Genetics and Employment

Genetics and Employment

By Alissa Johnson
National Conference of State Legislatures

Genetic discovery has real implications for the workplace. While employers and employees tend to agree that genetic information has few appropriate uses at work, employers have economic incentives to exclude from the workforce individuals who are at a higher risk of absenteeism, reduced productivity, higher turnover, increased rates of occupational illness or—most significantly—increased medical claims. To address this concern, most states have enacted genetic workplace protections to prevent misuse of genetic information.

Federal Action

Congress has not enacted legislation to specifically address the use of genetic information in employment decisions. However, in 1995, the Equal Employment Opportunity Commission interpreted "disability" in the Americans with Disabilities Act (ADA) to include genetic predisposition to disease. Conflicting rulings raise questions whether the Supreme Court would accept this EEOC interpretation. In February 2000, President Clinton banned genetic discrimination in the federal workplace and called on Congress to pass a federal genetic information nondiscrimination law for private sector employment. Legislation that would prohibit discrimination in employment based on genetic information is currently pending in Congress.

State Action

States addressed genetics and employment prior to the federal government with the first law to forbid genetic discrimination in employment enacted by the Wisconsin Legislature in 1991. Today laws in 32 states restrict the use of genetic information in the workplace. As of August 2004, nine states considered genetics and employment legislation so far this year. The Washington Legislature enacted a new measure in 2004 that prohibits employers from requiring genetic testing as a condition of employment.

Most state genetic employment laws have “exceptional” genetic protections, which establish higher legal protections for genetic information than other health data. A few states such as Illinois, Michigan and Washington take an inclusive approach to genetics and employment issues and treat genetic information the same as any other form of medical information. These states incorporate standards for the use of genetic information into current workplace disability protections. In addition, California and Minnesota, which have genetic-specific protections, also expanded their disability laws in recent years to curb the use of medical information by employers more than any other states.

Components of State Protections

Access to and Acquisition of Genetic Information. Violations of privacy in the workplace can be discrete and difficult to identify, particularly in the case of genetic information. As a result, many states have taken steps to limit employer access to genetic information to prevent the likelihood that discrimination could occur. Policymakers first dealt with this issue with the enactment of the ADA and disability protections in some form in every state. These laws typically involve restrictions on medical examinations and inquiries in the workplace and set basic confidentiality standards for employees’ medical information. Although these protections may extend to genetic information, they regulate—but do not forbid—employer access to medical information, including genetic information. In fact, disability laws may allow genetic tests and inquiries by employers in limited circumstances.

Six states have closed this potential gap through genetic privacy laws that require any party, including employers, to obtain consent before accessing or acquiring an individual’s genetic information. An additional nine states forbid employers from obtaining genetic information through their genetic discrimination laws. Eighteen states also have enacted laws that place greater limits on the ability of employers to request genetic information.

Use of Genetic Information. State genetics and employment laws often identify appropriate uses of genetic information by employers. Some observers—in fear of great potential for employer misuse—want absolute bans on the use of genetic information. This approach would treat genetic predispositions in the same way as information protected under fair employment practices laws. Others—in hope of valuable future benefits—prefer restrictions during some stages of employment only, such as prior to an offer of employment, similar to disability protections. A wide range of alternatives exists between the two extremes. Some state laws permit employers to use genetic information in the workplace, particularly when the reasons for the use of genetic information are job-related.

Definitions of Genetic Information. The definition of genetic information used in state statutes establishes the scope of protections. The inclusion or omission of terms in the definition of genetic information erects the boundary between “protected” versus “unprotected” genetic information. The definition of genetic information may only cover predictive genetic information or genetic test results, or the protections may extend to information about genetic testing—such as a bill noting the receipt of genetic services, family history, inherited characteristics, or symptomatic or presymptomatic genetic conditions.

Exceptions. Many state genetics and employment laws make exceptions with regard to employer access, acquisition or use of genetic information. These exceptions typically are limited to narrowly defined “job-related” situations, such as tests to measure an individual’s ability to perform essential job functions, to promote workplace safety or to investigate a worker’s compensation claim. Factors to determine appropriate use may include the relevance of genetic information to job qualifications, health and safety issues and employer liability.

Enforcement

State legislators may want to consider whether to enforce genetics and employment laws in a similar fashion to other fair employment practices laws or establish special protections. Enforcement provisions may outline methods for filing complaints, investigational procedures, due process and appropriate remedies in the event of wrongdoing. States have enacted a mixture of administrative, civil and—to a much lesser extent—criminal processes to give teeth to genetic discrimination laws. Most states require that employees submit claims of unlawful employment practices with a state agency or the EEOC.

Selected Reference

National Conference of State Legislatures, Blue Ribbon Panel on Human Genetic Technologies, Genetics Policy Report: Employment Issues, Denver: NCSL, 2001.

Contacts for More Information

Alissa Johnson
NCSL-Washington, D.C.
Genetic Technologies Project
(202) 624-5400
alissa.johnson@ncsl.org

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