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Friday, October 16, 2009

Employee Genetic Information Now Protected

Employee Genetic Information Now Protected
By Tommy Eden, Attorney
Reprinted Opelika Auburn News 10-18-09

Individuals’ genetic information (including family health history) will have greater protections through new regulations issued on October 7 by the U.S. Departments of Health and Human Services (HHS), Labor, and the Treasury. The interim final rule stated purpose is to “help ensure that genetic information is not used adversely in determining health care coverage and will encourage more individuals to participate in genetic testing, which can help better identify and prevent certain illnesses. This regulation will implement Title I of the Genetic Information Nondiscrimination Act of 2008 (GINA).”

However, GINA will have a huge impact on collection of Family Health History information by employers or group medical plans and wellness programs. “Genetic information is defined…as information about the individual's genetic tests or the genetic tests of family members, the manifestation of a disease or disorder in family members of such individual (that is, family medical history), or any request of or receipt by the individual or family members of genetic services.” Group health plans cannot: 1) increase premiums for the group based on the results of one enrollee’s genetic information; 2) deny enrollment; 3) impose pre-existing condition exclusions; 4) do other forms of underwriting based on genetic information; or 5) buy genetic information. Plans and issuers are generally prohibited from asking individuals or family members to undergo a genetic test.

GINA makes it an unfair employment practice for employers, employment agencies and others to discriminate against individuals based on “genetic information” in hiring, firing and other terms and conditions of employment. GINA also makes it unlawful to limit, segregate, or classify employees in any way that would deprive or tend to deprive them of employment opportunities because of genetic information. Remedies include compensatory and punitive damages and attorneys’ fees.

Additionally, HHS, through its Office for Civil Rights (OCR), just issued a notice of proposed rulemaking with changes to the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule to prohibit health plans from using or disclosing genetic information for underwriting purposes. Now the use or disclosure of genetic information in violation of the HIPAA Privacy Rule could result in a fine of $100 to $50,000 or more for each violation.

Regulation Notice at:

The HHS OCR HIPAA notice of proposed rulemaking is at:

Common Sense Counsel: GINA is far reaching and vastly complicated. Rule 1 - If you think you need to ask about an employee’s family medical history for any reason - don’t. Rule 2 - do not subject your employees to any genetic testing. Rule 3 – ask your group insurer what steps it is taking to comply with GINA and you will most likely hear silence on the line.

Tommy Eden is a Lee County native, an attorney with the local office of Constangy, Brooks & Smith, LLP and a member of the ABA Section of Labor and Employment Law and serves on the Board of Directors for the East Alabama SHRM Chapter. He can be contacted at or 334-246-2901. Blog at