Advancing excellence in laboratory medicine for better healthcare worldwide

Regional and National Guidelines & Reports

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", https://eur-lex.europa.eu/legal-content/en/TXT/?uri=CELEX%3A52005DC0286 (data accessed: 2019)

European Commission - The Independent Expert Group, "Ethical, Legal and Social Aspects of Genetic Testing: Research, Development and Clinical Applications", Brussels , 2004, https://publications.europa.eu/en/publication-detail/-/publication/2159a3bb-92af-4c6e-ab27-7bb0189773f9  (data accessed: 2019)

European Commission - The Independent Expert Group, "The 25 Recommendations on the Ethical, Legal and Social Implications of Genetic Testing", Brussels , 2004, https://publications.europa.eu/en/publication-detail/-/publication/24e42df9-799d-4108-bbf8-dbd9e3c35241/language-en/format-PDF/source-search (data accessed: 2019)

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 (data accessed: 2019)

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 (data accessed: 2019)

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 (data accessed: 2019)

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 (data accessed: 2019)

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 (data accessed: 2019)

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 (data accessed: 2019)

http://www.nature.com/ejhg/journal/v11/n2s/pdf/5201116a.pdf (data accessed: 2019)

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 (data accessed: 2019)

Argentina

Argentinean Society of Genetics, "Sociedad Argentina de Genética (SAG)":  http://www.sag.org.ar/ (data accessed: 2013)

Australia

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 (data accessed:  2019)

Human Genetics Society of Australasia - https://www.hgsa.org.au/ (data accessed: 2019)

Belgium 

Belgium Federal public service. Search results for Genetic testing (data accessed: 2019) http://www.health.belgium.be/eportal/SearchResults/index.htm

Brazil

Brazilian  Society of Genetics, "Sociedad Brasilera de Genética (SBG) http://www.sbg.org.br/ (data accessed: 2019)

Canada

Canadian College of Medical Genetics (CCMG)Various documents  http://ccmg-ccgm.org/ (data accessed: 2019)

Canadian Genetic Disease Network Company Profile http://www.bioportfolio.com/corporate/company/22179/Canadian-Genetic-Disease-Network.html (data accessed: 2019)

Canadian Down Syndrome Society (CDSS), http://www.cdss.ca/ (data accessed: 2019)

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 (data accessed: 2019)

Canadian Institute of Actuaries, "Report of the Task Force on Genetics", Ottawa , April 1, 2001 , http://www.actuaries.ca/members/publications/2001/20126e.pdf (data accessed :  2019)

Canadian Institute of Actuaries, "Statement on Genetic Testing and Insurance", 2000, November 13, 2000, http://www.actuaries.ca/members/publications/2000/20065e.pdf (data accessed : 2019)

Chile

Chilean Society of Genetics "Sociedad de Genética de Chile" since 1964, www.sochigen.cl (data accessed: 2019)

China and Hong Kong

Hong Kong Genetic Testing service by Hong Kong government http://www.dh.gov.hk/english/main/main_cgs/main_cgs.html (data accessed: 2019)

Accreditation of medical and genetic tests in Hong Kong by the Hong Kong Accreditation service (HOKLAS) http://www.itc.gov.hk/en/quality/hkas/hoklas/about.htm (data accessed: 2019)

Molecular Diagnostic service by The Chinese University of Hong Kong http://www.cuhk.edu.hk/med/paf/ups/molecular/ (data accessed: 2019)

Hong Kong Hereditary Breast Cancer Family Registry: Guidelines for Hereditary Breast Cancer testing http://www.asiabreastregistry.com/eng/index.html (data accessed: 2019)

Denmark

Danish Council on Ethics http://www.etiskraad.dk/en.aspx (data accessed: 2019)

France

National Consultative Ethics Committee for health and life sciences http://www.ccne-ethique.fr/en/pages/presenting-national-consultative-ethics-committee-health-and-life-sciences  -  http://www.ccne-ethique.fr/recherche?search_api_views_fulltext=genetics (data accessed:2013)

Germany

"Predictive Genetic Diagnosis - Scientific Background, Practical and Social Implementation", Bonn , March 27, 2003 , http://www.dfg.de/download/pdf/dfg_im_profil/reden_stellungnahmen/2003/predictive_genetic_diagnosis.pdf (data accessed: 2019)

German National Ethics Council, https://www.ethikrat.org/publikationen/

(data accessed: 2019)

In English: https://www.ethikrat.org/en/publications/ (data accessed: 2019)

India

Indian Council for Medical research. https://icmr.nic.inl (data accessed: 2019)

Italy

National Bioethics Committee ( Italy ), http://bioetica.governo.it (data accessed : 2019).

Japan

Japan Society of Human Genetics, "Guidelines for Genetic Testing", August, 2003, English translation October, 2004, http://jshg.jp/resources/data/10academies_e.pdf (data accessed: 2019) Resived on February 8, 2013: Japanese only. http://jshg.jp/news/data/genome_20130208.pdf  http://www.meti.go.jp/policy/mono_info_service/mono/bio/Seimeirinnri/shishinnhonbun.pdf

Full Revision of the Ethical Guidelines for Analytical Research on the Human Genome/Genes.

