Committee on Medical Genetics of the Royal College of Physicians, Royal College of Pathologists and British Society of Human Genetics, "Draft document for consultation. Consent and confidentiality in genetic practice: guidance on genetic testing and sharing genetic information", London , October 1, 2003 , http://www.bshg.org.uk/documents/official_docs/JCMG%20Consent%20Confid%20draft%20report%201003.pdf (date accessed: August 17, 2006)

Nuffield Trust Genetics Scenario Project, "Genetics and Health: Policy Issues for Genetic Science and their Implications for Health and Health Services", London , May 30, 2000 , http://www.archive.official-documents.co.uk/document/nuffield/policyf/genetics.htm (date accessed: August 17, 2006).

UK Cancer Family Study Group (UKCFSG), "Guidelines for a Genetic Risk based Approach to Advising Women with a Family History of Breast Cancer", (2000) 37 (3) Journal of medical Genetics, 203-209. http://jmg.bmjjournals.com/cgi/content/abstract/37/3/203 (date accessed: August 17, 2006)

United Kingdom / Department of Health, "Our Inheritance, our Future: Realising the Potential of Genetics in the NHS", London , June 2003, http://www.dh.gov.uk/assetRoot/04/01/92/39/04019239.pdf (date accessed: August 17, 2006).

University of Cambridge Institute of Public Health-Department of Public Health and Primary Care (PHPC), "My Very Own Medicine : What Must I Know ? Information Policy for Pharmacogenetics", Cambridge , 2003, http://www.phgu.org.uk/about_phgu/resources/pdf/HD1032%20CHR_MySery%20own%20Medic.pdf (date accessed: August 17, 2006).

United States

Aetna Inc., "Clinical Policy Bulletins: Genetic Testing", Hartford , April 22, 2005 , reviewed July 18, 2006 , http://www.aetna.com/cpb/data/CPBA0140.html (date accessed: August 17, 2006).

Alzheimer's Association, "Genetic Testing", San Diego , May 1st 1995 , http://www.alz.org/Advocacy/downloads/statements_genetictesting.pdf (date accessed: August 17, 2006).

American Academy of Pediatrics (AAP), "Ethical Issues With Genetic Testing in Pediatrics (RE9924)", (2001) 107:6 Pediatrics , 1451 [reaffirmed May 1, 2005, (2005) 115: 5 Pediatrics , 1438], http://www.alz.org/Advocacy/downloads/statements_genetictesting.pdf (date accessed : August 17, 2006).

American Academy of Pediatrics (AAP), "Prenatal Genetic Diagnosis for Pediatricians", Elk Grove village , June 1st, 1994 , (1994) 93:6 Pediatrics , 1010-1015, http://pediatrics.aappublications.org/cgi/content/abstract/93/6/1010 (date accessed: August 17, 2006).

American College of Medical Genetics (ACMG) - Laboratory Quality Assurance Committee, "Technical Standards and Guidelines: Molecular Genetic Testing for Ultra-Rare Disorders", (2005) 7:8 Genetics in Medicine , 571-583, http://www.acmg.net/resources/policies/Ultra_Rare_GIM_10_2005.pdf (date accessed: August 17, 2006).

American College of Medical Genetics (ACMG), "Technical Standards and Guidelines for CFTR Mutation Testing", Bethesda , 2005, http://www.acmg.net/Pages/ACMG_Activities/stds-2002/cf.htm(date accessed: August 17, 2006). This is a revision of the 2001 "Laboratory Standards and Guidelines for Population-based Cystic Fibrosis Carrier Screening" (click on the link for details).

American College of Medical Genetics (ACMG), "ACMG Statement on Direct-to-Consumer Genetic Testing", (2004) 6:1 Genetics in Medicine , 60, http://www.acmg.net/resources/policies/Direct_Consumer_Testing.pdf (date accessed: August 17, 2006).

American College of Medical Genetics (ACMG), "Statement on Population Screening for BRCA-1 Mutation in Ashkenazi Jewish Women", 1996, http://genetics.faseb.org/genetics/acmg/pol-24.htm (date accessed : August 17, 2006). Can also be reached via http://www.acmg.net/resources/policies/pol-002.asp (date accessed : August 17, 2006).

