Genetics and Health
More and more attention is being focused on the genetic connections to various health issues and diseases, and often caregivers as well as family members struggle with the terminology and meaning of various genetic tests.
- To understand the basics of genetics and how genes (the building blocks of humans) work, the following resources are offered as a primer to basic concepts. Information and a primer on the role of DNA in genetic disorders is available at DNA from the Beginning: An Animated Primer
- Creating a family health history is vital in early detection and prompt treatment of diseases that may have a genetic basis. The Department of Health and Human Services has an online tool to assist consumers to explore their family health history (available in English, Spanish, Portuguese and Italian) at https://familyhistory.hhs.gov/fhh-web/home.action
- A basic overview of genetic disorders is available at Genetics Disorders from MedlinePlus – National Library of Medicine/National Institute of Health. Topics covered in this resource include questions and answers about genetic disorders, a genetics and rare disorders information center, how genetic conditions and disorders are diagnosed, and anatomy/physiology of chromosome disorders
- Genetics Home Reference/glossary of terms has a comprehensive dictionary of terms in alphabetic order, information on the Human Genome Project as well as information on specific conditions that have a genetic basis
- National Society of Genetic Counselors – Genetic counselors are specialists in medical genetics and counseling that can assist patients and their physicians to understand complicated genetic information to better make informed decisions about their care. The database includes a listing of board certified counselors who can review genetic tests and make recommendations.
- NORD – The National Organization for Rare Disorders has a database of over 1200 rare disorders and diseases for patients and family members. A brief description of the disorder is given along with resources on support services focused on the specific condition.
- Clinical Trials for Genetic Disorders – This National Institutes of Health site is a registry and results database of publicly and privately supported clinical studies with a search engine for specific conditions including links to principal investigators.
- The National Human Genome Research Institute has information on a variety of topics related to legal, financial and ethical issues related to genomics.
Use these tools not only to inform yourself about this emerging field in health care, but also feel free to share these resources with patients and family members! Carol Ann Attwood Patients’ Librarian Mayo Clinic Arizona