Employers: Genetic Law May Require Changes
Posted on Monday, March 18, 2019 Share
Ensure your business complies with laws and regulations. The federal Genetic Information Nondiscrimination Act (GINA), which went into effect back in 2009, protects employees from discrimination based on their genetic information.
Regulations Strengthen GINA
Interim final regulations pertaining to group health plans covered under GINA were effective as of December 7, 2009. Some highlights:
Definitions. The interim final regulations contain several definitions that are important in applying GINA provisions. Two key examples are:
1. Genetic information is defined as information about an individual's genetic tests (or those of a family member) and the manifestation of a disease or disorder in family members. It also applies to requests for, or receipt of, genetic services or participation in clinical research using genetic services. Genetic information does not include gender or age.
2. A family member is defined as an individual who may become eligible for coverage because of his or her relationship to the participant relatives of the individual or dependent of the individual (including relatives by marriage or adoption).
Plan enrollment. GINA prohibits requests for genetic information prior to enrollment in a plan for underwriting purposes The regs clarify that a request is considered "prior to enrollment" if made before the effective date of plan coverage. Therefore, health risk assessments (HRAs) offered prior to enrollment cannot request genetic information, such as family medical history.
Disease management or wellness programs. Although these programs do not typically require genetic testing, some require participants to complete an HRA prior to enrollment. The regulations explain when a program requiring an HRA prior to enrollment violates the law, given the broad definition of "genetic information."
Many programs offer participants reduced premiums or other incentives to complete HRAs, which ask for family medical information.
Under the regulations, a program cannot provide rewards or penalties for completing an HRA asking for genetic information. As a result, plan sponsors and administrators should review their wellness and disease management programs. You may need to change your approach to comply with the law.
The law also bans group health insurance plans and health carriers from making coverage and premium decisions based on an individual's genetic information — or that of a family member.
Federal regulations have clarified certain aspects of GINA (see right-hand box).
Why Protect Genetic Information?
"Genetic tests look for alterations in a person's genes or changes in the level of key proteins coded for by specific genes," according to the National Human Genome Research Institute.
Abnormal results on these tests, which examine DNA, chromosomes and enzyme levels, could mean that someone has an inherited disorder.
However, a genetic predisposition toward heart disease, cancer, diabetes or other illnesses does not mean a condition will develop. It just means the risk is higher.
Genetic tests are used in diagnosing, treating and preventing inherited health conditions. Medical experts expect these tests to become a routine part of health care in the future.
As science and technology has advanced, genetic testing has become more available to the public. The GINA law was needed, according to the National Human Genome Research Institute, because concerns about discrimination "might keep some people from getting genetic tests that could benefit their health."
The law also enables people to take part in research studies without fear that DNA information might be used against them in obtaining health insurance or in the workplace.
The new protections relating to health insurance were effective for plan years beginning after May 20, 2009. The non-discrimination in employment provisions were effective beginning November 21, 2009.
State Laws May Provide Different Protection
Before the federal law, states began passing laws prohibiting discrimination based on an individual's genetic information. Currently, more than 30 states have genetic nondiscrimination laws.
The new federal law does not weaken the protections provided by state laws. It sets a minimum standard of protection that must be met in all states.
What Is Not Included?
GINA does not cover life insurance, disability insurance and long-term care insurance. In addition, it does not cover members of the military.
Genetics Joins Other Employment Protections
Under the law, genetics has joined the group of protected classes in the list of personal factors and features protected from employment discrimination by various U.S. federal laws.
A typical employer's Equal Employment Opportunity employee handbook policy currently pledges to prohibit discrimination in employment decisions based on an applicant's or employee's race, color, sex, pregnancy, religion, national origin, citizenship, physical or mental disability, age, military service or veteran status.
With passage of GINA and the accompanying regulations, employers will need to add genetics to the list (if they have not already done so because of state law). Employers should update their manuals to reflect the latest developments.
Don't limit your list of protected classes, factors and features to those in federal discrimination laws. Check your state and local laws too.
In some states and localities, classes, factors and features protected by laws include sexual orientation, marital status, gender identity, familial status and political affiliation.
For more information, consult with your employment attorney.
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