In May 2008, the Genetic Information Nondiscrimination Act (GINA) became law. GINA has two parts. Title I applies to group health plans sponsored by private employers, unions, state and local government employers, issuers in the group and individual health insurance markets, and issuers of Medicare supplemental insurance (Medigap). Title II applies to the same covered entities as Title VII of the Civil Rights Act of 1964, and prohibits use of genetic information in employment, restricts the acquisition of genetic information and strictly limits the disclosure of genetic information.
The US Equal Employment Opportunity Commission (EEOC) is empowered to issue regulations under Title II of GINA, and to enforce that title's provisions. Title II of GINA, like Title VII of the Civil Rights Act, applies to employers with 15 or more employees.
The remedies for violations of GINA are those available under Title VII. GINA does not supersede state or local laws that may provide greater protection. GINA provides discrimination protection in addition to other rights and remedies that may exist under federal law, such as under the Americans with Disabilities Act.
In addition to the protections provided against discrimination based on genetic information under state law, GINA prohibits all forms of disparate treatment in employment discrimination against applicants, employees, and former employees based on genetic information. GINA does not create a claim for disparate impact discrimination. GINA prohibits limiting, classifying or segregating an employee based on genetic information, including prohibiting an employee from accepting or working in a position that might exacerbate a condition for which the employee has a genetic predisposition. GINA also prohibits retaliation.
Effective January 10, 2011, the EEOC issued regulations under GINA. The following summary of highlights points of particular importance for employers in GINA and the regulations.
GINA prohibits employers from acquiring genetic information about applicants or employees. GINA excludes unintentional acquisition of information from actions considered to constitute a statutory violation and creates narrow exceptions to the rule forbidding an employer's acquisition of genetic information. Even if genetic information is lawfully obtained under one of the exceptions, it may not be used for discriminatory purposes and must be kept confidential. This means genetic information should not be stored in personnel files. The following is a review of the genetic information exceptions under GINA:
- Inadvertent Request of Information
The inadvertent request or requirement of family medical history of the employee or employee's family member(s) is not considered a statutory violation. EEOC Regulations indicated that inadvertency can be established by using the following "safe harbor" language in requests for medical information:
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.
Failing to use the "safe harbor" language does not create, per se, an intentional acquisition of genetic information (a statutory violation). The employer's receipt of genetic information can still be found to be inadvertent, if the request for medical information is found not "likely to result in a covered entity [the employer] obtaining genetic information."
- Information Collected for Leave Request
Employers may collect information provided to an employer in connection with certification requirements for a leave request, under the federal Family and Medical Leave Act (FMLA) or state family and medical leave laws or other leave policies (not governed by Federal or State law). When the employer requests information for reasonable accommodations, the request must be no "more than sufficient" to establish the need for an accommodation. To be lawful, the documentation must only relate to the impairment for which accommodation is sought. It is appropriate, therefore, to use the safe harbor language in such an informational request.
- Information Received by Accident
The regulations expand exempt status to information volunteered by employees, overheard, observed over certain types of social media, or otherwise received by accident. This includes information learned in response to "an ordinary expression" of concern for the subject of the conversation. This exception also extends to a causal conversation, between colleagues or a supervisor and a subordinate, where questions, concerning the general well-being of an individual or of a family member—such as parent or child—are likely to naturally occur.
For instance, information received as a result of questions such as: "Will you be okay?" "Did they catch it early?" are permissible. However, the exception does not apply when an employer follows up a casual question with probing questions. Probing questions include: questions that refer to general family medical history or whether an individual has been tested specifically for a certain condition. The rationale behind this distinction is that probing questions are likely result in the acquisition of genetic information.
Unsolicited information through media, such as email or social media to which a supervisor has access, is lawful. However, when an employer acquires genetic information from a social networking site with limited access, the acquisition is only exempt if the employer can show that access is routinely granted to those who apply for access rights.
The EEOC recognizes that basic "water cooler" conversations about a coworker's health or the health of a coworker's family member is a common workplace occurrence. This exception is supposed to preclude those conversations from becoming a basis for litigation.
- Aggregate Information Not Individually Identifiable
Aggregate information that is not individually identifiable is exempt if it is acquired pursuant to a voluntary wellness program that provides genetic testing or counseling. EEOC regulations stipulate that this information must be:
Genetic information gathered in wellness programs may only be disclosed to the employer on an aggregate level.
- Voluntarily provided,
- Accompanied by "prior knowing, voluntary, and written authorization," and
- Made available only to two groups—the individual or family member of the individual submitting the information, and the licensed health care provider.
Employers may offer financial incentives for employees to participate in health assessments that include disclosing GINA protected information, as long as the employer offers the incentive regardless of whether or not an employee answers assessment questions regarding genetic information. Employers may also offer financial incentives to encourage employees who have provided genetic information that indicates an increased risk of acquiring a health condition, to participate in programs that encourage and promote healthy lifestyles.
