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Must Be in the Genes
genetic cancer
Knowing how a cancer diagnosis or genetic information affects insurance.

When a person has cancer, they may want to know what federal laws protect against genetic discrimination. One law that many associate with privacy of medical information, Health Insurance Portability and Accountability Act (HIPAA), prohibits group and individual health insurance plans from using genetic information to determine insurance eligibility. The Affordable Care Act (ACA) also prohibits health insurance companies from basing coverage decisions on medical history or pre-existing conditions, as well as protects against genetic discrimination during eligibility review.

The Genetic Information Nondiscrimination Act of 2008 (GINA) prohibits genetic discrimination in both employment and health insurance. Under GINA, genetic information is defined as an individual’s family medical history, as well as the results of a genetic test for either the individual or their family member. Genetic information also includes engaging in genetic counseling, participating in genetic research and utilizing other genetic services.

A person’s current health status or diseases and conditions they’ve developed are not genetic information. For example, if a person has taken the BRCA gene test to determine risk of breast cancer, this is genetic information. However, if the individual has been diagnosed with cancer, the cancer diagnosis itself is not genetic information, even when the breast cancer may be hereditary.

Health insurance companies are not allowed to deny or reduce coverage or charge more based on a person’s genetic information. Additionally, health insurance companies cannot collect genetic information from an individual, meaning asking customers about genetic test results, family medical history, use of genetic services, or participating in genetic research is off the table. Health insurance companies can also neither request nor require an individual to take a genetic test, nor purchase an individual’s genetic information.

There is one exception, however, as to when health insurance companies can ask for genetic information in order to make a decision about paying for a requested procedure. The insurer is allowed to ask for the minimum amount of information needed to determine whether the procedure is medically necessary. For example, if an individual with a genetic predisposition for colon cancer is asking their insurance company to pay for regular colonoscopies at an earlier age than normal, the insurance company can ask for genetic information to show why this is medically necessary. Under GINA, genetic information cannot be considered a pre-existing condition.

GINA applies to group health plans, such as those that you get through your employer, and to individual plans. It also applies to Medicare supplemental policies, also known as Medigap policies. However, GINA does apply to the Veterans Health Administration (VHA), the Indian Health Service (IHS), the TRICARE military health system or the Federal Employee Health Benefits Program (FEHBP), although other laws provide protection. For example, the U.S. military and the Veterans Health Administration have internal policies that provide protections similar to GINA. GINA also does not apply to life, long-term care or disability insurance. Additionally, individuals in the FEHBP are protected by requirements that all participating insurers and plans accept all enrollees regardless of health status.

GINA applies to employers with 15 or more employees. It also includes employment agencies, labor organizations and joint labor-management committees. GINA covers some federal employees, but not all. Additionally, the enforcement provisions of GINA do not necessarily apply to federal agencies.

As mentioned earlier, GINA prohibits an employer from discriminating against an employee because of genetic information. GINA regulations make it clear that the legislation applies to applicants and former employees, as well as current employees.

Examples of discrimination that someone may encounter in the workplace include firing or failing to hire an employee based on genetic information, or discriminating with respect to compensation, terms and conditions due to genetic information. Other discriminatory acts include failing or refusing to refer an individual for employment; excluding or expelling a member from the organization; causing or attempting to cause an employer to discriminate against a member in violation of this Act; or discriminating against an individual in admission to, or employment in, any program established to provide apprenticeships or other training or retraining.

Additionally, GINA does not allow limiting, segregating or classifying employees because of genetic information in any way that would deprive such individuals of employment opportunities or adversely affect their employee status. Finally, under GINA, an employer is prohibited from requesting, requiring or purchasing an employee’s genetic information. There are, however, a number of exceptions to this rule. State laws regulate supplemental or voluntary insurance like life, disability and long-term care insurance, and many states also prohibit genetic information in these supplemental policies. For additional information, contact your state’s department of insurance. For more information about genetics and cancer more generally, visit the American Cancer Society’s information page about the topic.


Editor’s Note: Learning your rights and how to enforce them can help you protect yourself in the present and prevent legal problems in the future. For more tips or answers to cancer-related legal questions, contact the CLRC at 866-843-2572 or visit cancerlegalresources.org.

Shelly Rosenfeld is Co-Director at the Cancer Legal Resource Center (CLRC), a national program of Disability Rights Legal Center in Los Angeles, California. CLRC provides free education and resources on cancer-related legal questions to cancer survivors, caregivers and health care professionals.

Disclaimer: Through this article, the author is not engaged in rendering any legal or professional services by its publication or distribution. It is not intended to be legal advice or establish an attorney-client relationship.

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