The Network received an inquiry about how privacy and insurance laws treat information derived from genetic testing.
The Genetic Information Nondiscrimination Act, or GINA, is a federal law that prohibits many employers from firing a person based on his or her genes and makes it illegal for a health insurance company to raise rates or to deny coverage because of a person’s genetic information. However, GINA only applies to health insurance and doesn't apply to companies that sell life insurance, disability insurance, or long-term-care insurance.
Many states have laws similar to GINA. For example, Missouri law prohibits a health insurer from requiring, requesting, or using without a person’s consent genetic testing when “determining eligibility for coverage, establishing premiums, limiting coverage, renewing coverage or any other underwriting decision” and prohibits an employer from using genetic testing results to discriminate against an employee.
Some states go beyond GINA and prohibit life, disability, and long-term-care insurance companies from using genetic information. For more information, check out the state table of legal issues relating to discrimination, privacy, and genetic information published by the National Conference of State Legislatures. Other states, such as Missouri do not prohibit such uses. In fact, Missouri law specifically states that the genetic information requirements do not apply to “[u]nderwriting in connection with individual or group life, disability income or long-term care insurance.”
With regard to the privacy of the genetic information, GINA requires that genetic information be treated as health information under the Health Insurance Portability and Accountability Act and that the use or disclosure of such information by a health insurer for underwriting purposes not be permitted. State laws generally consider the information to be confidential and prohibit its unauthorized disclosure. Missouri law for example requires, with a few exceptions, that “[a]ny person who, in the ordinary course of business, practice of a profession or rendering of a service, creates, stores, receives or furnishes genetic information . . . shall hold such information as confidential medical records and shall not disclose such genetic information except pursuant to written authorization of the person to whom such information pertains or to that person's authorized representative.”
While the results of genetic testing are private, if a person knew his or her genetic test results and applied for life, disability, or long-term-care insurance and failed to disclose the testing if required in the application and allowed under state law, they would be omitting information. Some insurers have indicated that a person in this situation would risk being penalized for failing to disclose the results and might lose coverage.
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