Title II of the Genetic Information Nondiscrimination Act of 2008 (GINA), which prohibits genetic information discrimination in employment, took effect on November 21, 2009.
Under Title II of GINA, it is illegal to discriminate against employees or applicants because of genetic information. Title II of GINA prohibits the use of genetic information in making employment decisions, restricts acquisition of genetic information by employers and other entities covered by Title II, and strictly limits the disclosure of genetic information.
The EEOC enforces Title II of GINA (dealing with genetic discrimination in employment). The Departments of Labor, Health and Human Services and the Treasury have responsibility for issuing regulations for Title I of GINA, which addresses the use of genetic information in health insurance.
Genetic information includes information about an individual's genetic tests and the genetic tests of an individual's family members, as well as information about any disease, disorder, or condition of an individual's family members (i.e. an individual's family medical history). Family medical history is included in the definition of genetic information because it is often used to determine whether someone has an increased risk of getting a disease, disorder, or condition in the future.
The law forbids discrimination on the basis of genetic information when it comes to any aspect of employment, including hiring, firing, pay, job assignments, promotions, layoffs, training, fringe benefits, or any other term or condition of employment. An employer may never use genetic information to make an employment decision because genetic information doesn't tell the employer anything about someone's current ability to work.
Under GINA, it is also illegal to harass a person because of his or her genetic information. Harassment can include, for example, making offensive or derogatory remarks about an applicant or employee's genetic information, or about the genetic information of a relative of the applicant or employee. Although the law doesn't prohibit simple teasing, offhand comments, or isolated incidents that are not very serious, harassment is illegal when it is so severe or pervasive that it creates a hostile or offensive work environment or when it results in an adverse employment decision (such as the victim being fired or demoted). The harasser can be the victim's supervisor, a supervisor in another area, a co-worker, or someone who is not an employee, such as a client or customer.
Under GINA, it is illegal to fire, demote, harass, or otherwise "retaliate" against an applicant or employee for filing a charge of discrimination, participating in a discrimination proceeding (such as a discrimination investigation or lawsuit), or otherwise opposing discrimination.
It will usually be unlawful for an employer to get genetic information. There are six narrow exceptions to this prohibition:
It is also unlawful for an employer to disclose genetic information about applicants or employees. Employers must keep genetic information confidential and in a separate medical file. (Genetic information may be kept in the same file as other medical information in compliance with the Americans with Disabilities Act.) There are limited exceptions to this non-disclosure rule. Source: www.eeoc.gov
The EEOC has issued the following "Questions and Answers" for Employers regarding the EEOC's Final Rule on GINA:
Title II applies to private employers with 15 or more employees, employment agencies, labor unions, and joint labor-management training programs, among other entities. Laws in 34 states also prohibit employment discrimination on the basis of genetic information, but are not discussed here. Some of these laws may apply to employers with fewer than 15 employees.
Yes. Title II of GINA was effective on November 21, 2009.
The statute and the final rule say that "genetic information" includes:
Information about an individual's genetic tests;
Information about the genetic tests of a family member;
Family medical history;
Requests for, and receipt of, genetic services by an individual or a family member; and
Genetic information about a fetus carried by an individual or family member, or about an embryo legally held by the individual or family member using assisted reproductive technology.
Tests used to determine whether an individual has a certain genetic variant associated with an increased risk of acquiring a disease in the future are genetic tests. For example, a test to determine whether an individual has the genetic variants associated with a predisposition to certain types of breast cancer is a genetic test. Other examples of genetic tests include a test for a genetic variant for Huntington's Disease and carrier screenings of adults using genetic analysis to determine the risk of conditions such as cystic fibrosis, sickle cell anemia, spinal muscular atrophy, or fragile X syndrome in future offspring.
Examples of tests that are not genetic tests include an HIV test, a cholesterol test, and a test for the presence of drugs or alcohol.
