National
National Centre for Medical Genetics (NCGM)- Ireland
This link connects to the homepage of the NCMG - Ireland. It aims to provide a comprehensive service for all patients and families in the Republic of Ireland affected by or at risk of a genetic disorder. The Centre comprises three integrated units, a Clinical Genetics service, a Cytogenetics laboratory and a Molecular Genetics laboratory and has a strong research element. The Centre provides a service for both children and adults, and has clinic facilities designed with adults as well as children in mind.
International
American Board of Genetic Counselling
This link connects directly to the homepage of the ABGC. This group prepares and administers examinations in order to certify individuals who provide services in the medical genetics speciality of genetic counselling. It also accredits training programs in the field of genetic counselling.
American Counselling Association
This link connects to the homepage of the ACA. It aims to provide valuable information on aspects of counselling practice along with ethical principles.
American Society of Human Genetics
This link connects directly to the homepage of the ASHG. They aim to:
- Provide venues to bring investigators opportunities to share their research findings in the many areas of endeavours in human genetics.
- Inform health professionals, legislators, health policy makers, and the general public about all aspects of human genetics.
- Facilitate interactions between geneticists and other communities including policy makers, industry, educators, and patient and public advocacy groups.
http://www.ashg.org/genetics/ashg/ashgmenu.htm
Animations of Structural Chromosome abnormalities - Tokyo Medical University Department of Paediatrics Study Group
This link connects to a genetic image resource. They are for genetic education only and are generalised only.
http://www.tokyo-med.ac.jp/genet/cai-e.htm
Association of Genetic Nurses and Counsellors
This link connects to the homepage of the AGNC – UK. This site aims to provide information on training and registration for nurses and counsellors working in genetics. It also aims to provide a code of ethics and standards of competence for nurses and counsellors working in genetics.
Bioethics Today
This link connects to the homepage of the Bioethics Today an electronic bioethics resource for the UK.
http://www.bioethics-today.org/
British Association for Counselling and Psychotherapy
This link connects to the homepage of the BACP- UK. It aims to provide valuable information on the practice of counselling, code of ethics and standards for practice.
British Society of Human Genetics
This link connects directly to the homepage of the BSHG. It is an independent body representing UK human genetics professionals. Its constituent organisations are:
- Clinical Genetics Society (CGS).
- Association of Clinical Cytogeneticists (ACC).
- Clinical Molecular Genetics Society (CMGS).
- Association of Genetics Nurses and Counsellors (AGNC).
Cambridge Genetics Knowledge Park
This link connects to the homepage of CGKP. It is one of six in England and Wales, funded by the Genetics Knowledge Challenge Fund. It aims to:
- Create and support a network of individuals and organisations in and around Cambridge with active interests in human genetics by fostering collaboration between academics in the sciences and humanities, public health professionals, clinicians and the commercial sector.
- Transform information from scientific studies on genetics into knowledge through its validation by critical appraisal, by seeking a patient and public perspective, and by placing it in its ethical, legal and social context.
- Stimulate the transition from research into clinical and commercial benefits through programmes and activities designed to promote intensive dissemination and sharing of genetics knowledge.
- Provide national leadership in public health genetics and to contribute to the development of genetics policy for health and health services by working closely with policy makers in government and other institutions.
http://www.cgkp.org.uk/index.php
Canadian Association of Genetic Counsellors
This link connects directly to the homepage of CAGC. The CAGC aims to establish minimum standards of practice, encourage professional growth and gain recognition of the genetic counselling profession in Canada.
Cancer Genetics Services Directory – of the US National Cancer Institute
This page connects to the US NCI cancer genetics services directory. It aims to provide a list of professionals who provide services related to cancer genetics (cancer risk assessment, genetic counselling, genetic susceptibility testing, and others).
http://cancer.gov/search/geneticsservices/
CDC- Genomic and Disease Prevention
This link connects directly to the homepage of the Office of Genomic and Disease Prevention (OGDP) at Centre for Disease Control – USA. The site aims to provide information about human genomic discoveries & how they can be used to improve health & prevent disease. It also aims to provide links to CDC wide activities in public health genomic across the lifespan.
Centre for Medical Genetics and Policy – UK
This link connects to the homepage of the CMGP. It is part of the Faculty of Clinical Medicine of the University of Cambridge, and is a virtual organisation that aims to provide a focus for all disciplines with a shared interest in genetics. It aims to:
- Promote research and teaching in the field of medical genetics and policy, and in its public health, ethical, legal and social implications.
- Cooperate with other organisations to promote a better understanding of the policy implications of medical genetics.
- Provide input into the development of policy for medical genetics, through seminars, meetings, reports and policy papers.
- Provide a forum for informed debate among all those with an interest in the application of genetics in medicine, including genetic scientists, epidemiologists, public health professionals, policy makers and scholars working in law, ethics, philosophy, history, management, and the social sciences.
- Contribute to the work of the Cambridge Genetics Knowledge Park.
http://www.cmgp.org.uk/index.php
Clinical Genetics Society.
This link connects directly to the homepage of the CGS-U.K. aims to promote and advance the science and practice of clinical genetics.
European Society of Human Genetics
This link connects directly to the homepage of the ESHG. It is an international professional society which aims to:
- Promote research in basic and applied human and medical genetics.
- Facilitate contact between all persons who share these aims.
GeneTests
This link connects to the homepage of the National Institutes of Health Gene Tests website- USA. It aims to provide current, authoritative information on genetic testing and its use in diagnosis, management, and genetic counselling. It also aims to promote the appropriate use of genetic services in patient care and personal decision-making. Its resources include:
- GeneReviews- online publication of expert authored disease reviews.
