The Genetic Information Nondiscrimination Act of 2008 (GINA)1 has flown under many people’s radar. The low profile may be, in part, because GINA’s effective date was delayed by eighteen months, to allow the U.S. Equal Employment Opportunity Commission (EEOC) to develop regulations. So, flurries of interest surrounding GINA’s May 1, 2008 signing date may have dissipated by its November 1, 2009 effective date. The EEOC did develop proposed regulations, which have undergone the public comment period but are not yet codified in the Code of Federal Regulations.2 The fact that GINA is still working its way through the courts also may contribute to its low profile. On-line research revealed two federal cases in the country that mentioned GINA. One court cited it in a footnote in a list of protected classes, but the case did not include a GINA claim.3 The other case did include a GINA claim, but the court dismissed it, without substantive analysis of the statute.4 In case you are among the many who have not yet been introduced to GINA, this article gives a brief overview of GINA’s intent, key aspects of the definitional framework, and the practices it proscribes.
GINA’s Genesis
Section 2 of GINA lays out the congressional findings underpinning the legislation. Among Congress’s concerns were that advances in genetics “give rise to the potential misuse of genetic information to discriminate in health insurance and employment.” Congress cited historical examples of state sterilization laws designed to “correct” perceived “defects” in the population relating to genetic conditions, the use of genetic conditions as a proxy for race to effect discrimination (i.e. screening for sickle-cell anemia with the knowledge that it disproportionally impacts African-Americans), and pre-employment genetic screening. Hence, Congress found that it “clearly has a compelling public interest in relieving the fear of discrimination and in prohibiting its actual practice in employment and health insurance.” Finding the patchwork of current state and federal law inadequate, Congress declared that “Federal legislation establishing a national and uniform basic standard is necessary to fully protect the public from discrimination and allay their concerns about the potential for discrimination,” with the aim of encouraging “individuals to take advantage of genetic testing, technologies, research, and new therapies.”
With these goals in mind, Title I of GINA addresses health insurance. Title II is directed to employers, employment agencies, and labor organizations. Title II generally proscribes the use, acquisition, and improper maintenance or disclosure of “genetic information.”
“Genetic Information” And Other Definitions Specific to GINA
GINA introduced the concept of “genetic information” into the world of employee anti-discrimination protection. There are three primary types of genetic information with respect to any individual, and a fourth secondary type. The primary types, which provide more direct evidence of the individual’s genetics, are: (1) the individual’s genetic tests; (2) the genetic tests of family members5 of the individual; and, (3) “the manifestation of a disease or disorder in family members of such individual.”6 The more secondary type is “any request for, or receipt of, genetic services,7 or participation in clinical research which includes genetic services” by the individual or a family member.8 This last type does not provide direct information about the individual’s actual or potential genetics, but Congress determined that it was a significant enough indicator of genetic condition to warrant protection.
GINA expressly provides that information about one’s sex or age is not “genetic information.”9 GINA also attempts to distinguish between one’s medical information and protected genetic information. An employer “shall not be considered to be in violation of” GINA “based on the use, acquisition, or disclosure of medical information . . . including [medical information about] a manifested disease, disorder, or pathological condition that has or may have a genetic basis”; provided, of course, that such medical information does not otherwise meet the technical definition of “genetic information.”10 This circuitous definition seems intended to recognize that employers regularly acquire and maintain medical information about employees, but to assure employers that of the vast body of medical information that an employer may have (even including medical information that relates to a genetic condition), if that information does not actually meet the definition of “genetic information,” GINA will not apply.
Integral to understanding “genetic information” is another new concept – the “genetic test.” Here, the definition is rather technical. A “genetic test” is an “analysis of human DNA, RNA, chromosomes, proteins, or metabolites, that detects genotypes, mutations, or chromosomal changes.”11 As is often the case with technical definitions, clarification lies in what the definition does not include. For example, not every “analysis of proteins or metabolites” is a genetic test. Such a test will not be a genetic test provided that it “does not detect genotypes, mutations, or chromosomal changes.”12 Therefore, while all analyses of human DNA, RNA, and chromosomes are genetic tests, not all analyses of proteins and metabolites qualify. Furthermore, the EEOC provided, by way of example, that a test for “the presence of alcohol or drugs in the blood is not a genetic test.”13 In contrast, if the test were to “determine whether an individual has a genetic predisposition for alcoholism or drug use,” then it is a genetic test.14 One may draw solace from the technical nature of the definition because only tests that meet this scientific threshold will constitute genetic tests under GINA.
Also vital to GINA’s framework is that the definition extends to the employee’s family members’ genetic tests. The proposed regulations clarify who is included in each degree of relation, noting that GINA’s explicit extension to the fourth degree of relation captures great-great-grandparents, great-great-grandchildren, and the children of first cousins (first cousins once-removed).15 Also notable is that inasmuch as the “manifestation of a disease or disorder” constitutes genetic information, it is limited to the family of an individual – the definition does not, on its face, include the individual’s manifestation of a disease or disorder. However, an individual’s own condition can generate protected genetic information, of the secondary nature described above, in the form of the employee’s “request for, or receipt of, genetic services.”
