Workplace genetic testing raises discrimination concerns

Advances in genetic research have renewed attention on the workplace implications of genetic testing.

Genetic research has many potential benefits. Testing can help predict whether individuals are at risk of developing certain diseases, allowing them to take proactive steps to protect their health. As scientists begin to unlock the secrets of the human gene, for example, it’s becoming easier to predict who might develop cancer and who might not.

But there is growing concern that employers with access to genetic information may use it to discriminate. Plus, employees fear that health insurers may increase premiums—or even deny, limit or cancel insurance coverage—for people with certain genetic markers.

Indeed, limiting health costs appears to be a primary motivation for many employers to use genetic tests. Genetic testing also can improve workplace safety—for example, by flagging conditions that might cause seizures in employees who operate dangerous equipment.

Congress tackles genetic discrimination

The U.S. Congress has been paying attention. Earlier this year, the House passed the Genetic Information Nondiscrimination Act (GINA). If enacted, GINA would prohibit discrimination in employment and health insurance coverage based on genetic information, preventing employers from:

  • Refusing to hire, discharge or discriminate against individuals because of genetic information
  • Limiting, segregating or classifying employees based on genetic information in ways that would adversely affect their employment status
  • Requesting, requiring or purchasing genetic information, except in certain circumstances.

GINA would create guidelines on how employers maintain and use employees’ genetic information and prohibit them from disclosing it.

States respond

The ADA and Title VII of the Civil Rights Act of 1964 currently provide some federal protection against discrimination resulting from genetic testing (see box below). The Health Insurance Portability and Accountability Act, or HIPAA, places some limits on the use of genetic information for health insurance purposes.

In the meantime, states have started confronting the issue of genetic discrimination.

Currently, 41 states have laws that protect people from genetic discrimination by insurance companies. Thirty-two have laws that prohibit genetic discrimination in the workplace. Although Pennsylvania law does not tackle those issues yet, nearby New Jersey, New York and Maryland have laws addressing genetic discrimination.

Implementing workplace policies

The legislative focus on the workplace and the insurance implications of genetic testing (not to mention existing federal anti-discrimination laws) should send a strong signal to employers: Take proper precautions to avoid violating employees’ rights. HR can take the lead by:

  • Reviewing state laws regarding genetic discrimination to make sure your organization complies
  • Reviewing your genetic testing practices in light of existing federal anti-discrimination laws
  • Reviewing how your recruiting and hiring processes use physical and genetic exams
  • Ensuring you have procedures in place to keep genetic testing information and results confidential and securely stored
  • Establishing procedures for getting informed consent from employees who will undergo genetic testing and advising them of the medical and nonmedical consequences of the tests.

Taking those steps will go a long way toward preventing workplace discrimination based on genetic testing, and should help prevent future litigation as well.

Genetic testing, the ADA and Title VII

Even without a specific federal law prohibiting discrimination based on genetic tests, creative plaintiffs have based discrimination claims on the ADA and Title VII.

In 2001, the EEOC settled a claim against the Burlington Northern and Santa Fe (BNSF) Railway alleging that the company violated the ADA by genetically testing or seeking to test 36 employees without their knowledge or consent. The EEOC argued the tests violated the ADA because they were not job-related and that any condition of employment based on such tests would be cause for illegal discrimination based on disability. The BNSF Railway settled the claim for $2.2 million.

In Norman-Bloodsaw v. Lawrence Berkeley Laboratory, the 9th Circuit Court of Appeals addressed the issue of genetic testing in the workplace. As part of a mandatory pre-employment medical exam, the employer—without the employees’ knowledge or consent—administered blood and urine tests to identify, among other things, workers carrying the sickle cell trait and those who were pregnant.

Although the 9th Circuit ultimately found that the tests did not violate the ADA, the court ruled that the employer violated Title VII by singling out black employees for sickle cell trait testing and by performing pregnancy testing on female employees. The court held that Title VII applied because the employer improperly based the employment of black and female job applicants on tests to which white males were not subjected.