Coalition for Genetic Fairness

GINA covers genetic information of an individual and the genetic information of family members (for example, in determining family health history of disease). GINA does not cover an individual's manifested disease or condition - a condition from which an individual is experiencing symptoms, being treated for, or that has been diagnosed.

GINA outlines the following activities as unlawful employment practices and discriminatory on the basis of genetic information:

Furthermore, employers should be aware that it unlawful for an employment agency, labor organization, or training program to fail or refuse to refer an individual for employment on the basis of genetic information, nor may the agency or labor organization attempt to cause an employer to discriminate against an individual on the basis of genetic information.

When the information is inadvertently provided as part of the individual's medical history or the medical history of a family member;

When the information is publicly available (although not when the information is contained in medical databases or court records);

When the employer has obtained the individual's written authorization as part of an employer-sponsored genetic monitoring program of the biological effects of toxic substances in the workplace. This is only permissible if Federal or State law requires such a monitoring program. In such cases, only the healthcare professional and the employee can know of the individual and identifiable genetic information. The employee must be informed of their individual monitoring results, but the employer can only have access to the collective genetic information of the entire group of employees, without identifying information;

When the employer offers health or genetic services, including services offered as part of a wellness program, and with the individual's written authorization. In such cases, only the healthcare professional or board certified genetic counselor involved in providing the services may know of individually identifiable genetic information. Again, the employer may know only of the collective genetic information of the entire group of employees, without identifying information; and

Where the employer operates as a law enforcement entity and requires the individual's DNA for quality control purposes in the forensic lab or human remains identification settings. The information may not be used for any determinations of the terms of employment.

Any genetic information an employer possesses about an individual must be treated as the confidential medical record of the individual and must be maintained in separate forms and in separate files. An individual's genetic information may not be disclosed except at the individual's written request or in response to a court order. However, in order to maintain compliance with existing laws, an employer may provide an individual's genetic information to the Federal, State, or local authorities.

The provisions of GINA have impacts at various levels of the employment sector, especially in the human resources division. Businesses and organizations need to prepare for the impact of GINA on their human resource practices.