- Commercially or Publicly Available Information
Information from documents that are commercially and publicly available are exempt with the exception of:
- Medical databases,
- Genetic information acquired through sources with limited access requiring permission to access specific information,
- Information sought for the purpose of obtaining genetic information, or
- Information, which, when accessed, would "likely" lead to obtaining genetic information.
- Legally Required or Authorized Monitoring
GINA does not prohibit the collection of information from genetic monitoring either required by law (such as occupational safety and health laws) or specifically authorized in writing by an individual—with that individual's knowing and voluntary agreement. The individual monitored must be informed of the monitoring results. Any genetic monitoring must be done in compliance with Federal genetic monitoring regulations.
- Law Enforcement or Military Exception
Employers may collect information to help law enforcement and the military with proper genetic identification or obtained as a forensic laboratory.
In addition to employers, GINA forbids the acquisition of genetic information by other entities and provides specific circumstances when an employer may disclose genetic information to others.
GINA's prohibition against obtaining genetic information, including family medical history, applies to medical providers used by employers. Employers must, therefore, instruct health care providers not to collect genetic information in the course of a fitness for duty medical examination.
Genetic information may not be disclosed to others, except:
- To the person to whom the information relates;
- To an occupational health researcher, if the research is conducted under applicable federal regulations;
- In response to a court order that specifically calls for the information (but not in response to discovery requests not governed by a court order);
- To government officials investigating compliance with GINA;
- In connection with a request for leave under federal, state or local law; and
- To officials in connection with a contagious disease or imminent hazard of death or life-threatening illness.
Employers should think about compliance with GINA as a matter of privacy as well as non-discrimination, as this statute is a hybridization of discrimination and privacy concepts. As many human resources professionals and line managers are not familiar with this law and are likely to dismiss it as not applicable (incorrectly assuming that its scope is confined to genetic testing), the first task in compliance is to create awareness of the scope of the definition of genetic information as covering family medical history. Conversations and inquiries about family medical history are common, and these communications must be regarded as a key point of vulnerability for the employer under GINA.
The consequences of non-compliance with GINA are the same remedies as may be available to an applicant, employee or former employee under Title VII of the Civil Rights Act of 1964. These remedies are in addition to any remedies that may also be available under state law.
- Revise EEO policies to include prohibitions against discrimination based on genetic information.
- Post a non-discrimination poster that covers GINA (available from the EEOC).
- Train human resources staff and managers on the requirements of Title II of GINA and any applicable state or local laws. It is particularly important to train employees to not acquire family medical history about another employee.
- Make sure that any post-offer, but pre-employment medical examinations, do not include any inquiries about family medical history. Inform physicians conducting examinations for employers that they must now avoid questions about family medical history.
- Put the "safe harbor" language on FMLA and other medical leave of absence forms.
- Make sure any fitness-for-duty medical examinations or second fund workers; compensation data requests do not seek family medical history. Make sure these and other documents, issued by the employer that might appear to solicit genetic information, include the EEOC disclaimer language.
Employers should not:
- Seek genetic information in connection with any discussion of a reasonable accommodation of a disability.
- Make broad requests for information in connection with requests for leave.
- Produce genetic information in response to a subpoena, unless the subpoena specifically calls for the production of this information.
- Use Internet resources, court records, or publicly available databases to acquire genetic information about applicants or employees or use restricted access social media to acquire genetic information.
- Store family medical history information in personnel files, as genetic information that must be stored in a separate medical file. As a practical matter, this means keeping documents associated with a leave to care for the serious illness of an employee or family member separate from the personnel file.
- Engage in specific detailed conversations surrounding an individual's medical history or aliments.
Employers should be careful to comply with GINA, as its terms may arise in a variety of contexts for the vast majority of employers who do not use genetic testing: wellness program planning, administration and record-keeping, administration of leaves of absence, accommodations of persons with disabilities, and internal investigations.
"Family Members" are dependents of an individual by marriage, birth, adoption, or placement for adoption); or those related to the individual from the first to the fourth degree, or to a dependent of the individual.
"Family Medical History" means information about the manifestation of disease or disorder in family members of the individual.
"Genetic information" is information about:
- An individual's genetic tests;
- Genetic tests of the individual's family members (defined to include first through fourth degree relatives);
- The manifestation of disease or disorder in family members (e.g., family medical history);
- An individual's request for or receipt of genetic services or participation in clinical research that includes genetic services; or
- The genetic information of a fetus or any embryo legally held by an individual or family member using assisted reproductive technology.
Genetic information does not include the sex or age of any individual.
"Genetic service" means genetic tests, genetic counseling, or genetic education offered before or after testing or that is unrelated to the genetic testing.
