According
to the NIH, "genetic discrimination occurs when people are treated
differently by their employer or insurance company because they have a gene
mutation that causes or increases the risk of an inherited disorder. Fear of
discrimination is a common concern among people considering genetic
testing."
What legal protections against genetic discrimination exist? Are positive genetic test results considered a pre-existing condition? Can results from DTC (direct-to-consumer) tests such as 23 And Me affect insurance premiums? These are questions you may be wondering if you or a family member or friend is considering genetic testing. This is a complicated issue and I hope to address some of these concerns in future posts.
Federal Protections:
GINA: The Genetic Information Nondiscrimination Act
Protections under GINA:
Congress passed the
Genetic Information Nondiscrimination Act (GINA) in
2008. This law prohibits health insurers from discrimination based on the genetic
information of enrollees (Title I.) Genetic information cannot be used by health
insurers to make eligibility, coverage, and premium-setting decisions. For
example, if you undergo genetic testing and test positive for a gene mutation
that increases cancer risk, your health insurer cannot use this information
against you. Additionally, health insurers may not request or require
individuals or family members to undergo genetic testing or provide genetic
information.
GINA also prohibits genetic discrimination in employment (Title II.) Employers may not use your genetic information when making decisions about hiring, firing, promotions, pay etc. However, GINA does not apply to companies with fewer than 15 employees.
Limitations of GINA:
GINA
"does not cover long-term care insurance, life insurance, or disability
insurance" (NIH.) GINA does not protect individuals
who receive their insurance through the Federal Employees Health Benefits, the
Veterans Health Administration, the U.S. Military (TRICARE), and the Indian
Health Service. Some of these programs have policies prohibiting
or restricting genetic discrimination, but if this clause applies to you, you
should research your health insurers policies before undergoing genetic
testing.
Image Source: geneticfairness.org
HIPAA:
With the
passage of GINA, HIPPA (Health Insurance Portability and Accountability Act)
was amended to state that genetic information is considered
health information and as such, cannot be used by health insurers to make
decisions about insurance benefits, eligibility for benefits, or calculations
of premiums.
The
Affordable Care Act (ACA):
GINA no
longer protects you when you begin to develop symptoms or are diagnosed with a
medical condition. For example, GINA protects you from health insurance
discrimination when you test positive for the mutation for Huntington's, but it
does not protect you when you begin to show symptoms for
Huntington's or are diagnosed. The Affordable Care Act commonly referred to as "Obamacare", prevents
insurance companies from denying coverage or charging more based on
pre-existing conditions. Without this provision of the ACA, millions of people
with medical conditions (many of which are genetic) would lose protection. With
our current political climate, this is definitely a topic about which to remain
informed.
For more information, please refer to the following sources:
In future posts, I plan to address state policies regarding the protection of genetic information and the
privacy and insurance risks related to direct-to-consumer (DTC) genetic tests.
Stay tuned!!
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