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Science has accelerated genetic research and testing in recent years, making several significant breakthroughs along the way.
What's in this Guide?
- The Definition of Genetic Information
- What is Covered by GINA?
- How State Laws and GINA Work Together
- Defining GINA’s Confidentiality of Genetic Information
- GINA Has Some Critics
- The Definition of Genetic Discrimination
- How to Prevent Genetic Discrimination
- How to Report a GINA Violation
- For More Information on GINA
Disclaimer: Before You Read
It is important to know that your genes are not your destiny. There are various environmental and genetic factors working together to shape you. No matter your genetic makeup, maintain ideal blood pressure and glucose levels, avoid harmful alcohol intake, exercise regularly, get regular sleep. And for goodness sake, don't smoke.
Genetics is a quickly changing topic. Read More...
To balance these advances with the American public’s right to privacy, Congress passed the Genetic Information Nondiscrimination Act (GINA) in 2008. The regulations that govern GINA took effect in December 2009.
GINA's protections are far-reaching. The following health insurance programs are all covered by GINA:
- Private health insurers
- Federal Employees Health Benefits
- Veterans Health Administration
- U.S. Military’s TRICARE
- Indian Health Service
GINA protects Americans from discrimination based on their genetic information in health insurance and employment.
One notable exception is that GINA does not cover people serving in the U.S. Armed Forces. However, members of the military are covered elsewhere.
It was also enacted as a way to lessen fears among patients who might otherwise be dissuaded from taking genomics-based clinical tests or volunteering to participate in the research necessary for the development of new tests, therapies, and cures.
To comply with GINA, genetic-related informed consent forms now include information on risks associated with participation in research projects. There is also a statement describing how the confidentiality of records will be maintained.
It should also be noted that before the ACA, HIPAA prevented a plan or issuer from imposing a preexisting condition exclusion based only on genetic information.
Under the ACA, plans are prohibited from excluding coverage or benefits due to any preexisting condition.
The Definition of Genetic Information
Genetic information includes 1:
- An individual's genetic services and test information
- Information about the genetic test information of a family member
- Family medical history
- Requests and the receipt of genetic services by an individual or a family member
- Genetic information about a fetus carried by an individual or family member
- Genetic information of an embryo legally held by an individual or family member using assisted reproductive technology.
Genetic services include genetic tests, genetic counseling, or genetic education.
Genetic testing includes an analysis of human DNA, RNA, chromosomes, proteins, or metabolites, if the analysis detects genotypes, mutations, or chromosomal changes.
Genetic testing does not include an analysis of proteins or metabolites directly related to a manifested disease, disorder, or pathological condition 2.
A manifested disease is a disease, disorder, or pathological condition that has been or could reasonably be diagnosed by a health care professional.
A disease is not manifested if the diagnosis is based primarily on genetic information.
Genetic information is essential for people who want to know and understand the health conditions that run in their family.
It also identifies certain health conditions or the possibility of children having certain health conditions. This resulting information can then be used for early preventative treatment and making healthy lifestyle choices and medical decisions in the future.
Patients and family members should have access to their genetic information as part of guaranteed access to their entire health records under HIPAA.
How this information is shared can sometimes lead to heated discussions. Patients who choose to share their genetic information with medical research may encounter resistance from genetic testing labs seeking to keep proprietary information confidential.
For example, Myriad Genetics owns many of the patents for the BRCA1 and BRCA2 genes from 20+ years ago. All people have these genes, but mutations can lead to a much higher incidence of breast, ovarian, prostate, and other cancers.
Seeking to protect their patents and data amassed from millions of patients during its extended monopoly as part of a proprietary database, Myriad has conducted numerous court battles to defend its interests.
However, in 2013, the U.S. Supreme Court struck down these patents in a case filed by the ACLA. The court concluded that Myriad had unlawfully claimed products of nature as intellectual property 3.
As a result, many labs now offer more comprehensive and less expensive testing of these genes.
The Department of Health and Human Services, which enforces HIPAA, continues to monitor this and other violations of the law.
What is Covered by GINA?
GINA’s Title I prohibits health insurers from engaging in genetic discrimination. It amended the following laws already on the books:
- Employee Retirement Income Security Act of 1974 (ERISA)
- Public Health Service Act (PHSA)
- The Internal Revenue Code (IRC), through the Health Insurance Portability and Accountability Act of 1996 (HIPAA, a finalized rule did not go into effect until 2013)
- The Social Security Act
- The Americans with Disabilities Act (ADA)
For the most part, GINA expands the genetic information nondiscrimination protections included in Title I of HIPAA.
Specifically, GINA does not allow health insurers to discriminate based on enrollees’ genetic information. Insurers can't use genetic information to make eligibility, coverage, underwriting, or premium-setting decisions.
Information includes medical histories, genetic test information, and the manifest disease in an enrollee or family members.
