Family History, Genetic Discrimination Laws, Family Support
Genetics and family history are becoming more and more important in all areas of healthcare. The information gathered from the family history may shape a person’s healthcare plan and/or suggest that genetic testing may be useful. “Knowing your family health history can save your life. The earlier you know which health conditions run in your family, the easier it is to develop prevention plans with your doctor.” –Dr. Richard H. Carmona, US Surgeon General
GENETIC DISCRIMINATION LAWS
Some individuals worry about their employers, their health insurance company, or other types of insurance companies using the information gained from genetic testing against them. Using the information in this manner is called genetic discrimination. Fortunately, there are federal laws (and in some cases state laws) in place designed to help protect individuals from genetic discrimination.
With this combination of laws, most New York State residents are well protected from genetic discrimination with regard to health insurance and employment. At this time, in New York State, these laws do not cover areas such as life insurance, disability insurance and long-term care insurance.
***Please note that laws may change over time and a Genetic Counselor will discuss the current regulations at the time of a consultation
Please see this overview of genetic discrimination legislation from the National Human Genome Research Institute for details on the specific protections provided: Genome Genetic Discrimination
Other Useful Links
Genetic Alliance resource on GINA: Genetic Information Nondiscrimination Act – Help
GINA information from the Department of Health and Human Services: The Genetic Information Nondiscrimination Act of 2008 – Information for Researchers and Health Care Professionals
FAMILY SUPPORT GROUPS
“When confronted by illness, patients seek professional help and advice from their doctors, and also rely on support from family members, peers and fellow patients. To this end several societies and organizations, specializing both in general health improvement as well as illness-specific objectives, offer support groups as integral components of treatment plans for patients with genetic disorders and for their families. These support groups may offer a variety of services, including educational materials, consultations, group therapy, team building activities, and other resources to teach individuals how to cope and adapt to the lifestyle that is often dictated by their illnesses.”
WHO Genomic Resource Center
Various national support group links are provided below. These resources can help you locate a support group for a specific condition.