The Genetic Information Nondiscrimination Act, or GINA, enacted in May, 2008, prohibits discrimination by employers, employment agencies, apprenticeship programs, labor organizations, health care providers, and group health plans against individuals based on their genetic information. GINA also carefully regulates the acquisition, use and disclosure of genetic information by these same entities. In passing this far-seeing legislation, the federal government acknowledged the tremendous potential significance of advances in genetic research, so GINA also seeks to establish a balance between individual rights and privacy on the one hand, and the advancement of genetic research science on the other.
Development of GINA’s implementing Regulations was tasked to the EEOC, and on November 9, 2010, it published the Final Regulations implementing Title II, the Act’s employment provisions. 75 Federal Register, No. 216, 68912-68939, 29 CFR Part 1635. The most salient aspects of these Regulations are:
Jurisdiction and Enforcement – GINA borrows much from Title VII in terms of jurisdictional threshold (employers engaged in industry affecting interstate commerce with 15 or more employees), prohibited practices (discrimination in hiring, promotion, demotion, discipline, discharge, etc.; harassment; limiting, segregating or classifying employees based on genetic information; retaliation for opposition to or participation as a witness regarding alleged violation), enforcement procedure (exhaustion of administrative filing requirements), and remedies for violations (compensatory and punitive damages, attorney fees for successful claimants).
Definitions – Several terms not found in other federal statutes are defined with considerable specificity: Family Member, Family Medical History, Genetic Information, Genetic Services, Genetic Test and “Manifestation or Manifested.” This last refers to evidence, other than that learned through a genetic test, that an individual or family member has been or could reasonably be diagnosed with a particular disease, disorder or pathological condition. Title II of GINA has no application to employee medical information regarding a manifested disease, disorder or condition.
Acquisition of Genetic Information – Employers and other covered entities are prohibited from requesting the genetic information of an employee/applicant/member or that individual’s family members. The term “request” is broadened to include internet searches, “actively listening” to third-party conversations and searching personal effects for the purpose of acquiring genetic information, as well as inquiries about personal health that are likely to lead to acquisition of genetic information. There are 6 stated exceptions to this prohibition:
- Inadvertently requesting or requiring genetic information – Known euphemistically as the “water cooler exception,” this might happen as a result of casual workplace conversations or in the course of lawfully requesting medical information to assess such things as initial post-offer, pre-employment eligibility  or reasonable accommodation of a less-than-apparent disability. The Regulations, Section 1635.8(b)(i)(B), contain specific recommended language for employer use in submitting medical information requests that clearly put the provider on notice the employer should not be provided the subject employee’s genetic information.
- Requesting medical information as required, authorized or permitted by Federal, State or local law – The best example here would be FMLA requests based on the employee’s own serious health condition.
- Requesting medical information in support of employee leave requests not governed by law – This exception applies only so long as ADA requirements are otherwise satisfied in the employer’s request.
- Acquiring genetic information from sources commercially and publicly available – This exception applies only to sources that are completely and genuinely open to the public at large, and it will not shield an employer that accesses such sources with the specific intent of acquiring an individual’s genetic information.
- Acquiring genetic information for the purpose of “genetic monitoring” with regard to toxic substances in the workplace – This exception applies only where the monitoring is either required by law or conducted only with each individual employee’s prior knowing, voluntary and written authorization. Furthermore, reports to the employer on the results of monitoring must be in aggregate terms that do not disclose the identity of individual employee subjects.
- Acquiring genetic information of employees outside the employment context – This exception refers to situations where law enforcement agencies may need employee DNA in the course of a criminal investigation or medical providers may need employee DNA in rendering medical treatment to the employee.
Confidentiality of genetic information – The Regulations make it clear the employer’s duty to maintain employee genetic information is prospective only and does not require it be kept in its own separate file; it is permissible to maintain such information with the confidential employee medical files required under the ADA. Also, employers need not reduce to written form employee genetic information received by the employer verbally, although the restrictions on employer disclosure (See, below) still apply fully.
Disclosure of genetic information – GINA’s prohibition on disclosure of employee genetic information is defined best by examining the exceptions to the prohibition:
- Disclosure to an employee (or member) who submits a written request for their own information;
- Disclosure to an occupational or other health researcher, provided the research is conducted in accordance with other federal regulations involving research on human subjects (45 CFR Part 46);
- Disclosure pursuant to Court Order, provided disclosure is strictly limited to genetic information specified in the Order and the employee is provided written notice of the ordered disclosure;
- Disclosure to government officials investigating compliance with Title II of GINA;
- Disclosure made in support of employee’s compliance with FMLA or similar state laws; and
- Disclosure to federal, state or local public health agencies dealing with contagious disease that presents imminent hazard of death or life-threatening illness, provided the employee is notified of the disclosure.
Employer Wellness Programs – Employers may lawfully acquire employee genetic information in the course of administering offered health or genetic services, including Wellness Programs. However, the program itself must be voluntary and individual employees must have given prior knowing, voluntary and written authorization (on understandable forms that specify both the information being sought and the safeguards in place to prevent subsequent disclosure).
 Although no employer-required medical examination may now include requests for “family medical history” information.