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Career Information

Ethical, Legal and Social Issues

Family History

For Family

For Health Professionals

  • American Medical Association
    Developed for health care providers, this site contains information about the importance of family history, a prenatal screening questionnaire that can be used for patients, a pediatric questionnaire, and an adult family history form.
  • Family History Public Services Announcement – Centers for Disease Control & Prevention
    These five public services announcements were developed by the National Human Genome Research Institute in cooperation with the Office of the U.S. Surgeon General for health care providers.  Featuring stories about how increased healthcare provider family history knowledge can improve the health of all Americans, these announcements are available for download.

Genetic Disorders

  • Dolan DNA Learning Center
    The Dolan Learning Center’s website provides information on many genetic disorders. It includes information on the treatment, cause, symptoms, facts and theories, incidence, and tests or screening for it. It also has links for each disorder with in-depth information.
  • U.S. National Library of Medicine
    The Genetics Home Reference page provides a glossary of genetic disorders. Each disorder has a link which leads to a page with more information about the disorder.

Genetic Testing

  • National Institutes of Health
    The National Human Genome Research Institute provides this primer on genetic testing with frequently asked questions.
  • The Mayo Clinic
    The Mayo Clinic’s website includes this article called Genetic Testing: Weighing its Benefits and Risks.
  • Genetics and Public Policy Center
    As well as including genetics information and information on polls and research, the Genetics and Public Policy Center’s website also includes this article on reproductive genetic testing.
  • U.S. National Library of Medicine
    The Genetics Home Reference page has a handbook, glossary, and resource information as well as this basic section on genetic testing.

Glossaries and Directories

Information and Resources for Families

  • National Human Genome Research Institute – Genetic and Rare Diseases
    The Genetic and Rare Diseases Information Center employs experienced information specialists to answer in English or Spanish questions from the general public, including patients and their families, health care professionals and biomedical researchers. Note: The Genetic and Rare Diseases Information Center does not give medical advice, provide treatment, or diagnose illness.
  • March of Dimes
    The March of Dimes is an organization that supports babies with disabilities and their families. The site includes a news section, a newsletter archive, and feature articles on topics such as pregnancy and premature birth.
  • National Family Voices
    The Family Voice website includes resources and program information.
  • Hawaii Chapter of Family Voices
    This is the Hawaii Chapter of Family Voices. It includes links to other Hawaii based programs and groups.
  • National Center for Research Resources
    The Genetic Science Learning Center’s website was created by the University of Utah and targets those in middle school. It has information on basic genetics, articles on current events in the genetics field, teacher resources and lesson plans, as well as fun genetic experiments to do at home. There is also a Spanish version of the site.
  • National Coordinating and Evaluation Center
    The Hawaii Sickle Cell Project works with the sickle Cell Disease and Newborn Screening Program National Coordinating and Evaluation Center (NCEC). Check out their website for more information about the program, a link to the Sickle Cell Disease Association of America, a list of project grantees from across the country, and more resources.
  • National Organization for Rare Disorders
    A patient advocacy organization for individuals with rare diseases and organizations that serve them. Information about identification, treatment, research, resources, and much more related to rare disorders.

National Legislation

Human Genome Project
This website lists and gives information on the national genetics legislation that already exists as well as those bills that have only been introduced to Congress.

Newborn Screening

  • Baby’s First Test
    Baby’s First Test is a national newborn screening education source for families and providers. It has information and resources about screening at the local, state and national levels.
  • Hawaii Department of Health
    Website developed for a multi-state (Hawaii, Alaska, California, Idaho, Oregon and Washington) project funded by the Health Resources and Services Administration. Information about expanded newborn metabolic screening including disorder fact sheets for parents and professionals.
  • Utah State University
    The National Center for Hearing Assessment and Management is partially funded by the Health Resources and Services Administration. The website has comprehensive information about hearing screening and follow-up issues.
  • March of Dimes – Newborn Screening
    Information about recommended newborn screening.
  • Save Babies Through Screening Foundation
    Parent advocacy and general information about expanded newborn screening.

Educational Resources

  • National Institutes of Health
    This National Cancer Institute website includes a section on gene testing. This section includes forty different slide shows on a range of topics.
  • American Society of Human Genetics
    This is the educational section of the American Society of Human Genetics website. It contains resources for teaching genetics.
  • Nemours Foundation
    The TeensHealth website contains information in all areas of teen health, including an article on genetics. This article, “The Basics on Genes and Genetic Disorders”, explains genes and genetic disorders.
  • PBS
    PBS’ website “Cracking the Code of Life” targets High School students. The site includes classroom resources, a genetic survey, streaming video clips of the PBS genetics show, and interesting articles. It provides a lot of information that most sites don’t have in a fun format.
  • Dolan DNA Learning Center
    The Dolan DNA Learning Center site is mainly for college and high school students. It includes gene news, a media showcase, genetics information, as well as information on student camps, educator training, and membership. It also provides a lot about classical genetics and molecular genetics. The top navigation bar links to a lot of different genetics sites.
  • National Institutes of Health
    The Human Genome Project has created this Education Resources page on its website. It includes information on the project, online Genetics education resources, a glossary of genetics terms, genetics education modules for teachers, fact sheets and more.

Last Updated: 8/14/2020