No. GINA is concerned primarily with protecting those individuals who may be discriminated against because an employer thinks they are at increased risk of acquiring a condition in the future. Someone who is discriminated against because she actually has breast cancer or another condition would not be protected by GINA, even if the condition has a genetic basis. The ADA, however, may protect such an individual whose cancer or other condition meets the definition of "disability." Recent amendments to the ADA make it much easier for individuals with cancer and other kinds of impairments to establish that they have disabilities, and thus are entitled to the law's protection.
No. An employer may never use genetic information in making employment decisions, since the possibility that someone may develop a disease or disorder in the future has nothing to do with his or her current ability to perform a job.
Yes. GINA includes language similar to that used in Title VII of the Civil Rights Act of 1964 and other equal employment opportunity statutes, prohibiting a wide range of discrimination, including harassment. GINA also includes a specific provision prohibiting employers from retaliating against employees who oppose employment practices made unlawful by GINA (e.g., by refusing to provide genetic information) or who participate in an investigation, proceeding, or hearing under GINA (e.g., by filing a charge or by assisting others in filing a charge with the EEOC).
No. Health benefits are part of the compensation, terms, conditions, and privileges of employment. For example, an employer that fires an employee because of anticipated high health claims based on genetic information would violate Title II of GINA.
NOTE: AS INDICATED BELOW, THERE ARE RESTRICTIONS ON ACQUISITION OF GENETIC INFORMATION
Title II of GINA generally prohibits employers from requesting, requiring, or purchasing, an applicant's or employee's genetic information, even if it is never used. In addition to asking an applicant or employee directly about genetic information, the EEOC's final rule says that a "request" for genetic information may include actions such as conducting an Internet search on an individual in a way that is likely to result in a covered entity obtaining genetic information; actively listening to third-party conversations or searching an individual's personal effects for the purpose of obtaining genetic information; and making requests for information about an individual's current health status in a way that is likely to result in a covered entity obtaining genetic information.
No. Although an employer may conduct medical examinations after making a job offer or during employment as permitted by the Americans with Disabilities Act (ADA), the examination may not include collection of family medical history. An employer must tell its health care providers not to collect genetic information as part of an employment-related medical exam, and, if it finds out that family medical histories are being collected, the employer must take measures within its control (including not using the services of that health care provider) to prevent this from happening in the future.
Yes, there are six narrow exceptions to the rule that an employer may not request, require, or purchase genetic information about an applicant or employee:
The EEOC's final rule discusses several situations in which the acquisition of genetic information may be inadvertent. For example, it would not violate GINA for a supervisor to overhear one employee tell another that her mother has breast cancer, or that the employee herself has had a test to determine whether she has the gene associated with increased risk for breast cancer. Similarly, this exception will apply when a supervisor receives genetic information in response to a question about an employee's general well-being ("How are you?" or "Did they catch it early?" asked of an employee who was just diagnosed with cancer), or a question about the general health of a family member ("How's your son feeling today" "Did they catch it early?" asked of an employee whose family member was just diagnosed with cancer, or "Will your daughter be OK?"). Another example of inadvertent acquisition is when a supervisor receives an unsolicited communication about an employee's family member (e.g., an email indicating that an employee's mother has cancer). An employer that lawfully requests documentation about an employee's current medical condition may also inadvertently receive genetic information, particularly family medical history (see Questions 17-19).
GINA and the final rule say that an employer may acquire genetic information about an employee or his or her family members when it offers health or genetic services, including wellness programs, on a voluntary basis. The individual receiving the services must give prior, voluntary, knowing, and written authorization.
While individualized genetic information may be provided to the individual receiving the services and to his or her health or genetic service providers, genetic information may only be provided to the employer in aggregate form. However, if information provided in the aggregate makes identification of specific individuals' genetic information possible because of the small number of participants in a wellness program, the employer will not violate GINA.
The proposed rule sought comments on the extent to which an employer could offer financial inducements to encourage participation in health or genetic services, particularly wellness programs. The final rule says that while employers may offer certain kinds of financial inducements to encourage participation in health or genetic services under certain circumstances, they may not offer an inducement for individuals to provide genetic information. Thus, it would not violate Title II of GINA for an employer to offer individuals an inducement for completing a health risk assessment that includes some questions about family medical history or other genetic information, as long as the employer specifically identifies those questions and makes clear, in language reasonably likely to be understood by those completing the health risk assessment, that the individual need not answer the questions that request genetic information to receive the inducement.
