Information Database

On November 21, 2009, the Genetic Information Nondiscrimination Act of 2008 (GINA)became effective.  Title I of the Act prohibits genetic discrimination in health insurance.  Title II prohibits discrimination in employment on the basis of genetic information.

Title II makes it unlawful for an employer, employment agency, labor union or joint labor-management committee from failing to hire, discharging, or otherwise discriminating against an employee, individual, or member because of genetic information. 

Genetic information includes information about an individual’s genetic tests and the genetic tests of an individual’s family members, as well as information about any disease, disorder, or condition of an individual’s family members (i.e. an individual’s family medical history).  Family medical history is included in the definition of genetic information because it is often used to determine whether someone has an increased risk of getting a disease, disorder, or condition in the future.

GINA also prohibits an employer from requesting, requiring, or purchasing an employee's genetic information unless the information is necessary to comply with certification requirements of family and medical leave laws, the information is to be used for genetic monitoring of the biological effects of toxic substances in the workplace, or the employer conducts DNA analysis for law enforcement purposes as a forensic laboratory.

Under the Act, genetic information about an employee must be maintained in separate files and be treated as a confidential medical record.

An employer can not disclose any genetic information it has about an employee except (1) to the employee upon request, (2) to an occupational or other health researcher, (3) in response to a court order, (4) to a government official investigating compliance with the Act if the information is relevant to the investigation, (5) in connection with the employee's compliance with the certification provisions of the FMLA or such requirements under state family and medical leave laws, or (6) to a public health agency.

Title II is enforced through the EEOC as any charge under Title VII of the Civil Rights Act of 1964.  Like Title VII, GINA prohibits retaliation against any employee who "has opposed any act or practice made unlawful" by the act or any employee who participates in any investigation, proceeding, or hearing under GINA.  The final regulations are expected to be released in the near future.