Our Links with Other Organizations - Descriptions

NSGC provides a member or liaison to the following organizations:

American College of Medical Genetics (ACMG):

http://www.faseb.org/genetics/acmg/acmgmenu.htm

The American College of Medical Genetics (ACMG) is an organization composed of biochemical, clinical, cytogenetic, medical and molecular geneticists, genetic counselors and other health care professionals committed to the practice of medical genetics. The ACMG provides education, resources and a voice for the medical genetics profession. To make genetic services available to and improve the health of the public, the ACMG promotes the development and implementation of methods to diagnose, treat and prevent genetic disease.

Coalition for Genetic Fairness (CGF):

Coalition for Genetic Fairness

The Coalition for Genetic Fairness is an alliance of civil rights, patients' and health care organizations created to urge Congress to pass comprehensive federal legislation outlawing genetic discrimination. Current federal and state laws do not provide the protections needed to prevent employers and insurers from denying health coverage or job opportunities on the basis of genetic information.

Council of Medical Genetics Organizations (COMGO):

http://www.faseb.org/genetics/ashg/comgo.htm

Council of Medical Genetics Organizations (COMGO) Societies and organizations represent the research, academic, certification and clinical practice endeavors for human and medical genetics in America today. Representatives from these organizations sit on the Council of Medical Genetics Organizations (COMGO) founded in 1992. COMGO meets annually to discuss issues which affect the genetics community as a whole.

Genetic Resources on the Web (GROW):

Genetics Resources on the Web (GROW) is a forum to encourage communication and collaboration between individuals and organizations interested in Web-based information in human genetics. Inaugurated in a day-long meeting at the National Institutes of Health on August 17, 1999. Convened by the National Human Genome Research Institute, with financial support from the Office of Rare Diseases at NIH, GROWs's mission is to optimize the provision of high-quality human genetics information via the World Wide Web, focussing especially on those aspects of human genetics dealing with health, and directed toward health professionals and the public.

Genetics Awareness Coalition (GAC)

Genome Action Coalition (TGAC):

http://www.tgac.org/

Today, the Coalition is comprised of more than 130 members. They span a diverse range, including patient advocacy, associations and foundations, professional groups in the field of genetics, pharmaceutical research and biotechnology companies, and university-based research entities. TGAC has been active in a variety of issues. Members have testified before Congress concerning the level of appropriations for the National Institutes of Health and on other issues; it has been involved in such legislative issues as genetic nondiscrimination in health insurance, genetic nondiscrimination in employment, medical record privacy and others. In addition, it has conducted numerous, substantive briefings on Capitol Hill and elsewhere, and each year sponsors the James Watson Lecture and Award Ceremony.

Healthy Mothers, Healthy Babies (HMHB):

http://www.hmhb.org/

The National Healthy Mothers, Healthy Babies Coalition (HMHB) was created in 1981 as a result of the U.S. Surgeon General's conference on infant mortality. From its inception, HMHB has focused attention on raising public awareness of the basic components of prenatal care--early care, good nutrition, avoidance of drugs--including not drinking and not smoking, and promotion of breastfeeding.

International Society of Nurses in Genetics (ISONG):

http://nursing.creighton.edu/isong

The International Society of Nurses in Genetics is a nursing specialty organization dedicated to fostering the scientific and professional growth of nurses in human genetics. The mission is to foster the scientific, professional, and personal development of members in the management of genetic information. The goals of ISONG are to 1) Provide a forum for education and support for nurses providing genetic healthcare. 2) Promote the integration of the nursing process into the delivery of genetic healthcare services. 3) Encourage the incorporation of the principles of human genetics into all levels of nursing education. 4) Promote the development of standards of practice for nurses in human genetics. 5) Advance nursing research in human genetics 6) Provide a forum for dialogue with others.

National Coalition for Health Professional Education in Genetics (NCHPEG );

http://www.nchpeg.org

The National Coalition for Health Professional Education in Genetics (NCHPEG) is a national effort to promote health professional education and access to information about advances in human genetics. NCHPEG members are an interdisciplinary group of leaders from approximately 100 diverse health professional organizations, consumer and voluntary groups, government agencies, private industry, managed care organizations, and genetics professional societies. By facilitating frequent and open communication between stakeholder groups, NCHPEG seeks to capitalize on the collective expertise and experience of members and to reduce duplication of effort.

National Advisory Council for Human Genome Research (NACHGR):

http://www.nhgri.nih.gov/About_NHGRI/Od/Advisory/nachgr.html

The Council shall advise the Secretary; the Assistant Secretary for Health; the Director, NIH; and the Director, NHGRI, on matters relating to the conduct and support of, and dissemination of information respecting human genome research, training, and other programs related to the human genome initiative.

Secretary's Advisory Committee on Genetic Testing (SACGT):

http://www4.od.nih.gov/oba/sacgt.htm

Secretary of Health and Human Services Donna Shalala chartered the Secretary's Advisory Committee on Genetic Testing (SACGT) in June 1998. The SACGT will advise the government about all aspects of the development and use of genetic tests, including the complex medical, ethical, legal, and social issues raised by genetic testing. Committee may take up include: the development of guidelines, including criteria regarding the risks and benefits of genetic testing, to assist Institutional Review Boards in reviewing genetic testing protocols in both academic and commercial settings; the adequacy of regulatory oversight of genetic tests, provisions for assuring the quality of genetic testing laboratories; the need for mechanisms to track the introduction of genetic tests to enable accuracy and clinical effectiveness over time to be evaluated; and safeguarding the privacy and confidentiality of genetic information and preventing discrimination and stigmatization based on genetic information.

Return to top

Return to Resources