February 03, 2016
A. Introduction
The federal Genetic Information Nondiscrimination Act (“GINA”) took effect on November 21, 2009. The law was extraordinarily popular at the time it was enacted; GINA passed the U.S. Senate by a 95-0 vote and passed the House of Representatives by a vote of 414-1.1
As applied to employers, the law (1) prohibits employers from acquiring employees’ genetic information; (2) prohibits employers from discriminating on the basis of any genetic information they do acquire; and (3) requires that employers keep strictly confidential any employee genetic information that they have. Although much remains to be seen about the law and its enforcement, the regulations and early guidance issued by the Equal Employment Opportunity Commission (“EEOC”) indicate that the EEOC intends to take a hard line in enforcing GINA. And employees seem to be well aware of the law – as of July 2010 about 200 charges alleging employment discrimination in violation of GINA had already been filed with the EEOC.
Following is a detailed look at GINA, followed by guidance and tips for employers in complying with the new law and avoiding its pitfalls.
B. Overview of GINA and “Genetic Information”
1. Coverage
GINA adopts the definitions of “employer” and “employee” set forth in Title VII. Thus, GINA applies to all private employers with 15 or more employees, as well as to state and local government employers. The employment-related provisions of GINA are codified at 42 U.S.C. § 2000ff (generally the same section of the United States Code as Title VII).
2. Basic Rules and Requirements Broadly speaking, GINA imposes these rules on employers:
a. Employers are prohibited from intentionally acquiring genetic information about their employees.
b. Employers are prohibited from using genetic information to discriminate in employment.
c. Employers must keep any genetic information that they have acquired confidential.
Before turning to a detailed explanation of these three provisions in Part C below, it is necessary to address some of the definitions contained in GINA.
3. Definitions
Generally speaking, genetic information is any information about an employee’s genetic tests or about the employee’s family member’s genetic tests or health conditions.
Family member is defined extremely broadly, reaching all the way to great-great grandparents and first cousins once removed. Thus, while it may be fairly easy for employers to avoid liability relating to genetic tests, what is likely to be more challenging will be avoiding liability relating to acquiring or using information about an employee’s family members. GINA’s pertinent definitions are set forth in detail below:
a. Genetic Information means, with respect to an individual employee, any information regarding:
i. the individual’s genetic tests;
ii. the genetic tests of the individual’s family members;
iii. the manifestation of a disease or disorder in family members of an individual;
iv. any request for, or receipt of, genetic services, or participation in clinical research which includes genetic services, by the individual or any family member of the individual;
v. genetic information of a fetus carried by a pregnant individual or family member of an individual, as well as genetic information of an embryo legally held by an individual or family member utilizing assisted reproductive technology.
42 U.S.C. § 2000ff-1, -8(b). Genetic information excludes:
i. information about an individual’s or family member’s sex or age;
ii. information about a current disease or disorder affecting the individual (a “manifested condition”) –
this would be covered by the ADA, not GINA. Id. Note that GINA also provides that an employer is not “considered to be” in violation of GINA based on the employer’s use, acquisition, or disclosure of medical information that is not genetic information about a manifested disease, disorder, or pathological condition of an employee, including a disease, disorder or condition that may have a genetic basis. 42 U.S.C. § 2000ff-9.
b. Family Member means:
i. a dependent of the employee (through marriage, birth, or adoption or placement for adoption); or
ii. any other individual who is a first-degree, seconddegree, third-degree, or fourth-degree relative of the employee or of the employee
• first-degree relatives include an individual’s parents, siblings, children, and half-siblings
• second-degree relatives include an individual’s grandparents, grandchildren, uncles, aunts, nieces, and nephews
• third-degree relatives include an individual’s greatgrandparents, great grandchildren, great uncles/aunts, and first cousins
• fourth-degree relatives include an individual’s great-great grandparents, great-great grandchildren, and first cousins once removed
29 C.F.R. § 1635.3.
c. Family Medical History means information about the manifestation of disease or disorder in family members of the individual. 29 C.F.R. § 1635.3.
d. Manifestation means, with respect to a disease, disorder, or pathological condition, that an individual has been or could reasonably be diagnosed with the disease, disorder, or pathological condition by a health care professional with appropriate training and expertise in the field of medicine involved. The disease, disorder, or condition is not “manifested” within the meaning of GINA if the diagnosis is based principally on genetic information or on the results of one or more genetic tests. 29 C.F.R. § 1635.3.
e. Genetic Test means an analysis of human DNA, RNA, chromosomes, proteins, or metabolites, that detects genotypes, mutations, or
chromosomal changes. It excludes any such analysis that does not detect genotypes, mutations, or chromosomal changes. 42 U.S.C. § 2000ff-1. Further, testing for the presence of a virus that is not composed of human DNA, RNA, chromosomes, proteins, or metabolites is not a genetic test. Testing for the presence of drugs or alcohol is not genetic testing, but testing to determine whether a person has a genetic predisposition for alcoholism or drug testing is a genetic test. 29 C.F.R. § 1635.3.
f. Genetic Services means a genetic test; genetic counseling; or genetic education.
g. Genetic monitoring means the periodic examination of employees to evaluate acquired modifications to their genetic
material, such as chromosomal damage or evidence of increased occurrence of mutations, that may have developed in the course of
employment due to exposure to toxic substances in the workplace, in order to identify, evaluate, and respond to the effects of or
control adverse environmental exposures in the workplace. 42 U.S.C. § 2000ff-1.
1Rep. Ron Paul of Texas was the lone dissenter.