American College of Medical Genetics (ACMG), "Laboratory Standards and Guidelines for Population-based Cystic Fibrosis Carrier Screening", (2001) 3: 2 Genetics in Medicine , 149-154, ( retired ) http://genetics.faseb.org/genetics/acmg/pol-32.htm (date accessed: August 17, 2006). Please also consult the revised 2005 version "Technical Standards and Guidelines for CFTR Mutation Testing" cited above.

American College of Medical Genetics (ACMG), "Position Statement on Gene Patents and Accessibility of Gene Testing", Bethesda, Maryland, August 2 1999, reaffirmed 2005, http://genetics.faseb.org/genetics/acmg/pol-34.htm (date accessed : August 17, 2006). Can also be reached via http://www.acmg.net/resources/policies/pol-015.asp (date accessed: August 17, 2006).

American College of Medical Genetics (ACMG), "Position Statement on Carrier Testing for Canavan Disease", Bethesda , Maryland , January 10, 1998 , http://genetics.faseb.org/genetics/acmg/pol-31.htm (date accessed : August 17, 2006). Can also be reached via http://www.acmg.net/resources/policies/pol-003.asp (date accessed : August 17, 2006).

American College of Medical Genetics Foundation (ACMG), "Genetic Susceptibility to Breast and Ovarian Cancer : Assessment, Counseling and Testing Guidelines", United States , June, 1998, http://www.health.state.ny.us/nysdoh/cancer/obcancer/contents.htm (date accessed : August 17, 2006).

American College of Medical Genetics (ACMG), "Statement on Storage and Use of Genetic Materials" (1995) 57 Am. J. Hum. Genet. 1499, http://genetics.faseb.org/genetics/acmg/pol-17.htm (date accessed : August 17, 2006). Can also be reached via http://www.acmg.net/resources/policies/pol-028.asp (date accessed : August 17, 2006).

American Society of Human Genetics (ASHG)/ American College of Medical Genetics (ACMG), ASHG/ACMG Report, "Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents", (1995) 57 Am. J. Hum. Genet. 1233-1241, http://genetics.faseb.org/genetics/ashg/policy/pol-13.htm (date accessed : August 17, 2006). Can also be reached via http://www.acmg.net/resources/policies/pol-018.asp (date accessed : August 17, 2006).

American College of Occupational and Environmental Medicine (ACOEM), "Genetic Screening in the Workplace" (2005), Arlington Heights, December 13, 2005, http://www.acoem.org/guidelines/consensus/Genetic%20Position%20Statement.pdf (date accessed: August 17, 2006).

American Medical Association, "E-2.131 Disclosure of Familial Risk in Genetic Testing", Chicago , June 1, 2003 http://www.ama-assn.org/ama/pub/category/print/11963.html (date accessed: August 17, 2006).

American Medical Association (AMA), "Genetic Testing for Susceptibility to Cancer", (1998) 279:20, Journal of the American Medical Association, 1609, http://jama.ama-assn.org/cgi/content/full/279/20/1612 (date accessed : August 17, 2006).

American Medical Association (AMA) - Council on Ethical and Judicial Affairs, CEJA Report 1, I-96, "Multiplex Genetic Testing", (July-August 1998) 28:4 Hastings Center Report 15-21, http://www.ama-assn.org/ama1/pub/upload/mm/369/ceja_1i96.pdf (date accessed : August 18, 2006).

American Medical Association (AMA), "E-2.139 Multiplex Genetic Testing", Chicago , Illinois , June, 1998, http://www.ama-assn.org/ama/pub/category/8440.html (date accessed : August 18, 2006).

American Medical Association (AMA), "E-2.138 Genetic Testing of Children", Chicago , Illinois , June, 1996, http://www.ama-assn.org/ama/pub/category/8439.html (date accessed : August 18, 2006).

American Medical Association (AMA), "H-480.966 Multiplex Genetic Testing", Chicago, January 1996, http://www.ama-assn.org/apps/pf_new/pf_online?f_n=browse&doc=policyfiles/HnE/H-480.966.HTM (date accessed : August 18, 2006).