- Laboratory Directory- an international directory of genetic testing laboratories.
- Clinic Directory – an international directory of genetics and prenatal diagnosis clinics.
- Educational materials.
Genetics Club
This link connects directly to the homepage of the Genetics Club-UK. It is a national forum for the discussion, by health professionals, of practical ethical problems encountered in the working lives of clinical genetics departments in the United Kingdom. The Genetics Club takes place three times a year and anyone working in a clinical genetics department is welcome to come along. The meetings are multi-disciplinary and aim to have a medical ethicist and an academic medical lawyer present at each meeting.
http://www.ethox.org.uk/Genethics/index.htm
Genetics Education Centre – University of Kansas Medical Centre
This link connects to the genetics-learning centre of the University of Kansas USA. It contains links and resources for genetics education.
Genetics Glossary of the Genetics Interest Group
This link connects to the glossary of genetics terms provided by the GIG. The Genetic Interest Group (GIG) is a national alliance of patient organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders and it provides this web glossary as part of their services.
http://www.gig.org.uk/glossary.htm
Human Genetics Society of Australasian
This link connects directly to the homepage of the HGSA. This group aims to provide a forum for those dedicated to the study, investigation and practice of Human Genetics. They also aim to:
- Promote high ethical standards among those working in Human Genetics.
- Promote communication between those working in Human Genetics.
- Provide training and professional recognition for those involved in Human Genetics.
- Provide professional and lay education about Human Genetics.
- Promote public awareness of Human Genetics.
- Provide consideration and comment upon matters relevant to Human Genetics or the interests of the Society.
- Represent the interests of Human Genetics and those working in the field, and of the Society and its members, in public, professional, governmental and other forums.
- Promote and support research in Human Genetics.
- Provide performance or support of any activity which may achieve all or any of the foregoing
International Society of Nurses in Genetics
This link connects to the homepage of the ISONG. It is a nursing speciality organisation dedicated to fostering the scientific and professional growth of nurses in human genetics. It aims to:
- Provide a forum for education and support for nurses providing genetic healthcare.
- Promote the integration of the nursing process into the delivery of genetic healthcare services. Encourage the incorporation of the principles of human genetics into all levels of nursing education.
- Promote the development of standards of practice for nurses in human genetics.
- Advance nursing research in human genetics. Provide a forum for dialogue with others.
JMG Online
This link connects to the online Journal of Medical Genetics, which covers original research in human genetics.
National Council of Genetic Counsellors
This link connects directly to the homepage of NSGC-USA. The society aims to be the leading voice, authority and advocate for the genetic counselling profession and to promote the genetic counselling profession as a recognised and integral part of health care delivery, education, research and public policy. It also aims to promote the professional interests of genetic counsellors and provide a network for professional communications.
National Human Genome Research Institute
This link connects to the homepage of the NHGRI. The NHGRI contributed to the International Human Genome Project, which had as its primary goal the sequencing of the human genome. They now aim to encompass a broad range of studies aimed at understanding the structure and function of the human genome and its role in health and disease. It aims to support the development of resources and technology that will accelerate genome research and its application to human health. It also aims to continue to study the ethical, legal and social implications (ELSI) of genome research and support the training of investigators and the dissemination of genome information to the public and to health professionals.
National Screening Committee - UK
This link connects to the homepage of the NSC. This committee aims to advise ministers and the national assemblies along with the Scottish Parliament on all aspects of screening policy. It aims to do so by drawing on the latest research evidence and skills of experts and also patient and service user representatives.
Online Mendelian Inheritance of Man (OMIM)
This link connects to the homepage of OMIM – of Johns Hopkins University. This a database catalogue of human genes and genetic disorders authored and edited by Dr. Victor A. McKusick and his colleagues at Johns Hopkins and elsewhere, and developed for the World Wide Web by NCBI, the National Centre for Biotechnology Information. The database contains textual information and references. It also contains copious links to MEDLINE and sequence records in the Entrez system, and links to additional related resources at NCBI and elsewhere.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM
Public Health Genetics Unit- UK
This link connects to the homepage of the PHGU-UK. The PHGU aims to:
- Keep abreast of developments in molecular and clinical genetics, and in their ethical, legal, social and public health implications.
- Provide a link between academic research, clinical practice and the development of policy within the NHS for genetics and genetic services, including the implications for the funding, development, staffing, organisation and provision of those services.
- Establish mechanisms for dialogue within the NHS between geneticists, physicians, public health and primary care professionals on matters related to genetics, molecular medicine and genetic services.
- Provide an epidemiological and public health perspective on NHS policy development for genetic and related services, including criteria for evaluating genetic testing and genetic screening programmes.
The PHGU and the University of Cambridge’s Centre for Medical Genetics and Policy form the basis of the Cambridge Genetics Knowledge Centre.
http://www.phgu.org.uk/index.php
World Health Organisation Human Genetics ProgrammeThis link connects to the relevant WHO page of the Genomic Resource Centre.
http://www.who.int/genomics/about/en/
Your Genes Your Health – A multimedia Guide to Genetic Disorders
This link connects to the homepage of a multimedia guide to genetic disorders from the Dolan DNA Learning Centre, Cold Spring Habor Laboratory. It aims to provide information on number of genetic disorders such as Fragile X Factor, Cystic Fibrosis, Haemophilia, Polycystic Kidney disease etc.
http://www.yourgenesyourhealth.org/index.htm
Your Genome.org
This link connects to the homepage of the homepage of the your genome.org which is a website aimed at facilitating users understanding genomes and genomic science and its implications. The Wellcome Trust Sanger Institute produces it. It aims to answer questions on:
What is the human genome?
- Why research it?
- How can it be used?
- Who owns it?
