ASK: Our company wants to conduct a health risk assessment before you enroll in our group health plan. While we would not ask any questions related to a person’s family medical history, can we further minimize the risk of violating GINA’s prohibition against collecting genetic information?
ANSWER: Your health plan can minimize the risk of violating the Genetic Information Nondiscrimination Act of 2008 (GINA) if its health risk assessment conforms to 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 testing; (2) genetic testing of the individual’s family members; and (3) the manifestation of a disease or disorder in a member of the individual’s family (ie, family medical history).
If a plan collects genetic information incidentally in connection with obtaining other information about an individual, it is not a violation of GINA as 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 can arise with questions that are normally included in health risk assessments.
For example, suppose a health risk assessment does not include direct questions about an individual’s genetic information (including family medical history). However, the last question says, “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, so it is reasonable to anticipate that answers may include genetic information. Therefore, any genetic information collected in response to such a question would not fall under 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 continued to state: “When answering this question, you must not include any genetic information. That is, please do not include any family medical history or information related to genetic testing, genetic services, genetic counseling, or genetic diseases for which you think you may be at risk.” However, as stated above, the plan may not use any genetic information it obtains incidentally for underwriting purposes.
For more information, see EBIA’s HIPAA Portability, Privacy, and Security Handbook at Section XI.H (“Nondiscrimination Based on Genetic Information”) and EBIA’s Group Health Plan Mandates handbook at Section XXII.C (“GINA Title I Health Insurance Nondiscrimination Requirements”).
Contributing editors: EBIA staff.