What Is Genetic Discrimination?

Your DNA should shape your medical future—not your career, insurance, or legal rights. As genetic testing becomes more common, concerns about genetic discrimination are rising. That’s the reality of genetic discrimination, where individuals face unfair treatment based on their DNA rather than their actual health.

Employers and insurers may attempt to use genetic information to make decisions about hiring, promotions, or coverage despite federal laws that prohibit such practices. Understanding your rights under the Genetic Information Nondiscrimination Act (GINA), the ADA, and HIPAA can help you take action if you suspect discrimination. A lawyer can help you challenge unlawful practices and protect your future if you’ve been affected.

What Are the Legal Protections Against Genetic Discrimination?

The Genetic Information Nondiscrimination Act of 2008 (GINA) prohibits genetic discrimination in health insurance and employment. It protects people from unjust or unfair treatment solely based on their family medical history or genetic test results. The law does not extend to life insurance, disability insurance, or long-term care insurance.

Title I of GINA prevents health insurers from using genetic information to deny coverage or charge higher premiums for insurance coverage based on a person’s genetic predisposition to a disease. Health insurance companies cannot require genetic testing to determine eligibility or coverage terms, and genetic information cannot be considered a preexisting condition.

Title II of GINA protects individuals from genetic discrimination during employment decisions. Employers cannot use genetic information in hiring, firing, or promotion decisions. They cannot request, require, or purchase genetic information from employees or job applicants. Any genetic information an employer does receive must be kept confidential and separate from other personnel records. Genetic conditions cannot be used to determine benefits or other workplace conditions.

The Americans with Disabilities Act (ADA) also provides discrimination protections. Under the ADA, employers are prohibited from discriminating against employees or job applicants with disabilities. This can include individuals whose genetic conditions lead to disabilities.

Under the Health Insurance Portability and Accountability Act (HIPAA), an individual’s health privacy is protected. Genetic data is included under the umbrella of medical information. Covered entities such as healthcare providers, employers, and insurers must follow HIPAA. They are prohibited from disclosing genetic information without the person’s consent.

Federal Protections Against Genetic Discrimination by Health Insurance Companies

Insurers cannot discriminate based on an individual’s genetic predisposition to diseases. Genetic health information cannot be used when underwriting policies, setting premiums, or making coverage decisions.

However, health status is different from genetic information. Health status refers to a current health or medical condition, while genetic information indicates the possibility of an individual having a future medical condition. For example, a health insurance company can ask if you currently or previously had breast cancer. It cannot ask for genetic testing to determine a genetic predisposition for breast cancer.

Federal Protections Against Genetic Discrimination in the Workplace

Employers cannot discriminate based on genetic information or the genetic information of an employee’s family members. This law ensures that genetic predispositions to certain diseases or conditions, such as cancer, Alzheimer’s, or heart disease, cannot be used to decide an employee’s employment status or opportunities.

Employers cannot refuse to hire someone based on their genetic information. Employees cannot be terminated or disciplined for their genetic information. Genetic information cannot be used to determine eligibility for promotions, raises, or bonuses. Employers cannot assign employees to certain tasks based on their genetic predisposition to certain conditions. Under the Family Medical Leave Act (FMLA), employers can request family medical history when an employee is requesting leave under the FMLA for a family member’s illness, but this is typically restricted to information directly related to the leave request.

GINA’s protections apply to employers with 15 or more employees, though state anti-discrimination laws may extend to employers with fewer employees. Genetic information may be relevant in certain cases if there’s a collective bargaining agreement (union contract), but it must be limited and subject to legal oversight.

Employers may obtain genetic information if the employee voluntarily provides it as part of a health screening program or wellness program. Still, the information cannot be used for discriminatory purposes. Employers offering wellness programs or health assessments must ensure that any genetic information obtained voluntarily cannot be used to penalize or discriminate against employees. Genetic information may be collected in voluntary programs (such as those assessing health risks).

State Law Protections

Several states have enacted their own protections that expand the protections covered by GINA. For example, the California Genetic Information Nondiscrimination Act (CalGINA) creates stricter rules governing the use of genetic information in employment and insurance decisions. New York has laws that create greater privacy protections. Minnesota has laws that prohibit the use of genetic information in health insurance underwriting and employment decisions. Massachusetts provides specific privacy laws regarding the use of genetic information in health insurance and employment contexts. Washington provides stronger protections in employment by explicitly addressing genetic testing in the workplace and adding further safeguards against misuse.

In addition to broader protections, state laws may extend these protections to include employers with fewer than 15 employees.

How to Bring a Claim for Genetic Discrimination

The Equal Employment Opportunity Commission (EEOC) is the primary agency responsible for enforcing GINA. The EEOC investigates complaints of genetic discrimination in employment, including discriminatory hiring, firing, promotions, and other employment decisions based on genetic information. Individuals who believe they’ve been discriminated against based on genetic information can file a charge with the EEOC within 180 days of the alleged discrimination. If the EEOC determines employment discrimination has occurred, they can pursue remedies, including compensatory damages, back pay, and injunctive relief.

The Department of Labor (DOL) plays a role in enforcing federal laws related to employment practices. It may assist in investigating and taking action on workplace discrimination claims if they overlap with other labor law violations. It also oversees the Family and Medical Leave Act (FMLA), which can intersect with genetic discrimination if an employee’s genetic information is used improperly in deciding leave or benefits. The National Labor Relations Board (NLRB) could be involved if the genetic discrimination claim involves union activities or collective bargaining agreements.

The Department of Health and Human Services (HHS) enforces protections related to the Health Insurance Portability and Accountability Act (HIPAA), which also covers genetic information. HHS may become involved if health plans or insurers misuse genetic information.

States like California, New York, and Illinois have additional protections beyond federal law, and claims may be with state-level agencies for violations of state laws regarding genetic discrimination. State agencies often have their own filing deadlines and procedures, which can be shorter than the federal 180 days—some states require complaints to be filed within 30 to 90 days, meaning it’s important to legal help in your specific jurisdiction.

Filing a Discrimination Claim

When filing a discrimination claim, you need to have supporting evidence and documentation of the discrimination. Keep detailed records of all interactions with employers or insurers that may involve genetic information, including emails, letters, and notes from phone calls.

Document any employment decisions (for example, hiring, firing, promotions) that you believe were influenced by genetic information, including written or verbal statements made by the employer. Gather any relevant medical records or genetic test results that demonstrate the presence of genetic information that may have been used inappropriately in the workplace.

You should also collect documentation from family members if their genetic information was improperly considered. Witnesses who can corroborate the claim of genetic discrimination can be crucial. This may include coworkers, supervisors, or medical professionals who can confirm that genetic information was used improperly. Company records, such as performance reviews, hiring decisions, or medical examination results, could be used to show that genetic information was improperly factored into employment decisions.

Find Legal Help

While genetic information can provide valuable insights into health risks and medical decisions, it should never be used as a basis for discrimination. Genetic discrimination can have serious consequences, affecting everything from employment opportunities to access to healthcare. Federal and state laws work to prevent misuse of genetic information in employment and healthcare. Navigating these laws and filing a claim for discrimination can be complex. If you suspect you have been denied coverage, employment, or other opportunities due to genetic information, visit the Super Lawyers directory to find a discrimination law attorney in your area.