We are compiling a list of great websites to help you understand genetics and genetic test results. If you would like to suggest other resources for this section, please feel free to connollyj1 [at] chop.edu (send us an email)!
Genetics Home Reference
Consumer-friendly information about the effects of genetic variations on human health. Federally-supported resources, include reviews of more than 800 genetic diseases and more than 1000 genes.
Lab Tests Online
Produced by the American Association of Clinical Chemistry, Lab Tests Online provides detailed peer-reviewed, patient-centered reviews about lab testing and drug products. As well as English, it is also available in a range of Asian and European languages.
From the U.S. National Library of Medicine, MedlinePlus provides useful information about all aspects of health, including over 900 diseases. Resources include a medical encyclopedia, medical dictionary, and tutorials about common conditions, tests, and treatments. MedlinePlus has a catalog of information on prescription and nonprescription drugs, clinical trials, genetics, and genetic disease.
Genetic Alliance is the world's leading nonprofit health advocacy organization committed to transforming health through genetics. Their website is home to a range of educational resources for 'knowledgeable consumers and health professionals, particularly those without specialty training in genetics'.
Learning Resources from the NHGRI
Lots of very good resources from the NHGRI, including major sections about The Human Genome Project, Facts Sheets, and educational resources for teachers and students.
Find a Genetic Counselor
The National Society of Genetic Counselors have a searchable database of genetic counselors. Their website also includes some education materials for patients and healthcare professionals.
NHGRI Talking Glossary
Talking glossary of genetic terms developed by the National Human Genome Research Institute. A huge range of definitions is provided by researchers from around the world.
Help Me Understand Genetics
Help Me Understand Genetics is a handbook from the National Institutes of Health that contain useful information about genetics in clear language and provides links to even more online resources. The entire handbook can also be downloaded as a pdf.
Genetic and Rare Diseases Information Center (GARD)
A joint project from The Office of Rare Diseases Research (ORDR) and the National Human Genome Research Institute (NHGRI) that provides searchable information about genetic conditions and rare diseases. It also includes a list of FDA-Approved drugs and other medical products for treating rare disease.
National Organization for Rare Disorders - Resources for Parents/Families
The National Organization for Rare Disorders (NORD) is a volunteer organization dedicated to empowering the rare disease community. Again, they have some very nice web resources.
Ethical, Legal and Social Implications Research Program
The ELSI Research Program supports examinations and investigations of the ethical, legal and social implications of genetics research.
Genetic Information Nondiscrimination Act of 2008
The Genetic Information Nondiscrimination Act of 2008, also referred to as GINA, is a new federal law that protects Americans from being treated unfairly because of differences in their DNA that may affect their health.
Learn.Genetics, University of Utah
Excellent resources, especially for those involved in education. Includes a catalog of animations, videos, interactive features, and virtual labs.
Dolan DNA Leaning Center
The DNALC provides genetics learning resources for teachers and students.
The Pharmacogenomics Knowledge Base
A resource for medical professionals about how variation in human genetics leads to variation in response to drugs. It includes curated information about the impact of genetic variation on drug response.
Provides high quality information about marketed drugs, with important information about FDA labels (package inserts). DailyMed also provides downloadable health information for healthcare providers and the public.
A study developed by the eMERGE team at Columbia University to learn more about the use of personalized medicine to improve health care for everyone. Please note, this site requires registration.