American Medical Association (AMA), "H-55.979 Genetic Susceptibility Testing for Breast and Ovarian Cancer", Chicago , Illinois , January, 1996, http://www.ama-assn.org/apps/pf_new/pf_online?f_n=browse&doc=policyfiles/HnE/H-55.979.HTM (date accessed : August 18, 2006).

American Medical Association (AMA), "E-2.137 Ethical Issues in Carrier Screening of Genetic Disorders", Chicago , Illinois , June, 1994, http://www.ama-assn.org/ama/pub/category/8435.html (date accessed : August 18, 2006).

American Medical Association (AMA), "E-2.132 Genetic Testing by Employers", Washington , DC , 1991, http://www.ama-assn.org/ama/pub/category/8435.html (date accessed : August 18, 2006).

American Medical Women's Association (AMWA), "Position Statement on Genetic Testing for Breast and Ovarian Cancer Susceptibility", Alexandria , November 1, 1995 , http://www.amwa-doc.org/index.cfm?objectid=0F14651E-D567-0B25-50AB495EB6CCEDF3 (date accessed: August 18, 2006).

American Society for Reproductive Medicine (ASRM), "Preimplantation Genetic Diagnosis", Birmingham , June 1, 2001 , http://www.asrm.org/Media/Practice/practice.html (date accessed : August 18, 2006). (online access to ASMR Members only!)

American Society of Reproductive Medicine (ASRM) - Ethics Committee, " Sex Selection and Preimplantation Genetic Diagnosis " , Burmingham, October 1, 1999 , (1999) 72:4 Fertility and Sterility , 595 -598 http://www.asrm.org/Media/Ethics/Sex_Selection.pdf (date accessed : August 18, 2006).

American Society of Clinical Oncology (ASCO), "Statement of the American Society of Clinical Oncology: Genetic Testing for Cancer Susceptibility", Adopted on February 20, 1996 , Alexandria , Virginia , 1996, http://www.jco.org/cgi/content/abstract/14/5/1730 (date accessed : August 18, 2006).

American Society of Clinical Oncology (ASCO), "Policy Statement Update : Genetic Testing for Cancer Susceptibility", Adopted on March 1, 2003 , http://www.asco.org/asco/downloads/GeneticTesting.pdf (date accessed: August 18, 2006).

American Society of Human Genetics (ASHG), "ASHG Response to Request for Public Comments on Preliminary Final Recommendations on Oversight of Genetic Testing", United States, May 22, 2000, http://genetics.faseb.org/genetics/ashg/policy/pol-41.htm (page accessed : August 18, 2006).

American Society of Human Genetics (ASHG), ASHG Statement, "Professional Disclosure of Familial Genetic Information", (1998) 62: Am. J. Hum. Genet . 474-483, http://genetics.faseb.org/genetics/ashg/policy/pol-29.htm (date accessed : August 18, 2006).

American College of Medical Genetics (ACMG)/American Society of Human Genetics (ASHG), "Genetic Testing for Colon Cancer: Joint Statement of the American College of Medical Genetics and American Society of Human Genetics", (2000) 2: 6 Genetics in Medicine , 362-366, http://www.acmg.net/resources/policies/pol-004.pdf (date accessed: August 18, 2006).

Association of Reproductive Health Professionals (ARHP), ARHP Position Statement on "Screening and Prevention of Reproductive Cancers and Breast Cancer", Washington , June 7, 2003 , http://www.arhp.org/aboutarhp/positionstatements.cfm?ID=30#2 (date accessed: August 18, 2006).

Consortium on Pharmacogenetics, "Pharmacogenetics: Ethical and Regulatory Issues in Research and Clinical Practice", April 1st, 2002 , http://www.bioethics.umn.edu/news/pharm_report.pdf (date accessed: August 18, 2006).

The Council for Responsible Genetics, "The Genetic Bill of Rights", Cambridge , April 1, 2000 , http://www.gene-watch.org/programs/bill-of-rights.html(date accessed: August 18, 2006).

