Genetics and Ethics in Health
Care: New Questions in the Age
of Genomic Health
By Rita Black Monsen, DSN, MPH, RN, FAAN, Editor -- Brochure and Order Form (PDF)
Genetics/Genomics Competency Center -- open source repository of curricular materials.
National Genetics Education and Development Centre -- a site for learners and educators about what is important to know and the activities to be undertaken in clinical practice. Includes factsheets, videos, powerpoint presentations, telling stories and case scenarios.
a searchable list of biochemical genetic tests and the laboratories that offer each.
GeneTests - a genetic testing resource which provides listings of clinical and/or research laboratories performing testing for heritable disorders.
is a moderated, interactive communication and information list serv in human genetics. Anybody interested in human genetics and molecular biology can subscribe to the mailing list, called HUM-MOLGEN and communicate directly with all other members at the same time. HUM-MOLGEN has 10 different topics. They are: NEWS in Human Genetics, CALLs for collaboration, ANNOuncements, LITErature, REVIews, ETHIcal and social issues, DIAGnostics, COMPutational Genetics, SPECial topics in Genetics, BIOTechnology. Subscribers can choose the topics from which to receive messages.
The Human Genome Program of the Department of Energy -
includes Primer on Molecular Genetics and To Know Ourselves.
Human Genome Project Information -
site for material about the history, progress, research, and resources of the Human Genome Project and maintained by the Human Genome Management Information System (HGMIS) for the U.S. Department of Energy Human Genome Program.
Information for Genetic Professionals -
at the University of Kansas Medical Center is updated regularly for genetic counselors, clinical geneticists, and medical geneticists with links to a variety of clinical, research and educational resources.
The Genetic Counseling Cultural Competence Toolkit is an online resource portal for genetics service providers interested in enhancing their ability to provide culturally and linguistically appropriate health care services. The website, developed with a JEMF (Jane Engelberg Memorial Fellowship) grant of the National Society of Genetic Counselors, features a network of links and resources on cross cultural communication and multilingual resources, health disparities and national standards, health literacy, clinical tools, teaching tools, etc. The website also includes 9 extensive cases that have been approved for Category 1 CEUs for genetic counselors and as an interdisciplinary continuing education opportunity for nurses. Continuing education credits are also available for medical interpreters and translators; students and other interested adult learners can earn a learning certificate for completing the case series.
Genetics Program for Nursing Faculty
At the Cincinnati Children's Hospital Medical Center, the Genetics Program for Nursing Faculty is a multifaceted genetics educational program for nursing faculty made possible through funding from the Ethical, Legal, and Social Implications Research Program of the National Human Genome Research Institute at the National Institutes of Health. Visit http://www.cincinnatichildrens.org/education/clinical/nursing/genetics/default/
content about cultural and social factors affecting health in selected ethnic groups.
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.
The Genetics Home Reference - for users who would like more general information about genetics. "Help Me Understand Genetics" provides a basic explanation of how genes work and how mutations cause genetic disorders. It also includes current information about genetic counseling, genetic testing, gene therapy, and the Human Genome Project.
National Office of Public Health Genomics -
This regularly updated site provides access to current information on the impact of human genetic research and the Human Genome Project on public health and disease prevention. It is also home to the web site for HuGE NeT (Human Genome Epidemiology Network) presenting information on epidemiologic aspects of human genes.
for the National Human Genome Research Institute at the National Institutes of Health.
Additional resources related to genetics from the NHGRI include: Spanish Talking Glossary of Genetics. This is a very helpful glossary using an innovative combination of text, illustrations and audio commentary in an accessible, user-friendly format. It is available free on NHGRI’s web site.
Online Mendelian Inheritance in Man. This database is a catalog of human genes and genetic disorders.
Washington State Department of Health - genetic service.
The Secretary’s Advisory Committee on Genetics, Health, and Society (SACGHS) final report, Genetics Education and Training, is now available. Click to view the report.
Telling stories, understanding real-life genetics is a web-based multi-media education resource that uses real-life stories from the public and professionals to promote knowledge and understanding of genetics and how it impacts on people's lives. The collection of 100 stories from individuals, patients, carers, professionals, in text and video formats are mapped to education frameworks for nurses, midwives, student doctors and primary care physicians.