Title II allows employers to offer financial inducements for participation in disease management programs or other programs that encourage healthy lifestyles, such as programs that provide coaching to employees attempting to meet particular health goals (e.g., achieving a certain weight, cholesterol level, or blood pressure). To avoid a violation of Title II of GINA, however, employers who offer such programs and inducements to individuals based on their voluntarily provided genetic information must also offer the programs and inducements to individuals with current health conditions, and/or to individuals whose lifestyle choices put them at risk of acquiring a condition.
Proof that an employee is entitled to leave to care for a family member with a medical condition under the FMLA, similar state or local laws, or employer policies may require an employee to provide family medical history (i.e. information about the manifestation of a disease or disorder in the family member) to the employer. Without the exception, requiring family medical history under these circumstances would violate GINA.
An employer is not liable under GINA for acquiring genetic information from sources that are commercially and publicly available, such as newspapers, books, magazines, periodicals, television shows, movies, or the Internet. For example, an employer would not be liable if it accidentally came across a newspaper article saying that an employee's father died of a sudden heart attack.
However, this exception does not apply to :
Yes, if certain requirements are met. An employer that wants to do genetic monitoring that is not required by law must provide written notice of the monitoring program and must obtain an individual's prior, knowing, written, and voluntary authorization. If the monitoring is required by law, such as under standards issued by the Occupational Safety and Health Administration (OSHA), an employer must provide notice of the monitoring and otherwise comply with the requirements for conducting the monitoring program, but need not obtain the individual's prior, knowing, written, and voluntary consent.
Furthermore, while individualized genetic information may be disclosed to the employee, and to the doctors and certified genetic counselors involved in the monitoring, the employer may only be given genetic information in aggregate form. As in the case of health or genetic services offered by an employer on a voluntary basis, if information provided in the aggregate makes identification of specific individuals' genetic information possible because of the small number of participants in a monitoring program, the employer will not violate GINA.
The final rule clarifies that GINA prohibits an employer from retaliating or otherwise discriminating against an employee who refuses to participate in genetic monitoring that is not specifically required by law. An individual who refuses to participate in a voluntary genetic monitoring program should be informed of the potential dangers (e.g., the consequences that might result if the effects of certain toxins in the workplace are not identified), but the employer may not take any adverse action against the individual for refusing to participate. However, an employer does not violate Title II of GINA if it limits or restricts an employee's job duties based on genetic information because it was required to do so by law or regulation, such as regulations administered by OSHA.
GINA permits employers that engage in DNA testing for law enforcement purposes as a forensic laboratory, or for purposes of human remains identification, to collect their employees' genetic information in certain limited circumstances. Specifically, these entities may request or require genetic information only to the extent that the information is used for analysis of DNA identification markers for quality control to detect sample contamination.
Although the proposed rule said that the acquisition of genetic information as the result of an inquiry about an individual's current health status would be considered inadvertent if the request was lawful, the final rule says that when an employer makes a request for health-related information (e.g., to support an employee's request for reasonable accommodation under the ADA or a request for sick leave), it should warn the employee and/or health care provider from whom it requested the information not to provide genetic information. The warning may be in writing or oral (if the employer typically does not make such requests in writing).
The final rule suggests language such as the following:
The Genetic Information Nondiscrimination Act of 2008 (GINA) prohibits employers and other entities covered by GINA Title II from requesting or requiring genetic information of an individual or family member of the individual, except as specifically allowed by this law. To comply with this law, we are asking that you not provide any genetic information when responding to this request for medical information. "Genetic information," as defined by GINA, includes an individual's family medical history, the results of an individual's or family member's genetic tests, the fact that an individual or an individual's family member sought or received genetic services, and genetic information of a fetus carried by an individual or an individual's family member or an embryo lawfully held by an individual or family member receiving assistive reproductive services.
