The federal Genetic Nondiscrimination Act protects genetic privacy and against discrimination in health insurance. Below you will find an overview of its protections.
Overview of GINA Health Insurance Provisions.
Title I of GINA strengthens and clarifies existing HIPAA nondiscrimination and portability provisions through amendments to the Employee Retirement Income Security Act of 1974 (ERISA), the Public Health Services Act (PHSA), and the Internal Revenue Code (IRC), as well as to the Social Security Act (SSA). In this way, group plans under ERISA, group and individual plans under the PHSA, Church Plans under the IRC, and Medigap plans under the SSA are all brought under the jurisdiction of the law. The complexity of the health care financing system required this multi-faceted approach in order to ensure protection for all individuals, regardless of their insurance situation.
Prohibited Health Insurer Practices.
Broadly, GINA prohibits health insurers from engaging in three practices: (1) using genetic information about an individual to adjust a group plan’s premiums, or, in the case of individual plans, to deny coverage, adjust premiums, or impose a preexisting condition exclusion; (2) requiring or requesting genetic testing; and (3) requesting, requiring, or purchasing genetic information for underwriting purposes.
Discrimination in Premium Setting and Eligibility Prohibited.
GINA prohibits health plans, group and individual health insurers and issuers, and issuers of Medicare supplemental policies from adjusting a group or individual’s premium based on genetic information about an individual in the group, an individual seeking individual coverage, or an individual’s family members. It also prohibits individual insurers from conditioning eligibility or continuing eligibility on genetic information, and prohibits individual insurers from treating genetic information as a preexisting condition. Issuers of supplemental Medicare policies may not deny or condition the issuance of a policy based on genetic information (and may not impose a preexisting condition exclusion based on genetic information).
Genetic Testing Requirements Prohibited.
GINA prohibits health plans, group and individual health insurers and issuers, and issuers of Medicare supplemental policies from requesting or requiring that individuals or their family members undergo a genetic test. This prohibition does not limit the authority of a health care professional to request that an individual undergo genetic testing as part of his or her course of health care. The act provides for a research exception to this provision, by allowing a group or individual insurance issuer to request, but not require, an individual to undergo genetic testing if specific conditions are met.
Collection and Use of Genetic Information Restricted.
GINA prohibits health plans, group and individual health insurers and issuers, and issuers of Medicare supplemental policies from requesting, requiring, or purchasing genetic information for the purposes of underwriting prior to an individual’s enrollment or in connection with enrollment. “Incidental collection” of genetic information would not be considered a violation.
Application to Genetic Information on a Fetus or Embryo.
Title I of the act clarifies that genetic discrimination based on the genetic information of either the fetus of a pregnant woman or an embryo legally held by an individual or family member is prohibited.
Rule of Construction.
GINA provides clearly that nothing in the act should be construed to preclude the use of information about a manifested disease or disorder in an individual (or an individual’s family member) by health plans, group and individual health insurers and issuers, and issuers of Medicare supplemental policies to establish premiums or conditions of eligibility. In addition, nothing in the act should be construed to prohibit health plans, group and individual health insurers and issuers, and issuers of Medicare supplemental policies from obtaining or using the results of genetic tests to determine payment. However, only the minimum amount of information required to achieve this purpose may be requested.
Privacy and Confidentiality.
GINA directs the Secretary of Health and Human Services to revise the HIPAA Privacy Rule to reflect that genetic information shall be treated as health information and the use or disclosure by a covered entity of protected health information (i.e., genetic information) for the purposes of underwriting shall not be a permitted use or disclosure. The Secretary, in consultation with the Secretaries of Labor and the Treasury, has 12 months after enactment of the act to issue final regulations to carry out these revisions.
Remedies and Enforcement.
GINA permits the Secretary to impose a penalty of $100 per day per beneficiary or participant to whom the failure relates during a period of noncompliance with the provisions in Title I. Where willful neglect was found, there is established a minimum penalty of $2,500, or $15,000 for more severe or prolonged violations. There are three limitations to the penalties that may be imposed by the Secretary. First, the penalty does not apply if the person otherwise liable for the penalty did not know that the noncompliance occurred. Second, the penalty does not apply to failures corrected within 30 days (in cases not due to willful neglect). Finally, a limit to the total penalty for unintentional failures is set at $500,000 or 10% of the aggregate amount paid or incurred by the plan sponsor during the preceding year for group health plans.
Additional California Provisions
1) California Health and Safety Code Section 1374.7 (1994) – Addendum to the Knox-Keene Health Care Service Plan Act of 1975:
Prohibits health care service plans from refusing to enroll an individual, or discriminating in price or other terms, on the basis of a person’s genetic characteristics alone.
2) California Civil Code Section 56.17 (2003)
Prohibits a health care service plan from disclosing your genetic test results without specific written permission.