The federal government issued new rules on October 1 protect individuals against having genetic information used unfairly to raise health insurance rates, deny health insurance, or limit coverage because of pre-existing conditions.
As part of the implementation of the Genetic Information Non-Discrimination Act (GINA), the Departments of Health and Human Services, Labor, and Treasury published the new regulations in the Federal Register, providing for a comment period before they become final.
In addition, the Office for Civil Rights in the Department of Health and Human Services proposed changes to the Health Insurance Portability and Accountability Act (HIPAA) to clarify that genetic information is health information. As such, insurance companies cannot use or disclose genetic information to compute premiums, deny coverage, or deny benefits because of pre-existing conditions. Penalties for violating the HIPAA Privacy Rules range from $100 to $50,000 for each violation.
Further,under GINA, neither group nor individual health plans can request, require, or buy genetic information for underwriting purposes. Plans are also forbidden to require genetic testing from individuals or their family members.
Commenting on the new rules, HHS Secretary Kathleen Sebelius said,
Echoing the late Senator Ted Kennedy, our efforts to protect Americans undergoing genetic testing from having the results of that testing used against them by their insurance companies is one of the ‘first major new civil rights’ of the new century. Consumer confidence in genetic testing can now grow and help researchers get a better handle on the genetic basis of diseases. Genetic testing will encourage the early diagnosis and treatment of certain diseases while allowing scientists to develop new medicines, treatments, and therapies.
Labor Secretary, Hilda L. Solis added,
Today’s genetic technologies yield data that are vital to helping Americans make personal, medical decisions. It is essential that we protect such information and ensure it is not misused by health plans or insurers. The rules issued today protect individuals against the unwarranted use of information related to their personal health because no one should have to fear that disclosure of their medical data will put their job or health coverage at risk.
What This Means for Patients and Their Families
C3 worked with the Genetic Alliance to get GINA passed, and we are happy to see the rules put in place to enforce it.
This should give reluctant family members of familial adenomatous polyposis (FAP), Lynch syndrome, and other inherited colorectal cancer patients confidence to get genetic testing. If they have inherited a mutation, they can take steps to protect themselves.
There should be no need for being tested anonymously or paying for genetic testing privately for fear of health insurance discrimination.
However, while GINA protects against discrimination in employment and health insurance based on genetic information or family medical history, its protection does not extend to life, disability, or long-term care insurance.
It also only covers people who have not already had a disease. So colorectal cancer patients and survivors are not protected from health insurance discrimination by GINA. Insurers can deny individual coverage or charge higher premiums to people who have had colorectal cancer. Employment discrimination is covered by the Americans with Disability Act (ADA) for cancer survivors.