If this type of warning is provided, any resulting acquisition of genetic information will be considered inadvertent, and therefore not in violation of GINA. In other words, use of this type of warning creates a "safe harbor" for employers who receive genetic information in response to a request for health-related information.
To take advantage of this safe harbor, the employer must do what is reasonably necessary to ensure that the warning is understood by employees or doctors submitting health-related information to the employer, at the time of submission. This is best accomplished by providing the warning each time health-related information is requested. But it may suffice to give the warning more generally, for example by including it on the employer's leave and reasonable accommodations request forms, if doing so would reasonably ensure that it is understood at the time health-related information is submitted.
If the employer's request for health-related information was made in a way that was likely to result in the employer obtaining genetic information , the request violates GINA.
On the other hand, if the employer's request was not made in a way that was likely to result in the acquisition of genetic information, any genetic information it acquires would be considered an inadvertent acquisition (see Question 11). For example, an employer who asks an employee to provide a doctor's note explaining a five-day absence will not violate GINA if the doctor includes the family medical history taken as part of the employee's medical examination, even if the employer has not warned the employee or the doctor against providing genetic information.
An employer in possession of genetic information about applicants or employees must treat it the same way it treats medical information generally. It must keep the information confidential and, if the information is in writing, must keep it apart from other personnel information in separate medical files. Genetic information may be kept in the same file as medical information subject to the ADA.
There are limited circumstances under which an employer may disclose genetic information:
Genetic information placed in personnel files prior to GINA's effective date of November 21, 2009 need not be removed, and an employer will not be liable under GINA for the mere existence of that genetic information in a personnel file. However, disclosing that genetic information to a third party is prohibited.
State or local laws that provide equal or greater protections from employment discrimination on the basis of genetic information still apply. Additionally, Title II of GINA does not limit the rights or protections under federal, state, local or tribal laws that provide greater privacy protection to genetic information, and does not affect an individual's rights under the ADA, the Rehabilitation Act, or state or local disability discrimination laws.
Someone who believes that his or her employment rights have been violated on the basis of genetic information may file a "charge of discrimination" with the EEOC within 180 days from the date of the alleged violation, or within 300 days if a state or local agency enforces a law that prohibits employment discrimination on the basis of use or acquisition of genetic information or genetic testing.
If a charge is filed, the EEOC will notify the employer and provide the name and contact information of an investigator. The parties may choose to resolve the dispute through settlement, or in some cases mediation. If the dispute is not resolved voluntarily, the investigator will ask both parties for information. The employer may be asked to:
Once the investigation is complete, the EEOC will determine whether there is "reasonable cause" to believe discrimination occurred. If there is insufficient evidence to find reasonable cause, the EEOC will issue a Dismissal and Notice of Rights stating that the charging party has a right to file a lawsuit in federal court within 90 days of receipt of the notice.
If reasonable cause is found, the EEOC will issue a Letter of Determination and try to conciliate the charge. Where the charge cannot be resolved through conciliation, the EEOC will either file a court action, or issue a Notice of Right to Sue, stating that the charging party has a right to file a lawsuit in federal court within 90 days of receipt of the notice. A charging party may also request a Notice of Right to Sue from the EEOC 180 days after the charge was first filed with the EEOC.
For a detailed description of the process, please refer to the EEOC website at http://www.eeoc.gov/employers/process.cfm.
The same remedies available under Title VII of the Civil Rights Act of 1964 are available under Title II of GINA. An aggrieved individual may seek reinstatement, hiring, promotion, back pay, injunctive relief, monetary damages (including compensatory and punitive damages), and attorneys' fees and costs. Title VII's cap on combined compensatory and punitive damages also applies to actions under Title II of GINA. The cap on combined compensatory and punitive damages (excluding past monetary losses) ranges from $50,000 for employers with 15-100 employees, to $300,000 for employers with more than 500 employees.
1 On September 23, 2009, EEOC published a Notice of Proposed Rulemaking (NPRM) to implement the ADA Amendments Act. See 74 FR 48431. More information about the NPRM is available at http://www.eeoc.gov/laws/statutes/adaaa_notice.cfm