Consumer Health Resources: Genetics
This page will serve as a resource for members and care givers of the Western New York community interested in consumer health information.
Last Updated: Oct 25, 2024 12:18 PM
NOTE:
Health Sciences Librarians do not provide medical advice or recommend healthcare practitioners. Patients should discuss their health situation with their healthcare providers.
Genetics Resources
- Genetic and Rare Diseases Information Center (GARD)(Offers information about genetic testing and counseling services as well as easy to understand medical description of over 6500 conditions. Also connects users with organizations specific to a particular disease as well as clinical trials and research studies. Families can also find financial help in the form of financial aid and assistance with travel costs.
- Genomics Education WebsitesA comprehensive list of sites providing everything from the basics of DNA, genes and genomes to testing and counseling. From the National Human Genome Research Institute (part of NIH).
- MedlinePlus GeneticsProvides basic information about genetics in layperson language with links to trusted online resources. Major sections to browse include Genetic Conditions, Genes, Chromosomes & mtDNA, and Help Me Understand Genetics. The last section includes Cells and DNA, Mutations and Health, How Genes Work, Inheriting Genetic Conditions, Genetics and Human Traits, Genetic Consultation, Genetic Testing, Direct-to-Consumer Genetic Testing, Gene Therapy, Genomic Research, and Precision Medicine). Illustrations provide visual assistance in understanding a complex topic. Links to related topics include Genes and Gene Therapy, Genetic Disorders, and Newborn Screening.
- MedlinePLus Genetics/Birth DefectsUnder MedlinePlus Health Topics tab, the Genetics/Birth Defects section offers links to a wide variety of inherited disorders as well as genetic counseling, disorders, and testing. A search under "Genetics" can be refined by type or format, offers a basic overview, and links to thousands of web sites and articles.
- My Family Health PortraitA tool from the Surgeon General that families can use to record their family health history, learn about your risk for inherited conditions, and have an easily shareable record that can be updated over time. Also compatible with electronic health records for easy inclusion with your family doctor's record. Information is protected through HIPAA.
- National Organization of Rare Diseases (NORD)Comprehensive information on over 1200 rare disease, with information on their inheritance, the genes and processes involved, and current treatments. Links to resources for patients and families as well as clinicians and researchers.
- yourgenomeProduced by the Wellcome Genome Campus in the UK, yourgenome.org offers five topic areas covering the basics of DNA, stem cells, and genomes as well as the methods used to sequence genomes, how genomics is used to treat disease, ethics and moral issues in society, and covers both human, other animal, and plant domains.
Includes videos, paper-based activities, interactive apps, games and animation