Title II pertains to employment. It is administered by the Equal Employment Opportunity Commission (EEOC). It prohibits employers from using genetic information in decisions affecting hiring, firing, pay, promotions, or job assignments.
It's also against the law for an employer to request, require, or purchase the genetic information of potential or current employes or their his or her family members.
GINA regulations governing employment took effect in January 2011and covers employers with 15 or more employees, including state and local governments.
It also prevents employers or other covered types of organizations from requiring or requesting genetic information or genetic testing as a condition of employment.
These organizations include employment agencies, labor organizations such as unions, apprenticeship programs, and joint labor/management training programs.
The law also provides for other workplace protections, as well.
An employer cannot retaliate against an employee for opposing employment practices that discriminate based on genetic information.
Retaliation is also prohibited against any employee who files a discrimination charge, testifies or participates in an investigation or litigation under GINA.
GINA also prohibits employee harassment based on genetic information. For example, it's unlawful to allow derogatory or offensive comments about a person's genetic information that is severe or pervasive enough to meet the test for a hostile work environment.
How State Laws and GINA Work Together
Several laws exist at the state level to protect citizens from genetic discrimination. The laws vary widely from state to state in scope and the amount of protection they provide.
The passage of GINA created a national minimum standard against genetic discrimination. All states must meet this minimum. GINA does not pre-empt states with more comprehensive protection.
For example, some states have passed laws more comprehensive that GINA to deal with other kinds of insurance, such as life, disability, and long-term care policies.
In 2011, California passed the "California Genetic Information Nondiscrimination Act" (CalGINA).
That extended protections even further to prohibit genetic discrimination in emergency medical services, housing, mortgage lending, education, and other state-funded programs 4.
Defining GINA’s Confidentiality of Genetic Information
GINA’s confidentiality provisions impact how employers deal with the collection of genetic information.Employers are prohibited from requesting, requiring, or purchasing genetic information about an employee.
That complicates matters when an employer asks about an applicant's or a current employee's health status. That might come into play if a person is seeking a reasonable accommodation under the ADA or is requesting sick leave.
An employer is required to warn an employee or applicant, or their health care provider, NOT to provide genetic information.
Also, employers must tell their healthcare providers NOT to collect genetic information when an employee takes part in an employment-related medical exam or screening physical.
Any genetic information an employer has about applicants and employees must be kept confidential. If it is in writing, the data must be kept separate from other medical files and personnel information.
There are six limited circumstances that an employer may disclose genetic information 5:
- To the employee or family member about whom the information pertains after a written request.
- To an occupational or other health professional researching compliance with specific federal regulations.
- In response to a court order, but only genetic information expressly authorized by the order.
- To government officials investigating compliance with Title II of GINA, if it is relevant to the investigation.
- In conjunction with the certification process for FMLA leave or state family and medical leave laws.
- To a public health agency regarding the manifestation of a contagious disease or disorder that presents an immediate hazard of death or life-threatening illness.
While there are strict restrictions on employers gathering genetic information on applicants and employees, there are also some exceptions to note as well.
An employer can request, require, or purchase genetic information in the following situations:
- Where the information is acquired inadvertently or accidentally.
- As part of a wellness program or genetic service that is voluntarily provided by the employer.
- In a family medical history to comply with certification requirements of the Family and Medical Leave Act, state or local leave laws, or individual employer leave policies.
- From commercially and publicly available sources such as newspapers, books, magazines, and public websites.
- As part of genetic monitoring that is required by law or provided voluntarily
- By employers who conduct DNA testing for law enforcement purposes such as a forensic lab or human remains identification.
It is also unlawful to retaliate against someone for opposing employment practices that discriminate based on genetic information or for filing a discrimination charge, testifying, or participating in any way in an investigation, proceeding, or litigation under GINA.
For example, it's unlawful for an employer to transfer an employee to a less prestigious position after the employee complains of an employer's attempt to acquire genetic information during a fitness for duty exam.
GINA also prohibits harassment based on genetic information, such as offensive and derogatory comments about an individual's genetic information that is severe or pervasive enough to create a hostile work environment.
GINA also impacts workplace wellness programs. Wellness programs often involve the exchange of health information between an employee and an employer or a third party administering the program.
Under GINA, an employer can request an employee's genetic information for purposes of a wellness program. But, employers cannot force employees to share that information if they don’t want to do so.
Under GINA, if an employee chooses to give genetic information to the wellness program, they cannot receive an additional reward for doing so.
Also, if an employee decides to withhold genetic information, they cannot be penalized.
GINA Has Some Critics
Although GINA passed the US House of Representatives by a 420-3 vote, signaling widespread partisan support, the law does have its share of critics.
According to Wikipedia:
The National Association of Manufacturers, the National Retail Federation, the Society for Human Resource Management, the United States Chamber of Commerce, and other members of the Genetic Information Nondiscrimination in Employment Coalition (GINE) says the proposed legislation is overly broad.