Also key to understanding GINA’s reach are the definitions of covered employers and protected employees. By its terms, GINA is intended to apply to all employers with more than 15 employees, including state governments.16 The proposed regulations clarify which employees are covered. The proposed regulations also highlight the fact that GINA expressly includes in the definition of “employee” any applicant for employment. They further note that, even though GINA does not expressly purport to apply to former employees, the term “employee” as used in Title VII – which GINA tracks closely – has been understood to include former employees, and GINA should be read to do so, as well.17 Thus, the EEOC appears prepared to apply GINA to prospective, current, and former employees.
Employment Practices Prohibited by GINA
Title II of GINA prohibits discrimination based upon genetic information. GINA also prohibits both the acquisition and disclosure of genetic information – an apparent paradox clarified below. In addition, GINA prohibits an employer from retaliating against an employee because the employee exercised his rights under the substantive provisions of GINA.
Textually, GINA tracks the prohibition against discrimination contained in Title VII relating to race, color, religion, sex, or national origin.18 Hence, GINA prohibits discrimination in the “terms, conditions, or privileges of employment . . . because of genetic information.”19 Nor may a covered employer “limit, segregate, or classify the employees of the employer in any way that would deprive or tend to deprive any employee of employment opportunities or otherwise adversely affect the status of the employee as an employee, because of genetic information.”20 The EEOC reads this as banning intentional discrimination as well as harassment in the form of a hostile work environment created by either supervisors or co-workers. However, GINA parts with Title VII by expressly providing that “disparate impact . . . on the basis of genetic information does not establish a cause of action under” GINA.21
Again tracking Title VII, GINA bans retaliation against an employee either because “such individual opposed any act or practice may unlawful” by GINA (commonly referred to as opposition clause activity), or because “such individual made a charge, testified, assisted, or participated in any manner in an investigation, proceeding, or hearing” (commonly referred to as participation clause activity).22 The remedies generally available to one who suffered discrimination under GINA are also available to those retaliated against under GINA.
Peculiar to GINA are the protections of genetic information, in and of itself. In the first instance, subject to specific exceptions, a covered employer may not “request, require, or purchase genetic information with respect to an employee or a family member of the employee.”23 The EEOC recognizes this to relate only to the “deliberate” acquisition of genetic information.24 With this gloss, and incorporating the definitions above, the prohibition can be read to prohibit only the deliberate “request, require[ment] or purchase” of genetic tests of the employee or employee’s family member, of information regarding the manifestation of a genetic disease or disorder in a family member, or of an employee’s actual or attempted use of genetic services.
Recognizing that genetic information, as defined in GINA, may creep into the employment context in many ways that would not constitute the employer’s deliberate acquisition of the information, Congress described six exceptions to the prohibition. One is an employer’s inadvertent request for individual or family medical history.25 In a similar vein, GINA does not prohibit requesting certain information required to obtain certification under the Family and Medical Leave Act (FMLA), or learning about genetic information through generally available materials (like newspapers and magazines) that may include family medical history.26 These, too, seem to lack the deliberateness that GINA requires. The proposed regulations include other scenarios of inadvertent acquisition that are not within the statute, such as “overhearing a conversation,” “receiving it from the individual or third-parties without having solicited or sought the information,” or when the employer learns about genetic information “in response to a general inquiry about the individual’s general health, an inquiry about whether the individual has any current disease, disorder, or pathological condition, or an inquiry about the general health of an individual’s family member.”27 Another exception, which on its face appears deliberate, is when “health or genetic services are offered by the employer, including such services offered as part of a wellness program,” but this exception includes several limiting conditions.28 GINA warns that even in instances where employers are permitted to acquire genetic information, employers may not use legally obtained genetic information to discriminate against the employee, and must keep it confidential in the manner GINA prescribes.