Council for Responsible Genetics, "Predictive Testing: CRG Position Paper", USA , October 25, 1999 , http://www.gene-watch.org/educational/predictive_testing.pdf (date accessed: August 18, 2006).

Council for Responsible Genetics, "A Proposed Model Law to Prevent Genetic Discrimination", Cambridge , Massachusetts , November 1996, Synthesis/Regeneration 17 (Fall 1998) http://www.greens.org/s-r/17/17-24.html (date accessed: August 18, 2006).

Council of Regional Networks (CORN) for Genetics Services, "Code of Ethical Principles for Genetics Professionals", (1996) 65 American Journal of Medical Genetics 177-178, http://www3.interscience.wiley.com/cgi-bin/accessdenied?ID=65521&Act=2138&Code=4717&Page=/cgi-bin/fulltext/65521/PDFSTART (date accessed: August 18, 2006).

Council of Regional Networks for Genetic Services, "Guidelines for the Retention, Storage, and Use of Residual Dried Blood Spot Samples after Newborn Screening Analysis: Statement of the Council of Regional Networks for Genetic Services", Atlanta , April 25, 1995, http://www.cdc.gov/genomics/population/file/print/bloodspot.pdf (date accessed: August 18, 2006). Published with modifications in Biochem Mol Med 1996; 57:116-124 ) http://www.sciencedirect.com/science?_ob=MImg&_imagekey=B6WBM-45N4P4C-6-1&_cdi=6714&_user=3914355&_orig=browse&_coverDate=04%2F30%2F1996&_sk=999429997&view=c&wchp=dGLbVlz-zSkWz&md5=3fcfc931cb3fbf014bdef9bbd3195582&ie=/sdarticle.pdf (date accessed: August 18, 2006).

Epilepsy Foundation, "Statement on Genetic Testing", Landover, January 1, 2001 , http://www.epilepsyfoundation.org/advocacy/care/genedisc.cfm (date accessed : August 18, 2006)

National Breast Cancer Coalition (NBCC), "Position Statement on Genetic Testing for Inherited Predisposition to Breast Cancer", Washington , April, 2004, Updated April 2006, http://www.natlbcc.org/bin/index.asp?strid=661&depid=9&btnid=1 (date accessed: August 18, 2006)

National Cancer Institute, "Genetic Testing for Breast and Ovarian Cancer Risk: It's Your Choice", 03/2001, http://www.nci.nih.gov/cancertopics/Genetic-Testing-for-Breast-and-Ovarian-Cancer-Risk, (date accessed: August 18, 2006)

National Human Genome Research Institute (NHGRI), "Promoting Safe and Effective Genetic Testing in the United States - Final Report of the Task Force on Genetic Testing", Baltimore , Maryland , September, 1997, http://biotech.law.lsu.edu/research/fed/tfgt/ (date accessed : August 18, 2006).

Cancer Genetics Studies Consortium, "Recommendations for Follow-up Care of Individuals With an Inherited Predisposition to Cancer. II. BRCA1 and BRCA2.", 1997, 227:12, JAMA , 997-1003, http://jama.ama-assn.org/cgi/content/abstract/277/12/997 (date accessed : August 18, 2006).

National Organization for Rare Disorders (NORD), "NORD Policy Position: Genetic Discrimination", Washington DC , August 11, 2000 , http://www.rarediseases.org/nord/news/policy/genedis (date accessed: August 18, 2006).

National Society of Genetic Counselors (NSGC), "Preconception/Prenatal Genetic Screening", Wallingford , 2005, http://www.nsgc.org/about/position.cfm#Preconception (date accessed: August 18, 2006).

National Society of Genetic Counselors (NSGC), "Genetic Cancer Risk Assessment and Counseling: Recommendations of the National Society of Genetic Counselors", (2004) 13: 2 Journal of Genetic Counseling , 83, http://www.guideline.gov/summary/pdf.aspx?doc_id=5274&stat=1&string (date accessed: August 18, 2006). See also via http://www.springerlink.com/content/v053u7467071k047/fulltext.pdf (date accessed: August 18, 2006).

