The federal Genetic Nondiscrimination Act protects genetic privacy and against nondiscrimination in employment. Below you will find an overview of its protections.
Genetic Information Nondiscrimination Act (GINA):
Title II Employment Protections
Genetic information includes family health history, the results of genetic tests, the use of genetic counseling and other genetic services, and participating in genetic research.
GINA prohibits the use of genetic information in employment decisions, including hiring; firing; job assignments; and promotions by employers, unions, employment agencies, and labor-management training programs.
An employer, employment agency, labor union, or training program may not “request, require or purchase genetic information” with respect to the employee, individual, union member, or family member. These can be both deliberate and unintentional.
There are several important exceptions to this prohibition:
The first exception applies when one of these entities inadvertently requests or requires genetic information of the employee, individual, union member, or a family member. Congress intended this exception to address the so-called ‘water cooler’ problem, in which an employer unwittingly receives otherwise protected genetic information through casual contacts with a worker.
General inquires about an employee’s health (e.g. “How are you?)
However this exception would not apply to follow up probing questions that are likely to elicit genetic information.
Furthermore when an employer requests general health related information or documentation from anyone they must indicate at the time of the request that they do not want genetic information, otherwise they are not protected by the this exception if genetic information is obtained in this way.
Health or Genetic Services:
The second exception applies when health or genetic services are offered by the employer as part of a wellness program. To qualify for the exemption the employee must provide prior, knowing, voluntary, and written authorization; only the employee, individual, union member, or family member and the licensed health care profession or board-certified genetic counselor involved in providing such services can receive individually identifiable information concerning the results of the services; and any individually identifiable genetic information is only available for such services and shall not be disclosed to the employer except in aggregate terms that do not identify individuals.
An employer who provides financial incentives as part of their wellness program must allow employees to opt out of any questions on health risk assessments or other questionnaires that ask for genetic information without penalty. They must also allow employees who do not voluntarily provide their genetic information to qualify for specific programming in other ways.
The third exception is for information necessary for certification procedures under federal and state family and medical leave laws. It also applies to employers who are not covered by such laws but who have a policy that allows for leave to care for ill family members, as long as the policy is applied evenhandedly.
Publicly Available Information
The fourth exception, like the first, concerns the inadvertent acquisition of genetic information through publicly available sources such as newspapers or books as well as online sources but does not include sources where the employer is likely to obtain genetic information such as medical databases, court records or online sources with limited access. An intentional search for genetic information, even through publicly available sources, is not protected by this exception.
- An employer purchases a newspaper containing the obituary of an employee’s parent who died of breast cancer.
- An employer views an employee’s personal website and learns that they had a genetic test.
The fifth exception applies when the information involved is to be used for genetic monitoring of the biological effects of toxic substances in the workplace. However, in order for this exception to apply,
- The employer must provide written notice of the genetic monitoring to the employee
- The employee must provide prior, knowing, voluntary, and written authorization or the genetic monitoring must be required by federal or state law.
- The employee must be informed of individual monitoring results and the employer must receive results only in terms that do not disclose the identity of the employee.
- An employee may choose not to participate in such monitoring and may not be discriminated against as a result of this choice.
The sixth exception allows employers who conduct DNA analysis for law enforcement purposes (such as a forensic laboratory) to require genetic information from their employees, but only when it is used for analysis for quality or contamination. Properly conducted, such analysis should not reveal health-related information.
GINA also provides that, even if an exception applies, genetic information may not be used in a manner that violates nondiscrimination or confidentiality requirements.
Employers that do have genetic information in their possession must keep such information in the employees medical file, separate from personnel information.
An employer may not disclose genetic information except:
- To an employee
- To a family member of an employee with the employee’s permission
- To a researcher in compliance with part 46 of Title 45, Code of Federal Regulations
- As a result of a court order
- For FMLA compliance
An employer may not discriminate against an individual for exercising their rights under GINA