Genetic Testing: Privacy, Insurance, and Work

One federal law does most of the work here. It is called GINA. The full name is the Genetic Information Nondiscrimination Act. Congress passed it in 2008.

GINA protects you in two places:

• Health insurance
• Your job

GINA does not protect you in these places:

• Life insurance
• Disability insurance
• Long-term care insurance
• Jobs at firms with fewer than 15 staff
• The U.S. military

Most of the trouble sits in that second list. Here is what to do about it.

GINA stops health insurers using genetic information against you. They cannot use it to decide whether to cover you. They cannot use it to set your price.

The National Human Genome Research Institute, or NHGRI, lists the plans covered:

• Private insurers
• Medicare
• Medicaid
• The Federal Employees Health Benefits Program
• The Veterans Health Administration

At work, the Equal Employment Opportunity Commission enforces GINA. The EEOC bars the use of genetic information in hiring, firing, pay, and promotion. It also bars harassment and revenge for complaining.

The EEOC puts it in one line. An employer may never use genetic information to make a job decision. It is not relevant to whether you can do the work today.

This is the biggest gap. People find out too late.

NHGRI says it plainly. GINA's health insurance protections do not cover long-term care insurance, life insurance, or disability insurance. It adds that some states have their own laws that do.

So in most of the country, a life insurer may lawfully ask about a genetic test result and use it.

People handle this in different ways. Some review their life, disability, and long-term care cover before testing rather than after. Others decide that knowing is worth more. A genetic counselor can talk it through, and it is a normal thing to raise. Check your own state's law, because states differ.

This one matters most if you are reading during treatment.

GINA's definition of genetic information covers three things. Your genetic tests. Your family members' genetic tests. And disease that has shown up in your family members.

Look at what is missing. The disease you already have.

GINA is a law about risk. It is not a law about illness. If you have been told you have cancer, GINA is mostly not your law. A different one is.

The Americans with Disabilities Act, or ADA, is what covers a person who actually has cancer.

The EEOC is firm here. It says people with current cancer, cancer in remission, or a history of cancer should easily be found to have a disability under the ADA. The reason given is that they are limited in normal cell growth.

The ADA covers private firms with 15 or more staff. It also covers state and local government.

That brings a right to reasonable adjustments at work, known as accommodations. The EEOC lists examples:

• Leave for appointments, or to have and recover from treatment
• Breaks, or a private space to rest or take medicine
• A changed schedule or a shift swap
• Permission to work from home
• A change in office temperature
• Permission to use a work phone to call doctors
• Moving minor tasks to someone else
• A move to a vacant post

The EEOC also sets out when an employer may ask health questions. Before a job offer, it cannot ask about cancer or past treatment. After an offer, it may ask, if every applicant for that kind of job is asked the same. During the job, it may ask if there are work problems and a fair reason to think they are medical.

Your medical details must be kept private. The EEOC is clear that an employer cannot tell your coworkers you have adjustments for cancer.

One useful crossover. The EEOC warns that asking for family medical history in a documentation request may itself breach GINA.

Two blunt limits.

NHGRI states that GINA does not apply to firms with fewer than 15 staff. The ADA uses the same threshold. If you work somewhere small, neither law is behind you. State law may be. Check.

NHGRI also notes the U.S. military may use genetic and medical information in job decisions. TRICARE cover is limited too, because it is tied to military service.

GINA blocks genetic information being used against you. A separate law handles the diagnosis you already have.

HealthCare.gov states that all Marketplace plans must cover treatment for pre-existing conditions. No plan can reject you, charge you more, or refuse to pay for essential health benefits because of a condition you had before cover started. Once you are enrolled, a plan cannot drop you or raise your rates based only on your health. The same holds for Medicaid and CHIP.

One exception is worth knowing. Grandfathered plans are individual policies bought on or before 23 March 2010. They do not have to cover pre-existing conditions.

• Where will this result sit in my medical record, and who sees it?
• Will it be sent to my referring doctor, my family doctor, or anyone else?
• What does the lab do with my sample and my data afterwards?
• Does my state have its own genetic privacy law?
• If I want an adjustment at work, what does my employer actually need to be told?

On that last point. A request usually needs your functional limits and what would help. It rarely needs your genetic report.

Last, treat consumer kits with care. GINA governs health insurers and employers. It is not a general privacy law for testing firms. NCI also notes that as of January 2024, the only FDA-approved consumer test for inherited cancer risk covers three BRCA variants. That approach misses about 80% of cancer-causing BRCA variants.

• Genetic Discrimination and GINA — NHGRI
• Genetic Information Discrimination — EEOC
• Text of the Genetic Information Nondiscrimination Act of 2008 — EEOC
• Cancer in the Workplace and the ADA — EEOC
• Coverage for Pre-Existing Conditions — HealthCare.gov
• Genetic Testing for Inherited Cancer Risk — NCI