National Society of Genetic Counselors (NSCG), "Cystic Fibrosis Screening", USA , Adopted December 1999, Retired 2003, http://www.nsgc.org/about/position.cfm#Prenatal_two (date accessed: August 18, 2006).

National Society of Genetic Counselors, "Prenatal and Childhood Testing for Adult-Onset Disorders", Wallingford , Pennsylvania , 1995, http://www.nsgc.org/about/position.cfm#Cystic(date accessed: August 18, 2006).

National Society of Genetic Counselors, "Confidentiality of Test Results", Adpoted in 1991. http://www.nsgc.org/about/position.cfm#Confidentiality (date accessed: August 18, 2006).

Personalized Medicine Coalition (PMC), Comments on SACGHS Draft Report "Coverage and Reimbursement of Genetic Tests and Services", Policy Position, Washington, May 11, 2005, http://www.personalizedmedicinecoalition.org/sciencepolicy/public-policy_sacghs-position.php (date accessed : August 18, 2006).

Secretary's Advisory Committee on Genetic Testing, "Development of a Classification Methodology for Genetic Tests: Conclusions and Recommendations of the Secretary's Advisory Committee on Genetic Testing", Bethesda , September 13, 2001 , http://www4.od.nih.gov/oba/sacgt/reports/Addendum_final.pdf (date accessed : August 18, 2006).

Secretary's Advisory Committee on Genetic Testing, Secretary's "Response to the SACGT Report on Enhancing the Oversight of Genetic tests", Washington , January 19, 2001 , http://www4.od.nih.gov/oba/sacgt/McCabe.pdf (date accessed : August 18, 2006) .

Secretary's Advisory Committee on Genetic Testing, "Enhancing the Oversight of Genetic Tests: Recommendations of the SACGT", Bethesda , 07/01/00 , http://www4.od.nih.gov/oba/sacgt/reports/FINAL_SACGTreport713700correctedpage27.htm (date accessed : August 18, 2006).

Society for Women's Health Research, "Policy Statement on Genetic Testing", Washington , January 1, 1995 , http://www.womens-health.org/ ( site under construction : August 21, 2006).

Breast Cancer Working Group of the Stanford Program in Genomics, Ethics, and Society. "Genetic Testing for BRCA1 and BRCA2: Recommendations of the Stanford Program in Genomics, Ethics, and Society" (1998) 7 (5) Journal of Women's Health , 531-545, http://cmgm.stanford.edu/biochem118/Papers/Hank_Greely/Choices-Biomedical_ethics.pdf (date accessed : August 18, 2006).

American Geriatrics Society, AGS Ethics Committee, AGS Position Statement "Genetic Testing for Late-Onset Alzheimer's Disease", New York, November 1, 2000, http://www.americangeriatrics.org/products/positionpapers/gen_test.shtml (date accessed: August 18, 2006).

The Genetics & Public Policy Center , "Preimplantation Genetic Diagnosis", Washington , January 1, 2004, http://www.dnapolicy.org/images/issuebriefpdfs/PGD_Issue_Brief.pdf (date accessed: August 18, 2006).

The Genetics & Public Policy Center , "Preimplantation Genetic Diagnosis (PGD): A Discussion of Challenges, Concerns, and Preliminary Policy Options Related to the Genetic Testing of Human Embryos" http://www.dnapolicy.org/images/reportpdfs/PGDDiscussionChallengesConcerns.pdf (date accessed: August 18, 2006).

National Women's Health Information Center , "Hereditary susceptibility to breast and ovarian cancer: An outline of fundamental knowledge needed by all health care professionals", Fairfax , October 1, 1998 , http://www.4woman.gov/napbc/catalog.wci/napbc/hsedcurr.htm (date accessed: August 18, 2006)

National Women's Health Information Center , "Position paper: Hereditary susceptibility testing for breast cancer", Fairfax , March 1, 1996 , http://www.4woman.gov/napbc/catalog.wci/napbc/hspospap.htm (date accessed: August 18, 2006)

Society of Surgical Oncology, "Society of Surgical Oncology: Statement on Genetic Testing for Cancer Susceptibility", (1999),6(5), Annals of Surgical Oncology , 507-509, http://www.springerlink.com/content/twbr9bn64x5tb07j/fulltext.pdf (date accessed: August 21, 2006)

