Privacy in Genetic Screening
From GINA to HIPAA to state-level protections, here's how your child's genetic information is legally protected and how GeneSprout safeguards your data.
Federal and state legislation
GINA stands for the Genetic Information Nondiscrimination Act of 2008. This federal legislation was signed into law in May of 2008. It protects individuals against discrimination based on their personal genetic information, applying both to employment and access to health insurance coverage. It applies to the health insurance provided by U.S. employers who have 15 or more employees.
Our genetic information informs and empowers us about our future health. GINA legally protects our genetic data from being improperly used by employers and health insurers. Employers and health insurers cannot ask about genetic risks or use genetic information to make employment or insurance decisions. GINA was designed to ensure families feel confident when taking advantage of the benefits provided by genetic screening as part of their medical care.
While GINA does not apply to other types of insurance such as life, disability or long term care, states have been leading the way to provide stronger protections in these areas. Specifically, in July 2020, Florida became the first state to enact a law that extends GINA type protections to life insurance, disability insurance and long term care insurance.
In Florida, these types of insurers cannot require genetic data or use genetic test results in any manner. Insurers cannot deny coverage, limit coverage, cancel coverage, or set different premium amounts based on genetic information.
Privacy of genetic information
Privacy of your child’s genetic information is paramount at GeneSprout. We are compliant with applicable healthcare data privacy laws including the Health Insurance Portability and Accountability Act (HIPAA). The data that we collect from your family is primarily used to provide GeneSprout products and services and for administrative or operational purposes. Our full privacy policy is located here.
This article is for informational purposes only and is not a substitute for professional medical advice. If you have concerns about your child’s health, speak with your pediatrician.