Website Links for Providers
Certain links may also have information of use to patients and other caregivers. Those links are preceded by an asterisk (*). There is an additional list below of links that are primarily for patients and families.
American Academy of Family Physicians (AAFP) >>
Listings within the AAFP site for “Genetics.”
American College of Medical Genetics: Policy Statements on Genetic Testing, Population Screening, Managed Care, Clinical, and other issues. >>
- Population-Based Cystic Fibrosis Carrier Screening – 2001 >>
- Laboratory Standards and Guidelines for Genetic Testing for Colon Cancer – 2000 >>
- Genetic Susceptibility to Breast and Ovarian Cancer: Assessment, Counseling and Testing Guidelines – 1999 >>
- Genetics and Managed Care – 2001 >>
American Medical Association (AMA) >>
- Adult Family History Questionnaire >>
For patients to complete prior to their appointment to facilitate effective, efficient construction of family history. - Pediatric Clinical Genetics Questionnaire >>
For parents to complete prior to appointment to facilitate construction of family history. - CME course: Identifying and Managing Hereditary Cancer Risk >>
- CME course: Ethical Issues in Genetic Testing for BRCA1 and BRCA2 >>
- Genetics and Molecular Medicine >>
Within “AMA Science.” Includes a listing with links to new, relevant scientific abstracts.
*GeneClinics™ and *GeneTests™ >>
Expert-authored, peer-reviewed resource for clinical information. Concise descriptions of specific inherited disorders and current information on role of genetic testing in diagnosis, management and genetic counseling of patients with inherited conditions. Updated weekly. Funded by NIH, HRSA and DOE. Developed at the University of Washington.
GeneLetter >>
Online magazine with daily news, monthly features about scientific, medical and bioethical issues surrounding genetics and a journalwatch feature. Authors and guest columnists include leading specialists in human genetics.
*Genes and Disease >>
Series of web pages dedicated to specific diseases, providing short synopses for medical professionals as well as patients/families. Prepared and maintained by the National Center for Biotechnology Information (NCBI), National Library of Medicine, National Institutes of Health.
The Genetic Family History in Practice
New online publication from the National Coalition for Health Professional Education in Genetics. An excellent resource for educators and providers about the important, evolving role of the genetic family history in health care. Designed to facilitate access to family history resources for teaching and clinical practice.
Genetic Testing for Cystic Fibrosis: NIH Consensus Statement; 1997 >>
Most recent NIH Consensus statement about CF. Developed by an independent, non-Federal panel of experts and based on medical knowledge available at the time it was written. See also American College of Medical Genetics policy statement on CF carrier screening – 2001 above.
*Genetic Testing for Inherited Predisposition to Breast Cancer, Position Statement, June 2003 >>
On the website of The National Breast Cancer Coalition.
Genetics and Your Practice >>
Accessible through March of Dimes. A set of professional education services including live presentations at conferences, meetings, or at your site; a comprehensive print curriculum; an online list of genetic service providers and resource list and a CD ROM for self-paced learning.
Genetics in Primary Care (GPC) Training Program Curriculum >>
A faculty development initiative to help incorporate the clinical applications of genetic information into medical education. Case studies, including patients and families with breast and colon cancer, dementia, CV disease, hearing loss, and other disorders to emphasize the clinical relevance of genetic information in primary care. Designed as an resource for medical educators. 2001 version.
The Hastings Center >>
An independent, nonprofit and nonpartisan research organization addressing fundamental ethical issues in health, medicine, and the environment. Developed and produced the Genetic Dilemmas project. Publishes two journals – IRB and Hastings Center Report, including special supplements, with a wealth of material about genetics.
*Human Genome Project Information >>
A wide range of useful information about the HGP, Research, Education, Medicine, and of particular relevance to this program, Ethical, Legal & Social Issues. HGP is a 13-year effort coordinated by U.S. Dept. of Energy and NIH. Goals have included identifying all the approximately 30,000 genes in human DNA, determining the sequences of its 3 billion base pairs, and addressing the ethical, legal and social issues (ELSI) arising from the project.
*National Human Genome Research Institute >>
NHGRI led the Human Genome Project for the National Institutes of Health, which culminated in the completion of the full human genome sequence in April 2003. They have now moved into the genomic era with research aimed at improving human health and fighting disease. The site, which is divided into sections on Research, Health and Policy & Ethics, contains a wealth of current information about research, news and upcoming events, as well as policy and legislation. Of special relevance to our project, is the subsection on Ethical, Legal and Social Implications.
National Coalition for Health Professional Education in Genetics (NCHPEG) >>
National effort to promote health-professional education and access to information about advances in human genetics. Comprised of an interdisciplinary group of leaders from over 100 diverse health professional organizations, consumer and voluntary groups, government agencies, private industry, managed-care organizations and professional genetics societies.
Online Mendelian Inheritance in Man (OMIM) >>
Presents current knowledge of all known human genetic diseases, based on more than 30 years of work directed by Victor A. McKusick and colleagues at Johns Hopkins University. Linked to a variety of sites and current, related literature on PubMed.
*PDQ Cancer Genetics >>
A section of the CancerNet website of National Cancer Institute. Summaries of evidence-based information on the genetic basis of breast, ovarian and colorectal cancer.
Website Links for Patients and Families
Alliance of Genetic Support Groups >>
(202)966-5557. Helpline: 1-800-336-GENE.
An international coalition of more than 300 consumer and professional health organizations. Supports individuals/families with genetic conditions, educates the public and advocates for consumer-informed public policies. Special section on issues, including ethical, legal and social implications and genetic discrimination.
Cystic Fibrosis Foundation >>
(301) 951-4422 or (800) FIGHTCF (344-4823)
IMPACC (Intestinal Multiple Polyposis and Colorectal Cancer)
email: impacc@epix.net >>
(717) 788-1818. P.O. Box 11, Conyngham, PA 18219.
A support group for families with FAP and/or hereditary colon cancer.
The Johns Hopkins Colorectal Cancer Registry >>
(888)772-6566.
One of several registries in the U.S. for patients/families with a diagnosis of inherited colon cancer. Helps identify people at risk within a family, provides information and education and referral to genetic specialists.
NOAH: New York Online Access to Health, Genetic Disorders page
A bilingual (English-Spanish) resource for consumers with information from a variety of sources about genetics, genetic testing and specific diseases.
Journals (Theme issues)
British Medical Journal >>
Special Issue on Genetics in Primary Care. April 28, 2001; vol 322.
Journal of the American Medical Association >>
Theme Issue on Human Genomics/Genetics. November 14,2001;vol 286:no.18.
NERGG, Inc. >>
“Optimizing genetics services in a social, ethical and policy context: suggestions from consumers and providers…” The Genetic Resource Special Issue 1996;10(2):1-107. $10.00. A reference for training providers and a means of encouraging discussion in consumer groups. Video also available.
Science >>
Special Issue on the Human Genome. February 16, 2001; vol 291.
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This page last updated on December 9, 2003
