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Genetic Discrimination: The Dark Side of Genetic Testing

Published on Mar 22, 2023   -  4 min read


Genetic discrimination occurs when an employer or insurance company treats someone differently due to a gene mutation that causes an inherited condition.


Genetic discrimination is the unfair treatment of groups or individuals based on genuine or perceived genetic problems, genetic risk factors, genetic predispositions (increased chance of developing the disease) connected to health and disease traits or heritage. It occurs when an employee or insurance company treats somebody differently because they have a gene mutation that causes or raises the risk of an inherited condition. People considering genetic testing often start worrying about discrimination. Numerous federal and state laws protect against genetic discrimination. A federal law known as the Genetic Information Nondiscrimination Act (GINA) is specifically designed to safeguard people from this discrimination. Let us discuss this in more detail below.

What Is Genetic Information?

Genetic information contains information about an individual's genetic testing, the individual's family members, and information regarding the manifestation of the disease. In addition, genetic information includes family medical history, as it is used to assess a person's chances of developing a disease or condition in the future.

Can Genetic Information Lead to Discrimination?

The law prohibits discrimination based on genetic information in any area of employment, including hiring, firing, salary, training, promotions, layoffs, fringe benefits, job assignments, or any other term of employment. Since genetic information has nothing to do with a person's current ability to work, an employer may never use it to decide whether or not to hire someone.

What Are a Few Examples of Genetic Information Discrimination?

Genetic information discrimination happens when an employer uses genetic data to make an employment decision. For instance, it is illegal for an employer to reject a candidate because his relative has breast cancer or any other disease. The employer is concerned that the candidate might develop the disease, raising the employer's health insurance costs. In addition, it is prohibited for an employer to conduct an Internet search to learn about the medical history of an employee's family (medical conditions of relatives).

What Is the Genetic Information Nondiscrimination Act?

The Genetic Information Nondiscrimination Act of 2008 (GINA) protects people against genetic discrimination by employers and health insurers based on genetic information. GINA is divided into two titles: Title I, which forbids genetic discrimination in health insurance, and Title II, which forbids it in the workplace (employment). GINA's health insurance protections apply to private health insurers (group or individual), Medicare, Medicaid, Federal Employees Health Benefits, and the Veterans Health Administration. This act does not apply to disability, life, or long-term care insurance policies. Some individual states may have added protections for these types of insurance that are not protected by federal law.

What Are the Protections Under GINA Title I?

  • Title I of GINA prohibits insurance providers, including groups and individuals, from using a person's genetic data in determining premiums or eligibility. It also forbids health insurers from using or requiring a person to undergo a genetic screening to obtain genetic information for underwriting decisions. This section of the law became effective on May 21, 2009.

  • Through the HIPAA of 1996 (Health Insurance Portability and Accountability Act) and the Social Security Act, Title I implements the Employee Retirement Income Security Act (ERISA), Internal Revenue Code (IRC), and the Public Health Service Act (PHSA) to prohibit health insurers from using genetic discrimination.

What Are the Protections Under GINA Title II?

  • Title II of GINA bans employers from using an individual's genetic information in making employment judgments such as hiring, firing, work assignments, or other employment terms. It also forbids employers from seeking, obtaining, or acquiring genetic information on an individual or family member. This section of the law became effective on November 21, 2009.

  • The Equal Employment Opportunity Commission (EEOC) implements Title II of GINA, which forbids employers from seeking genetic information from applicants for employment and using genetic information in employment decisions.

How Does GINA Support Genetics Research?

GINA protects the confidentiality of genetic information obtained via research and prevents it from being misused. In addition, the law assures that research volunteers can participate in studies without affecting their employment or health insurance. The NHGRI (National Human Genome Research Institute) and OHRP (Office of Human Research Protections) provide resources for researchers and Institutional Review Boards about the law and details to provide study participants.

What Are the Current Laws Concerning Genetic Discrimination?

HIPAA - The Health Insurance Portability and Accountability Act of 1996 is a federal law protecting sensitive health information from disclosure either without consent or as expressly permitted by the law. It aims to strike a balance between using health information for essential and helpful medical activities and proper privacy protection. HIPAA generally pertains to specific teams and people known as "covered entities." The covered entities include hospitals, health insurance providers, and companies that need to access specific health data.

The privacy rule also permits sharing of anonymous or de-identified health data. Genetic information is considered health information under the 2013 amendment to HIPAA, which prohibits health insurers from using it in any decision-making process involving health insurance benefits, eligibility for benefits, or calculating premium costs for a health plan.

Affordable Care Act - A major provision of the Affordable Care Act of 2010 is to establish a "guaranteed issue" offering insurance in either the group or individual market that provides coverage for all individuals who request it. In addition, the law prohibits health insurance providers from denying coverage, thereby discriminating against patients with genetic diseases because of "pre-existing conditions." Finally, it provides protections for individuals affected by hereditary diseases by stating that some health insurers may alter premiums based on a few specified parameters, such as age or geographic location, but prohibiting premium adjustments based on medical problems.

The Americans with Disabilities Act (ADA) - ADA forbids discrimination based on disability in employment, government services, accommodations, and communications. This act forbids discrimination based on genetic data about illness, disease, or other diseases.


The possibility of genetic discrimination exists in every social domain. It includes commercial deals in which one party has a financial stake in the other party's future health (e.g., mortgages, commercial loans). It also includes the broad noneconomic domain where interest is in predicting an individual's existing or future health or behavior. Individuals can take action if they believe their family member's genetic health information rights have been violated. Contact the Equal Employment Opportunity Commission for any concerns about workplace genetic discrimination, and consult the state's insurance commissioner if you have any concerns about health insurance.

Last reviewed at:
22 Mar 2023  -  4 min read




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