Recommended Websites

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] (send us an email)!

Weblink to Genetics Home Reference 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.

Weblink to Lab Tests Online 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.

Weblink to MedlinePlusMedlinePlus
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.

Weblink to Genetic AllianceGenetic Alliance
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'.

Weblink to Genetics Home ReferenceLearning 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.

Weblink to National Society of Genetic CounselorsFind 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.

Weblink to NHGRI Talking GlossaryNHGRI 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.

Weblink to Genetics Home Reference HandbookHelp 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.

Weblink to the Genetic and Rare Diseases Information CenterGenetic 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.

Weblink to NORDNational 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.

Weblink to ELSIEthical, Legal and Social Implications Research Program
The ELSI Research Program supports examinations and investigations of the ethical, legal and social implications of genetics research.

Weblink to GINAGenetic 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.

Weblink to Learn.GeneticsLearn.Genetics, University of Utah
Excellent resources, especially for those involved in education. Includes a catalog of animations, videos, interactive features, and virtual labs.

Weblink to the Dolan DNA Learning CenterDolan DNA Leaning Center
The DNALC provides genetics learning resources for teachers and students.

Weblink to the Pharmacogenomics Knowledge BaseThe 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.

Weblink to the Pharmacogenomics Knowledge BaseDaily Med
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.

Weblink to the Imagene website, 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. This project was sponsored by NIH IMAGene
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.