Because the prohibition against acquisition relates to deliberate acquisition and is not without exception, and because employers may have acquired what GINA now classifies as genetic information before the effective date of the law, GINA also demands confidentiality of the genetic information in the employer’s custody. The primary vehicle to secure that confidentiality is one with which many employers already are familiar: “[S]uch information shall be maintained on separate forms and in separate medical files and be treated as a confidential medical record of the employee.”29 Textually, this provision tracks the Americans with Disabilities Act (ADA). In fact, GINA states that an employer “shall be considered to be in compliance with the maintenance of information requirements of [GINA] with respect to genetic information subject to this subsection that is maintained with and treated as a confidential medical record under” the record-keeping requirement of the ADA.30
Once again, this general prohibition has specific exceptions laid out in the statute. For example, with regard to regulations implementing the Health Insurance Portability and Accountability Act (HIPAA), GINA “does not prohibit a covered entity under [HIPAA] regulations from any use or disclosure of health information that is authorized for the covered entity under such regulations.”31 Also, an employer may disclose genetic information to the employee so long as the employee makes a written request.32 An employer may disclose information to a court only in response to a court order, and even then may disclose “only the genetic information expressly authorized by such order,” and if the employee was not aware of the court order, then the employer must inform the employee of the court order and of the genetic information produced.33
Private Right of Action
An employee aggrieved by a violation of GINA has the same right to file a charge with the Equal Employment Opportunity Commission, and to proceed to litigation, as an employee proceeding under the enforcement provisions of Title VII.34 Similarly, the employee may seek reimbursement of reasonable attorney fees, and is also limited in available damages, as though he were proceeding under Title VII.35
James A. Hogan
Assistant Section Chief
1 42 U.S.C. §§ 2000ff, et seq. (codifying Pub. L. No. 110-233, 122 Stat. 881 (2008)).
2 The proposed regulations, as well as EEOC’s rationale, are in the Federal Register and available through the EEOC’s website. See Regulations Under The Genetic Information Nondiscrimination Act Of 2008, 74 Fed. Reg. 9,056-71 (Mar. 2, 2009) (to be codified as 29 C.F.R. Part 1635); http://www.regulations.gov/search/Regs/home.html#docketDetail?R=EEOC-2009-0008.
3 See Blevins v. Suarez, 2008 U.S. Dist. LEXIS 80339, at *12 n.2 (W.D. Va. Oct. 10, 2008).
4 See Benoit v. Pa. Bd. of Prob. & Parole, 2010 U.S. Dist. LEXIS 10979, at *6 (E.D. Pa. Feb. 9, 2010).
5 “Family members” include “a first-degree, second-degree, third-degree, or fourth-degree relative” of the individual or any 5dependent of the individual. 42 U.S.C. § 2000ff(3).
6 42 U.S.C. § 200ff(4)(A). Though not included in the definition, per se, GINA later provides that genetic information about an individual or family member can include genetic information of an embryo or fetus of the individual or family member. See 42 U.S.C. § 2000ff-8(b).
7 “Genetic services” can be “a genetic test,” “genetic counseling,” or “genetic education.” 42 U.S.C. § 2000ff(6).
8 42 U.S.C. § 2000ff(4)(B).
9 See 42 U.S.C. § 2000ff(4)(C).
10 42 U.S.C. § 2000ff-9.
11 42 U.S.C. § 2000ff(7)(A).
12 42 U.S.C. § 2000ff(7)(B).
13 Proposed 29 C.F.R. § 1635.3(h)(2)(i), 74 Fed. Reg. 9,068 (Mar. 2, 2009) (emphasis added).
14 Proposed 29 C.F.R. § 1635.3(h)(2)(ii), 74 Fed. Reg. 9,068 (Mar. 2, 2009) (emphasis added).
15 See Proposed Regulation 1635.3(a)(2), 74 Fed. Reg. 9,067 (Mar. 2, 2009).
16 See 42 U.S.C. § 2000ff(2)(A)-(B).
17 See Proposed 29 C.F.R. § 1635.2(c); Section-by-Section Analysis of the Regulation, 74 Fed. Reg. 9,058 (Mar. 2, 2009).
18 Compare 42 U.S.C. § 2000e-2(a) (Title VII); 42 U.S.C. § 2000ff-1(a) (GINA).
19 42 U.S.C. § 2000ff-1(a)(1).
20 42 U.S.C. § 2000ff-1(a)(2).
21 42 U.S.C. § 2000ff-7(a).
22 42 U.S.C. § 2000ff-6(f).
23 42 U.S.C. § 2000ff-1(b).
24 See Section-by-Section Analysis of the Regulation, 74 Fed. Reg. 9,058 (Mar. 2, 2009).
25 42 U.S.C. § 2000ff(b)(1).
26 42 U.S.C. § 2000ff(b)(3)-(4) (cross-referencing 29 U.S.C. § 2613).
27 Proposed Regulation 1635.8(b)(1), 74 Fed. Reg. 9,068 (Mar. 2, 2009).
28 42 U.S.C. § 2000ff(b)(2).
29 42 U.S.C. § 2000ff-5(a).
30 42 U.S.C. § 2000ff-5(a) (emphasis added) (cross-referencing 42 U.S.C. § 12112 (d)(3)(B)).
31 42 U.S.C. § 2000ff-5(c).
32 42 U.S.C. § 2000ff-5(b)(1).
33 42 U.S.C. § 2000ff-5(b)(3).
34 See 42 U.S.C. § 2000ff-6(a)(1) (cross-referencing 42 U.S.C. § 2000e-5).
35 See 42 U.S.C. § 2000ff-6(a)(2)-(3) (cross-referencing 42 U.S.C. §§ 1981a, 1988).