Union of American Hebrew Congregations (UAHC), Proposed Resolution from the Commission on Social Action of Reform Judaism, "Breast Cancer, Genetic Testing, and Health Insurance Discrimination", UAHC 64 th Biennial Convention, Dallas, October 29-November 2,1997, http://www.urj.us/dallas/dreso/bc.html (date accessed: August 18, 2006)

Department of Health and Human Services (DHHS)- U.S. Preventive Services Task Force (USPSTF), Clinical Guidelines, "Genetic Risk Assessment and BRCA Mutation Testing for Breast and Ovarian Cancer Susceptibility: Recommendation Statement", Rockville , September 6, 2005 , http://www.ahrq.gov/clinic/uspstf05/brcagen/brcagenrs.pdf (date accessed: August 18, 2006). See also in Ann Intern Med 2005; 143 (5):355-361 http://www.annals.org/cgi/reprint/143/5/355.pdf (date accessed: August 18, 2006).

United States - National Human Genome Research Institute, "Genetic Information and the Workplace", Rockville Pike, January 20, 1998 , http://www.genome.gov/10001732 (date accessed: August 18, 2006).

Washington State Department of Health, "Critical Element of Genetic Evaluation and Genetic Counseling : Breast Cancer Risk Assessment and Genetic Susceptibility Testing for Unaffected Individuals", Kent , February 5, 1997 , http://www.gemdatabase.org/GEMDatabase/WA-CE/Brca98.htm (date accessed : August 18, 2006).

Washington State Department of Health, "Critical Elements of Genetic Evaluation and Genetic Counseling : Adult Presymptomatic for Huntington Disease", Kent , December 7, 1996 , http://www.gemdatabase.org/GEMdatabase/WA-CE/HD98.htm (date accessed : August 18, 2006). (3 documents: see next two ref.)

Washington State Department of Health, "Critical Elements of Genetic Evaluation and Genetic Counseling : Pregnant Woman with a Family History of Huntington Disease", Kent , December 7, 1996 , http://www.gemdatabase.org/GEMdatabase/WA-CE/HD98.htm (date accessed : August 18, 2006). (3 documents: see previous and next ref.)

Washington State Department of Health, "Critical Elements of Genetic Evaluation and Genetic Counseling : Symptomatic Individual with Huntington Disease", Kent , December 7, 1996 , http://www.gemdatabase.org/GEMdatabase/WA-CE/HD98.htm (date accessed : August 18, 2006). (3 documents: see previous two ref.)

 

Provincial (Canada)

Agence d'�valuation des technologies et des modes d'intervention en sant� (AETMIS), � Le d�pistage pr�natal du syndrome de Down et d'autres aneuplo�dies au premier trimestre de la grossesse �, Montreal, March 1, 2003, http://www.aetmis.gouv.qc.ca/fr/publications/scientifiques/depistage_genetique/2003_01_fr.pdf (date accessed: August 21, 2006).

( First-trimester Prenatal Screening for Down Syndrome and Other Aneuploidies ) English translation: July 2003, http://www.aetmis.gouv.qc.ca/site/download.php?6fab995deb5d3bc976785baa51021405 (date accessed: August 21, 2006).

Agence d'�valuation des technologies et des modes d'intervention en sant� (AETMIS), "Issues concerning prenatal screening and diagnosis of Down syndrome" (CETS 99-4 RE), Montreal, June 1, 2001, http://www.aetmis.gouv.qc.ca/fr/publications/scientifiques/depistage_genetique/1999_04_en.pdf ( (date accessed: August 21, 2006).

Agence d'�valuation des technologies et des modes d'intervention en sant� (AETMIS), "Fragile X Syndrome: The Role of Molecular Diagnosis and Screening in An Integrated Approach to Services" (AETMIS 01-1 RE), Montreal , March 1, 2001 , English Report August 2002, http://www.aetmis.gouv.qc.ca/fr/publications/scientifiques/depistage/2001_01_res_en.pdf (date accessed: August 21, 2006).

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