What are the implications of these genetic test results on health insurance coverage or employment?
The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law. Title I of GINA makes it illegal for health insurers to use genetic information to determine eligibility or make decisions related to coverage, underwriting or premium-setting.
Health Insurance
A positive test result indicates an increased risk of developing disease, such as cancer or heart disease. We recommend individuals with an increased risk for these conditions consult with their healthcare providers to discuss medical management options for prevention or early detection. Health insurance companies may require information about disease risk in order to provide coverage for such medical management.
The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law. Title I of GINA makes it illegal for health insurers to use genetic information to determine eligibility or make decisions related to coverage, underwriting or premium-setting. The protections of GINA extend to private health insurance plans, Medicare, Medicaid, Federal Employees Health Benefits, and the Veterans health Administration. Limited protections are offered for the U.S. Military's TRICARE insurance program.
GINA prohibits health insurance companies and group health plans from requesting participants' genetic information from their research participation with Helix. However, as part of participation in the Helix Research Network, CDC T1 test results related to risk for hereditary cancer and familial hypercholesterolemia will become part of the participant's medical record through the collaboration with their health system. Health insurance companies may request results that have been put into a participant's medical record. However, health insurance companies and group health plans are prohibited from using genetic information when making decisions about eligibility for coverage or insurance premiums.
In addition, the Affordable Care Act of 2010 (“ACA”) prohibits health insurance companies from refusing to cover or charging participants more due to a “pre-existing condition.” If participation in the study leads to the eventual diagnosis of any particular condition (as opposed to simply a genetic predisposition to such a condition), the ACA prohibits eligibility and pricing discrimination based on that diagnosis.
Employment
GINA makes it illegal for employers to make decisions about whether to hire or fire employees based on genetic information. The law also prohibits labor organizations from discriminating against an individual based on genetic information. Note: GINA’s employment protections do not extend to all employees or in all circumstances. Additional information can be found here.
To learn more about GINA and additional federal and state protections, please visit the following websites:
https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination
https://geneticalliance.org/policy/genetic-discrimination
http://www.ginahelp.org/
Life, Disability and Long-term Care Insurance
If a participant already has a life, disability or long-term care policy, new information about their health (including genetic information) generally may not be used to deny continuing coverage under those policies. When seeking new or additional coverage, some companies may require a review of medical information. This may include any information in your medical record, indcluding your age and conditions, such as diabetes, obesity, heart disease, cancers etc. Genetic information is returned to the medical record as part of participating in this study and may also be used to make coverage decisions about new or additional policies. Though GINA does not offer protection for life, disability or long-term care insurace, some states have additional protections for these types of insurance, so participants may want to learn more about laws in their state.