Under the Genetic Information Nondiscrimination Act of 2008, or GINA, your privacy is protected when it comes to requesting, requiring or buying such information. Insurance plans are not allowed to collect an individual’s genetic information as part of the underwriting process. They cannot obtain genetic information prior to an individual’s enrollment or in connection with enrolling in a health care plan.

When Genetic Information Cannot be Collected

Plans are not allowed to collect genetic information during the underwriting process. According to GINA, underwriting purposes can be very broad but it means that genetic data cannot be collected for these types of purposes:

  • Determining eligibility of benefits during or after the enrollment process
  • Computing the premium under a plan
  • Applying any preexisting conditions which may be allowed under the plan
  • Any other activities which are related to creating, renewing or replacing a health contract

In general, GINA prohibits the use of genetic information for determining rewards. It cannot be used as part of a health risk assessment.

When Genetic Information Can be Collected

There are some times when it is permissible to collect genetic information. Genetic information can be collected under some conditions if these conditions are met:

  • The genetic information is not used in any way for the underwriting purpose
  • If it is reasonable to think that the genetic information includes relevant health information

Genetic Information and Health Risk Assessments

Sometimes health plans will ask an individual to complete a health risk assessment before they enroll or as part of the enrollment process. If the Health Risk Assessment asks for genetic information even in the family medical history, it is forbidden. A plan can use a risk assessment which asks for the medical history including genetic data if it is completed after enrollment has already occurred. A health plan is allowed to offer a reward or discount for individuals who complete a health risk assessment. However, the assessment has to state plainly that genetic information should not be given.