They are concerned the bills would do little to fix inconsistent state laws and hence might increase frivolous litigation and/or punitive damages as a result of ambiguous record-keeping and other technical requirements.
Also, they are concerned that it would force employers to offer health plan coverage of all treatments for genetically-related conditions.
Insurance industry representatives argued that they might need genetic information. Without it, more high-risk people would buy insurance, causing rate unfairness.
The Definition of Genetic Discrimination
Genetic discrimination takes place when people are treated differently by an insurance company or their employer because they have a gene mutation that may increase the risk of an inherited disorder.
GINA does not apply when an employer has less than 15 employees.
It also does not prevent discrimination against obtaining policies for other forms of insurance, such as life, disability, or long-term care. Some states do have provisions that include nondiscrimination for these types of coverage.
Here are a couple of examples of genetic discrimination.
An early landmark genetic discrimination case involved the Burlington Northern Railroad. Gary Avary hammered railroad ties for the company for several years, but eventually developed arm and hand he thought was carpal tunnel syndrome.
He filed a workers' comp claim and went to a doctor for an exam.
At that exam, he was genetically tested without his consent. It was determined he had a genetic marker linked to a rare medical condition, including a symptom that resembles carpal tunnel syndrome.
Burlington was accused of trying to use the genetic test to prove the worker had a pre-existing condition as then use it as a reason to deny the workers' compensation claim. Using GINA as a basis, the court ultimately ruled in Avary’s favor.
Another notable case involved collecting DNA from employees to resolve a case of misconduct. A grocery warehouse company realized that an employee was habitually defecating in one of its warehouses.
The company requested employees to submit DNA to match the fecal matter to the employee.
The employees sued under GINA provisions and eventually awarded two plaintiffs in the case $2.2 million in damages.
How to Prevent Genetic Discrimination
The key to preventing genetic discrimination in hiring, workplace, and insurance decisions are to become better educated about GINA provisions. As an employer and employee, especially if you have genetic concerns, it's imperative to know what your rights are protections are.
You can also prevent genetic discrimination by guarding access to your existing genetic information. Employers can receive genetic data in some situations, but they are also required to safeguard confidentiality as well.
GINA does have some exceptions and exemptions, but overall these instances are narrow and well defined in most cases.
Employers need to know what these exceptions are, and when in doubt, seek legal counsel to help them understand the fine print of the law.
How to Report a GINA Violation
A person who believes that an employer has violated the provisions of GINA can file a charge with the EEOC within 180 days of the alleged violation. The charge can be filed within 300 days if a state or local agency enforces a law that prohibits employment discrimination based on the acquisition or use of genetic information.
The EEOC will notify the employer of the charge and attempt to resolve it through mediation.
If mediation fails, and the allegation is not solved voluntarily, the EEOC will investigate the charge and notify the person of his or her right to file a lawsuit or file a lawsuit on the person's behalf.
For health insurance genetic discrimination claims, start with your state insurance commissioner's office. GINA requires, at a minimum, that state health insurance matches the minimum provisions of GINA and that states enforce the law themselves.
If the state does not comply in providing GINA protections, the federal government will step in and enforce the protections, including leveling fines against the health insurer.
For More Information on GINA
The National Human Genome Research Institute has several resources on genetic discrimination and current laws that address this issue. Access the information through these sources:
NHGRI Genome Statute and Legislation Database
Genetic Information Nondiscrimination Act (GINA) of 2008
Visit the Genome Statute and Legislation Database to search for relevant state laws related to genetic discrimination.
Also, the Genetic Alliance has links to resources and policy statements on genetic discrimination.
The Smithsonian National Museum of Natural History's exhibit 'Genome: Unlocking Life's Code' discusses GINA's implementation.
Detailed information about GINA is also available from:
Coalition for Genetic Fairness
Questions and Answers for Small Businesses: EEOC Final Rule on Title II of the Genetic Information Nondiscrimination Act of 2008
Equal Employment Opportunity Commission (EEOC) GINA Fact Sheet
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Facts About the Genetic Information Nondiscrimination Act.
U.S. Equal Employment Opportunity Commission. Retrieved Online, November 2019.
- Genetic Information Nondiscrimination Act (GINA).
Department of Budget and Management Health Benefits. maryland.gov. Retrieved Online, November 2019.
- Who Should Control Your Genetic Information — You or Corporate Laboratories?
Sandra Park. American Civil Liberties Union. MAY 19, 2016.
- How State and Federal Laws Are Addressing the Use of Direct-to-Consumer Genetic Testing by Insurance Companies.
Carlton Fields. DECEMBER 18, 2018.
- Facts About the Genetic Information Nondiscrimination Act.
U.S. Equal Employment Opportunity Commission. Retrieved online, November 2019.