LINKS

Hawaii State Genetics Program
This link provides information about the state of Hawaii’s Newborn Metabolic Screening Program, the Birth Defects Program, Genetics Education, Special Projects and has a guide to Genetic Services in Hawaii.

Career Information

American Society of Human Genetics – Training and Careers
This website provides information on a wide range of careers in the genetics field.

Genetics Education Network – Training and Careers
This link provides information on a wide range of careers in the genetics field.

National Society of Genetic Counselors – Careers page
This site provides information on genetic counseling as a career.

Ethical, Legal and Social Issues

Ethical, Legal, and Social Issues Program

Genetics Discrimination in Health Insurance

Genetic Information and the Workplace

Policy and Legislation Database

Family History

For Family

My Family Health Portrait – National Institutes of Health, Department of Health and Human Services
This online tool was developed by the U.S. Surgeon General. By asking specific health questions about your family, the tool helps you create a personalized family history report and family tree. Although it focuses on certain diseases, you can add other conditions that are common to your family.

Family Health History Questionnaire – March of Dimes
For use by couples expecting a child or thinking of having a child, this questionnaire can be filled out and brought to your obstetrician.

Family Health History Toolkit – Utah Department of Health
This toolkit was designed to help you talk to your family about family history. It includes 10 questions you should ask your family, fun ideas to get your family talking about family history, when to see a genetic counselor, and genealogy resources.

Genetics Education Resource – The American Society of Human Genetics
This webpage explains how to collect a family history and what to do after you have completed it.

Compiling your Medical Family History – The Mayo Clinic
The Mayo Clinic’s website gives information on genetic diseases and conditions, treatment decisions, drugs and supplements, healthy living. It also includes a section on family history including what it is, how it’s useful and how to compile a family medical history.

For Health Professionals

Family History Collection for Health Professionals – National Coalition for Health Professional Education in Genetics
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.

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 – National Human Genome Research Institute
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

U.S. National Library of Medicine and National Institutes of Health
Medline Plus contains a glossary of Genetic disorders, a news section, newsletters/print publications, clinical trials, and research, as well as separate sections for children, teenagers, and women.

National Human Genome Research Institute
Funded by the National Human Genome Research Institute. This is a talking glossary of genetic terms. A Spanish version is also available.

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.

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 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.

The National Newborn Screening and Global Resource Center (NNSGRC)
NNSGRC is a cooperative agreement between the Maternal and Child Health Bureau (MCHB), Genetic Services Branch and the University of Texas Health Science Center at San Antonio (UTHSCSA), Department of Pediatrics. This site has information about newborn screening including national and state information.

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 Foundation – 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.

National Institutes of Health

The GeneTests website includes an online publication of disease reviews, a directory of laboratories, a directory of clinics, and education materials such as their illustrative glossary.

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.

Genetics Education Center
This Genetics Education Center website created by the University of Kansas Medical Center is directed towards teachers. It includes information, resources, lesson plans, activities, FAQ, and more.

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 side 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: 11/6/2015