GINA was first introduced in the House in 1995, finally passed in 2008 and signed into law by President G. W. Bush in May 2008.  GINA includes two titles. Title I amends portions of the Employee Retirement Income Security Act (ERISA), the Public Health Service Act, and the Internal Revenue Code, and addresses the use of genetic information in health insurance. Title II prohibits the use of genetic information in employment, prohibits the intentional acquisition of genetic information about applicants and employees, and imposes strict confidentiality requirements.

 The EEOC promulgated proposed regulations in February, and the comment period ended in May. Following revisions in light of public comments, the Commission will vote on a Final Rule.  The Final Rule approved by the Commission will then be coordinated through the Office of Management and Budget with other Federal agencies before it is published in the Federal Register.  EEOC anticipated that a Final Rule to implement Title II of GINA will be published well in advance of the law’s effective date of November 21, 2009, but as of today no final rule has been published.

 The guiding principle in the Senate’s report for the Bill and quoted in EEOC’s proposed regulations states that “GINA is designed to extend to individuals in the area of genetic discrimination the same procedures and remedies as are provided under Title VII.”  GINA applies to employers with 15 or more current employees.

 GINA Definitions:

 Genetic information is defined to include: information about an individual’s genetic tests; genetic tests of family members; manifestation of disease in family members; information about any request for or receipt of genetic services, or participation in clinical research, by an individual or family member, and/or genetic information of a fetus or embryo.  Genetic information does not include information about age and sex and does not include drug and alcohol tests, but would include testing to determine predisposition to alcohol abuse.

 Family Member is defined as persons who are or become related to an individual through marriage, birth, adoption, or placement for adoption; blood relatives through the 4th degree – children, siblings, parents, half-siblings, nieces, nephews, grandparents, great aunts and uncles, first cousins, great great grandparents, children of first cousins, everyone in between.

 Genetic test is defined as an analysis of human DNA, RNA, chromosomes, proteins, or metabolites that detects genotypes, mutations, or chromosomal change.

 An “employee” means an applicant, current and former employee.

 Title I Requirements:

 As of November 21, 2009, GINA will prohibit employers from obtaining any genetic information (which includes family medical history) from applicants or employees, except under certain very limited circumstances.  It generally will be unlawful for employers to ask applicants and employees whether a relative has or ever had certain medical conditions, such as cancer, diabetes, or heart disease.  Although questions about the health of an employee’s family member arguably are not likely to elicit information about whether an employee currently has a disability, GINA generally will prohibit such questions.  Employers, therefore, will likely violate GINA if they continue to ask questions about an employee’s family medical history as of November 21, 2009, even if the questions are considered part of a wellness program since, like the ADA, GINA requires that such a program be voluntary. Thus, it is no longer legal to get any genetic information from post-offer job applicants or employees undergoing fitness for duty exams.

 Employers will not violate GINA if they receive genetic information under the following limited circumstances: Inadvertent request (water cooler exception-how are you?)-casual conversation, includes email; Information provided by person requesting accommodation so long as request for information was not overly broad; Information contained in publicly available documents – e.g., newspaper obits, internet, TV, movies (not court records or medical databases), and information needed to comply with FMLA requests. With written authorization, the employer may sponsor federal or state mandated genetic monitoring of biological effects of toxins in the workplace.  Employers may receive results only as statistical compilation without identifiers.  With written authorization, employer may also sponsor health/genetic services as in a wellness program.  Employers may receive results only as a statistical compilation w/o identifiers.  An employer who is a law enforcement forensics lab and needs employee DNA for quality control can also receive and request genetic information.

 TITLE II Requirements:

 GINA prohibits employers from using genetic information in making decisions regarding hiring, firing, promotion, terms, conditions, privileges of employment, or compensation. Employers may not limit, segregate or classify an employee based on genetic information.  Employers may not retaliate against an employee who opposes any act unlawful under GINA, files charge of discrimination or assists another in doing so, gives testimony in connection with a charge.  Retaliation means conduct, whether related to employment or not, that a reasonable person would have found materially adverse, which might well have dissuaded a reasonable person from taking protected action. 

 If an employer acquires genetic information orally – keep it confidential; written – keep in a separate medical file; and never use the information to make any employment decision.  If an employer receives a request for an employee’s genetic information, do not disclose unless: the employee makes a written request for the information; a court orders disclosure, but it still should be a narrowly tailored response and you should also inform the employee of the request; or disclosure is required for the employee or the employer’s compliance with existing laws.

GINA does not cover diseases already manifested; age or gender claims; drug and alcohol tests; or disparate impact claims. A committee will be formed in 2014 to address the possibility of including disparate impact claims within GINA.

 Employees can file a charge with the EEOC or file suit directly in court for GINA violations and recover compensatory and punitive damages, equitable relief and attorney fees.