Health insurers may not require individuals to provide their genetic information or the genetic information of a family member to the insurer for eligibility, coverage, underwriting, or premium setting standards. Health insurers may not request or require that an individual or an individual’s family member undergo a genetic test.
There is a research exception. For joint research activities covered by health insurers and other external research entities, a health insurer in either the group or individual market may request, but not require, in writing that an individual undergo a genetic test. The individual may voluntarily elect to participate in such a genetic test, but noncompliance must have no negative affect on the premium or enrollment status of the individual. Genetic information may only be used for research. Genetic information may not be used for underwriting purposes.
An individual’s medical information must be maintained in separate files and be kept confidential. Genetic information may not be disclosed except at the individual’s written request or in response to a court order. In addition an employer may be required to provide information to federal, state or local authorities.