The Japanese Association of Medical Sciences, "Guidelines for Genetic Tests and Diagnoses in Medical Practice", approved on February 18, 2011 http://jams.med.or.jp/guideline/genetics-diagnosis_e.pdf (data accessed: 2019)

Japan Society of Human Genetics, https://jshg.jp/ (data accessed: 2019)

Japanese Committee for Clinical Laboratory Standards (JCCLS). JCCLS MM5-A1. An Approved Guideline for the Quality Management of Specimens for Molecular Methods: The Procurement, Transport, and Preparation of Specimens. JCCLS, Tokyo,   Japan, 2011. http://www.jccls.org/english/Approved%20QM%20specimesn111201.pdf (data accessed: 2019)

Public Policy and Regulation System concerning Genetic Medicine in Japan, S. Iwae and M. Shimoda; Formosan J Med Humanities; 2008,  vol 9,  27-39 http://www.ihs.ac.at/steps/gendialog/iwae_shimoda.pdf (data accessed: 2019)

Latvia

Latvia/Government, http://bmc.biomed.lu.lv/gene/print/Human%20Genome%20Research%20Law,%20Latvia.doc ) (Unofficial translation by the Biomedical Research and Study Centre)  (data accessed:  2019)

Mexico

Mexican Society of Genetics, "Sociedad Mexicana de Genética, http://smgac.org.mx/ (data accessed: 2019)

Netherlands

Health Council of the Netherlands https://www.gezondheidsraad.nl

(data accessed: 2019)

New Zealand

Ministry of Health New Zealand. http://www.health.govt.nz/search/results/Laboratory%20testing, http://www.health.govt.nz/about-ministry/ministry-health-websites/new-zealand-guidelines-group (data accessed: 2019)

Singapore

Health Science Authority Singapore, http://www.hsa.gov.sg/publish/hsaportal/en/home.html#page=tab1 (data accessed 2019)

South Africa

Department of Health Republic of South Africa. http://www.health.gov.za (data accessed: 2019)

Human Genetics and Genomics in South Africa: Ethical, Legal and Social Implications Academy of Science of South Africa (ASSAf) (2018)  http://research.assaf.org.za/handle/20.500.11911/106 (data accessed 2019)

Sweden

Swedish National Council on Medical Ethics,  http://www.smer.se/en/ (data accessed 2019)

Switzerland

Swiss Society of Medical Genetics http://sgmg.ch (data accessed 2019)

United Kingdom

Genetic Alliance Home page and policy page  http://www.geneticalliance.org.uk/ - (data accessed: 2019)

http://www.oecd.org/sti/biotech/regulatorydevelopmentsingenetictestingintheunitedkingdom.htm  (data accessed: 2019)

United States

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 (data accessed:  2019).

American College of Medical Genetics (ACMG) https://www.acmg.net/  (data accessed: 2019).

Association for Molecular Pathology, http://www.amp.org/ (data accessed:  2019).

Clinical Laboratory Standards Institute http://www.clsi.org/ (data accessed:  2019).

ANSI National Accreditation Board https://www.anab.org (data accessed 2013).

American Medical Association (AMA), https://www.ama-assn.org/  (data accessed 2019).

https://www.ama-assn.org/delivering-care/ethics (data accessed 2019).

https://www.ama-assn.org/search?search=genetic+testing (data accessed 2019).

Reference materials for Molecular Testing. http://wwwn.cdc.gov/clia/Resources/GetRM/default.aspx (data accessed: 2019)

Health and Human Services Guideline Clearing house by Organization http://www.guideline.gov/browse/by-organization.aspx?alpha=A  (data accessed:  2019).

National Human Genome Research Institute https://www.genome.gov/about-genomics (data accessed: 2019).

"Code of Ethical Principles for Genetics Professionals" http://www.ashg.org/pages/about_ethics.shtml (data accessed:  2019).  Storage and use of residual newborn screening blood spots  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3607938/ (data accessed: 2019)

http://www.ncbi.nlm.nih.gov/pubmed/23209103 (data accessed:  2019).

Cancer Genetics Risk Assessment and Counseling. National Cancer Institute and American Society of Clinical Oncology (ASCO) Policy Statement on Genetic Testing for Cancer Susceptibility. http://www.cancer.gov/cancertopics/pdq/genetics/risk-assessment-and-counseling/HealthProfessional/page5 (data accessed:  2019). http://jco.ascopubs.org/content/28/5/893.full.pdf (data accessed:  2019).

ACMG Position statement on  "Preconception/Prenatal Genetic Screening", http://www.nature.com/gim/journal/v15/n6/abs/gim201347a.html (data accessed:  2019).

Secretary's Advisory Committee on Genetic Testing, Secretary's "Response to the SACGT  - Center's for Disease Control Women's Health http://www.cdc.gov/women/ (data accessed:  2019).

CDC Genomics https://www.cdc.gov/genomics/default.htm (data accessed: 2019).

REGIONS

Provincial (Canada)

The "Institut national d'excellence en santé et en services sociaux"  https://www.inesss.qc.ca  (data accessed: 201)

Commissaire à la santé et au bien être - Québec (CSBE)   http://www.csbe.gouv.qc.ca/index.php (data accessed:  2019).

Ombudsman Ontario , Genetic testing http://www.ombudsman.on.ca/Search.aspx?searchtext=genetic (data accessed:  2019).

Ontario human rights commission Topics on Genetics  -  http://www.ohrc.on.ca/en/search/site/genetics (data accessed:  2019).

 
Website developed by Insoft