SHRM: Guidance, Clarification Needed for Genetic Bias Law

By Kathy Gurchiek Feb 26, 2009


Karen S. Elliott

The Society for Human Resource Management (SHRM) wants the U.S. Equal Employment Opportunity Commission to provide employers with guidance and clarification regarding a federal law on acquisition of genetic information of employees and their dependents.

Planned regulations, which the EEOC must issue by May 21, 2009, relate to Title II of the Genetic Information Nondiscrimination Act (GINA). Congress passed GINA in May 2008 to prohibit genetic information discrimination by health insurers and employers against employees and their dependents.

Congress crafted the legislation because of a belief that individuals were forgoing genetic tests that might show them that they were at risk for certain medical conditions and that employers or insurers might use that information against them, according to Christopher J. Kuczynski, assistant legal counsel for the federal government’s Americans with Disabilities Act policy division.

He and SHRM member Karen S. Elliott—an attorney with Gregory Kaplan, PLC, who has served as SHRM’s Virginia State Legislative Director—were among six panelists appearing before the EEOC during a two-hour public hearing Feb. 25, 2009.

The hearing kicked off a 60-day public comment period on the proposed rule-making for GINA.

SHRM is one of the founding members of the Genetic Information Nondiscrimination in Employment Coalition and has supported GINA’s passage, according to Elliott.

However, the regulation allows six exceptions to keeping that information confidential, and SHRM is concerned that employers could find themselves possessing genetic information involuntarily through the normal course of the workday or a casual inquiry to an employee returning from sick leave, said Elliott.

“The interplay of GINA, the ADA [Americans with Disabilities Act] and HIPAA [Health Insurance Portability and Accountability Act] creates significant complexities for HR professionals,” she pointed out in her statement.

Involuntary acquisition of genetic information, she said, must be differentiated clearly from capturing such information purposefully for discriminatory purposes. The EEOC’s rulemaking can help achieve this balance, said Elliott, who advises HR professionals regularly on issues related to discrimination, health care and privacy issues.

She asked the EEOC to provide employers with guidance “on situations that do not fall squarely into the exceptions enumerated in the statute.”

Those exceptions, according to Kuczynski, are:

  • Disclosure requested in writing by the person to whom the information relates.
  • Disclosure to an occupational health researcher if conducted in compliance with certain federal regulations.
  • Disclosure to comply with a court order, provided it is “carefully tailored” to the order and the covered entity informs the individual about the order and what information shall be disclosed.
  • Disclosure to government officials investigating compliance with GINA when the information is relevant.
  • Disclosure to comply with Federal Medical Leave Act requirements or similar state or local leave laws.
  • Disclosure to federal, state or local public health officials in connection with a family member’s contagious disease that presents an imminent hazard of death or life-threatening illness, as long as the employee is informed of the disclosure.

“GINA’s list of enumerated exceptions is far from a complete picture of the ways in which an employer may, willingly or unwillingly, receive genetic information about an employee or family member for an employee,” such as in a doctor’s excuse for an employee’s absence, Elliott said in a written statement.

SHRM is “hopeful” she said, that the EEOC can address “innocent or inadvertent acquisitions of genetic information.”

Also making comment before the EEOC:

  • Susannah Baruch, Law and Policy Director, Johns Hopkins Center for Genetics and Public Policy.
  • Jeremy Gruber, president and executive director, Council for Responsible Genetics.
  • Rae Vann, general counsel, Equal Employment Advisory Council.
  • Andrew J. Imparato, president and CEO, American Association of People with Disabilities.

“GINA is an important piece of legislation,” acting EEOC vice chair Christine M. Griffin said via teleconferencing. She called public comment on the Notice of Proposed Rule Making “a critical part of that process” to ensure that Congress’ intent “is properly carried out through our regulations.”

Kathy Gurchiek is associate editor for HR News. She can be reached at

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