A "genetic test" is an analysis of human DNA, RNA, chromosomes, proteins, or metabolites that detects genotypes, mutations, or chromosomal changes. For example, the following would be considered a genetic test: (1) evaluations used to determine the presence of genetic abnormalities in a fetus during pregnancy, (2) screening adults to determine the risk of conditions such as Huntington's Disease, hereditary nonpolyposis colon cancer cystic fibrosis or sickle cell anemia, and (3) genetic testing to determine ancestry or paternity. Genetic tests do not include: (1) the analysis of proteins that do not detect genotypes, mutations, or chromosomal changes, or analysis of proteins or metabolites that is directly related to a manifested disease, disorder or pathological condition that could reasonably be detected by a health care professional with appropriate training and expertise in the field of medicine involved; or (2) tests for non-human viruses or bacteria, alcohol or drug testing, or common medical tests such as complete blood counts, cholesterol tests or liver-function tests.
"Manifestation" or "Manifested" means a person has been or could be reasonably diagnosed with the disease, disorder, or pathological condition by a health care professional with appropriate training and expertise. Manifestation does not apply if a person simply tests positive for a genetic trait for a disease (even if the probability of manifestation at some point is 100 percent). This is to avoid having a positive test be classified as a "pre-existing condition" under ERISA.
Thirty-five states and the District of Columbia have enacted laws protecting genetic information in employment. These include:
Arizona (ARIZ. REV. STAT. § 41-1463 (LexisNexis 2011)), Arkansas (ARK CODE ANN. § 11-5-403 (2011)), California (CAL. GOV'T CODE § 12940 (Deering 2011)), Connecticut (CONN. GEN. STAT. § 46A-60 (2011)), Delaware (DEL. CODE ANN. tit. 19, § 711 (LexisNexis 2011)), District of Colombia (D.C. CODE § 2-1402.11 (LexisNexis 2011)), Florida (FLA STAT. § 760.40 (LexisNexis 2011)), Hawaii (HAW. REV. STAT. ANN. § 378-1 (LexisNexis 2011)), Idaho (IDAHO CODE ANN. § 39-8303 (2011)) Illinois (410 ILL COMP. STAT. 513/25 (LexisNexis 2011)), Iowa (IOWA CODE § 729.6 (2011)), Kansas (KAN. STAT. ANN. § 44-1009 (2011)), Louisiana (LA. REV. STAT. ANN. § 23:368 (2011)), Maine (ME. REV. STAT. tit. 5, § 19302 (2011)), Maryland (MD. CODE ANN., STATE GOV'T § 20-606 (LexisNexis 2011)), Massachusetts (MASS. ANN. LAWS ch. § 20-606, §4 (LexisNexis 2001)), Michigan (MICH. COMP. LAWS SERV. § 37.1202 (LexisNexis 2011)), Minnesota (MINN. STAT. ANN. § 181.974 (2010)), Missouri (MO. REV. STAT.§ 375.1306 (2011)), Nebraska (NEB. REV. STAT. ANN. § 48-236 (LexisNexis 2011)), Nevada (NEV. REV. STAT. ANN. § 613.345 (LexisNexis 2011)), New Hampshire (N.H. REV. STAT. ANN. § 141-H:3 (LexisNexis 2011)) New Jersey (N.J. STAT. ANN. § 10:5-12 (2011)), New Mexico (N.M. STAT. ANN. § 24-21-4 (LexisNexis 2011)), New York (N.Y. EXEC. LAW § 296 (Consol. 2011)), North Carolina (N.C. GEN STAT. § 95-28.1A (2011)), Oklahoma (OKLA. STAT. ANN. tit. 36, § 3614.2 (2011)), Oregon (OR. REV. STAT. § 10:5-12 (2009)), Rhode Island (R.I. GEN. LAWS § 28-6.7-1 (2011)), South Dakota (S.D. CODIFIED LAWS § 60-2-20 (2011)), Texas (TEX. LAB. CODE § 21.402 (2010)), Utah (UTAH CODE ANN. § 26-45-103 (LexisNexis 2011)), Vermont (VT. STAT. ANN. tit. 18, § 9333 (2011)), Virginia (VA. CODE ANN. § 40.1-28.7:1 (2011)), Washington (WASH. REV. CODE ANN. § § 49.44.180 (LexisNexis 2011)), and Wisconsin (WIS. STAT. § 111.372 (2011)).
The EEOC has recently issued a proposal to extend the record keeping requirements under Title VII of the Civil Right Act and the Americans with Disabilities Act to employers covered by the provisions of Title II of GINA. Comments on the proposed rules are due on or before August 1, 2011.
|The information in this QuickCounsel should not be construed as legal advice or legal opinion on specific facts and should not be considered representative of the views of its authors, its sponsors, and/or the ACC. This QuickCounsel is not intended as a definitive statement on the subject addressed. Rather, it is intended to serve as a tool providing practical advice and references for the busy in-house practitioner and other readers.
Published June 15, 2009 (Updated on September 19, 2011)