Is Genetic Information Collected by a Health Plan in Connection With Obtaining Other Information About an Individual a GINA violation?

QUESTION: Our company would like to conduct a health risk assessment prior to enrollment in our group health plan. While we would not ask any questions relating to an individual’s family medical history, can we further minimize the risk of violating GINA’s prohibition against collection of genetic information?

ANSWER: Your health plan may be able to minimize the risk of violating the Genetic Information Nondiscrimination Act of 2008 (GINA) if your health risk assessment fits within the “incidental collection exception.” Under GINA, group health plans are prohibited from collecting genetic information, either for underwriting purposes or prior to or in connection with enrollment. An individual’s genetic information means information about (1) the individual’s genetic tests; (2) the genetic tests of the individual’s family members; and (3) the manifestation of a disease or disorder in the individual’s family member (i.e., family medical history).

If a plan incidentally collects genetic information in connection with obtaining other information about an individual, it is not a GINA violation so long as the information is not used for underwriting purposes. This incidental collection exception will not apply if it is reasonable to anticipate that health information will be received unless the collection explicitly states that genetic information should not be provided. This situation may arise with questions typically included in health risk assessments.

For example, assume that a health risk assessment does not include direct questions about an individual’s genetic information (including family medical history). However, the last question reads, “Is there anything else relevant to your health that you would like us to know or discuss with you?” This type of question is too broad, making it reasonable to anticipate that responses may include genetic information. Therefore, any genetic information collected in response to such a question would not fall within the incidental collection exception. On the other hand, genetic information collected in response to this question would fall within the incidental collection exception if the question went on to state, “In answering this question, you should not include any genetic information. That is, please do not include any family medical history or any information related to genetic testing, genetic services, genetic counseling, or genetic diseases for which you believe you may be at risk.” As noted above, however, the plan may not use any genetic information it obtains incidentally for underwriting purposes.

For more information, see EBIA’s HIPAA Portability, Privacy & Security manual at Section XI.H (“No Discrimination on the Basis of Genetic Information”) and EBIA’s Group Health Plan Mandates manual at Section XXII.C (“GINA Title I Health Insurance Nondiscrimination Requirements”).

Contributing Editors: EBIA Staff.

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