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Genetic Testing / Counseling

bullet Secretary's (DHHS) Advisory Committee on Genetics, Health and Society -- Provides advice to the DHHS on the broad array of complex medical, ethical, legal, and social issues raised by the development and use of genetic technologies. The archives of the Secretary’s Advisory Committee on Genetic Testing are linked to this site.

bullet PUBMED – This resource maintained by the National Library of Medicine links to journal articles. It is kept up to date. Information on genetic testing and ethics and on genetic counseling is available.

bullet | Genetic Testing – The NHGRI site on genetic testing provides summary information and links to policy documents and reports. Although some of the information is archival, new reports are added as they become available.

bullet | Direct to Consumer Marketing of Genetic Tests – The NHGRI site links to a 2004 workshop report on this topic. A bibliography is included.

bullet | Policy and Legislation Database Search – This NHGRI site allows the user to search by location, topic or keyword for genetics-related policies and legislation.

bullet Ethical, Legal, and Social Issues --Genome Research  - A DOE sponsored site developed to inform the user about the Human Genome Project. It contains information on many topics related to genetic and genomic research.

bullet The President’s Council on Bioethics (November 16, 2006) – This site is a transcript of a meeting on ethical issues related to genetic testing. The major speaker is Dr. Kathy Hudson, Director, Center for Genetics and Public Policy, Johns Hopkins University.

bullet Genetic Testing and Genetic Screening –  A  Kennedy Institute at Georgetown University Conference report.  The Report was first published in 1993. Scope Note 22, on this site, is an annotated bibliography that is updated periodically. In addition to a background essay, the topical bibliographies are on genetic privacy and discrimination, insurance issues, forensics, workplace/environmental genetic testing and screening, counseling, prenatal/minor genetic testing and screening, and genetic predisposition. Most items link to electronic publications.

bullet Ethics in genetic research and practice (2006) – A comprehensive essay on genetic screening, testing and counseling from SAHealthInfo, a South African Health Council site supported by the SA Medical Research Council. The material covers scientific and ethical issues.

bullet Human Genetic Testing: What Implications? (2004) – The European Commission convened an expert group to consider the implications of genetic testing. The Report  and the Recommendations are available.

bullet Ethical Aspects of Genetic Testing - An Information Paper (2000) – This paper from the National Health and Medical Council of Australia focuses on the key ethical issues related to genetic testing, such as obtaining consent, counseling, and privacy and confidentiality matters. Some basic information about the technical aspects of genetic testing is provided as background to the ethical issues. A bibliography, glossary and a list of Australian sources of information about genetic testing are included.

bullet Ethics of genetics – A Welcome Trust site that links to news, basic information and reports. Genetic Screening: Ethical Issues (2006 supplement) is an update of a 1993 report.

bullet The PHG Foundation (Public Health Genetics) – This site links to news stories relating to genetic testing.  It includes policy news from the UK and other countries, courses and events, and links to other sites.

bullet Genetic Testing & Screening at the University of Minnesota's Center for Bioethics - This resource summarizes types of genetic testing and ethical questions associated with genetic testing. It is sponsored by the University of Minnesota’s Center for Bioethics. It links to scientific and ethical resources and suggested readings.

bullet Genetics Resources on the Web (GROW) – A forum that encourages communication and collaboration among individuals interested in information about human genetics, especially those aspects of human genetics dealing with health, to health professionals and the public. Entering “Genetic Testing” in the search box will bring up many resources.

bullet Genetics Home Reference – An NIH sponsored site designed to educate public users about genetics.  Includes sections on genetic testing and genetic counseling.

bullet GeneTests – An NIH funded medical genetics information resource developed for physicians, other healthcare providers, and researchers. Includes educational materials on genetic testing and links to other resources.

bullet Genethics – This site maintained by Bryn Williams-Jones from the University of Montreal is a clearing-house for information on the social, ethical and policy issues associated with genetic and genomic knowledge and technology.  The site addresses a wide range of issues. The topics section provides links to genetic testing and counseling resources.

bullet Centre for Law and Genetics – The Centre provides information for the Australian and international communities on legal and ethical issues arising from developments in genetic technology. It advocates effective and equitable means for developing, applying and benefit-sharing of this technology. The Centre provides bibliographic links to full articles. This link to articles on genetic testing makes available a large number of recent journal articles. The Home Page of the site links to the Centre’s completed and ongoing research projects.

bullet Ethical Issues in Genetic Testing - Ethics  –  An  American Medical Association CME site. A case is presented on genetic testing.  The scientific, ethical, and clinical and genetic counseling aspects of the case are addressed.

bullet Browse BioethicsWeb > Genetics > Genetic counseling – A site sponsored by Intute, an online service created by a network of UK universities and partners to make education and research resources available.. Subject specialists select and evaluate the websites in the database and write descriptions of the resources. The site has references on genetics, genetic testing, counseling and other services.

bullet Bioethics Information Resources: Genetic Counseling – An NIH site that provides links to background material, references, career information and organizations.

bullet NSGC: Code of Ethics (2006 revision)  - The ethical code governing behavior of genetic counselors.  The document outlines the responsibilities of genetic counselors to clients and the public.

bullet Bibliography: Genetic Counseling – A bibliography on ethical issues and genetic counseling. It covers the literature from the 1970s – 1995.

bullet Genetic Counseling of Vulnerable Populations: The Role of Nursing. The International Code of Ethics for Nurses (2002) -  A position statement from the International Society of Nurses in Genetics.

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Last updated: 05/09/07