Federal Executive Order 13145 "To Prohibit Discrimination in Federal Employment Based on Genetic Information" was signed on February 8, 2000. The executive order prohibits federal government agencies from obtaining genetic information from employees or job applicants and from using genetic information in hiring and promotion decisions. The executive order defines genetic information as information about an individual's genetic tests; information about the genetic tests of an individual's family members; and information about the occurrence of a disease, medical condition, or disorder in family members of the individual.
President George W. Bush repeatedly expressed strong support for passing genetic nondiscrimination legislation. On June 23, 2001, he devoted his weekly radio address to the need for such legislation, and he has reiterated this position at other public forums. The 107th Congress saw the introduction of five different bills aimed at preventing discrimination on the basis of genetic information, but none were enacted.
On October 14, 2003, the U.S. Senate passed the Genetic Information Nondiscrimination Act of 2003 (S.1053), which would have prohibited discrimination on the basis of genetic information in health insurance coverage and the workplace. Dr. Francis S. Collins, the director of the National Human Genome Research Institute, published a statement expressing his contention that:
No one should lose his job because of the genes he inherited. No one should be denied health insurance because of her DNA. But genetic discrimination affects more than jobs and insurance. It slows the pace of science. We know that many people have refused to participate in genetic research for fear of genetic TABLE 6.2
Statement of presidential policy on the misuse of personal genetic information for health insurance or employment purposes, 2005
SOURCE: "Statement of Administration Policy," in Policy and Ethics: Critical Issues and Legislation Surrounding Genetic Research, U.S. Department of Health and Human Services, National Institutes of Health, National Human Genome Research Institute, http://www.genome.gov/PolicyEthics/ (accessed February 17, 2005)
The administration favors enactment of legislation to prohibit the improper use of genetic information in health insurance and employment. The administration supports Senate passage of S. 306 (Genetic Information Nondiscrimination Act of 2005) as reported, which would prohibit group health plans and health insurers from denying coverage to a healthy individual or charging that person higher premiums based solely on a genetic predisposition to developing a disease in the future. The legislation also would bar employers from using individuals' genetic information when making hiring, firing, job placement, or promotion decisions. The mapping of the human genome has led to more information about diseases and a better understanding of our genetic code. Scientists are pursuing new diagnostics, treatments, and cures based on this information, but the potential misuse of this information raises serious moral and legal issues. Concern about unwarranted use of genetic information threatens access to utilization of existing genetic tests as well as the ability to conduct further research. The administration wants to work with Congress to make genetic discrimination illegal and provide individuals with fair, reasonable protections against improper use of their genetic information. discrimination. This means that without the kind of legal protections offered by this bill, our clinical research protocols will lack participants, and those who do participate will represent a self-selected group.
The 2003 bill, however, was not enacted into law. A virtually identical bill, the Genetic Information Nondiscrimination Act of 2005 (S.1053), was unanimously passed on February 17, 2005. President Bush expressed his support for the bill in a Statement of Administrative Policy. (See Table 6.2.) The House of Representatives was debating similar legislation as of June 1, 2005.
Health Insurance Portability and Accountability
Act of 1996
On August 21, 1996, President Bill Clinton signed the Health Insurance Portability and Accountability Act (HIPAA, PL 104–191). Also known as the Kennedy-Kassebaum Act (for its sponsors, senators Nancy Kassebaum, R-Kansas, and Edward Kennedy, D-Massachusetts), this legislation aims to provide better portability (transfer) of employer-sponsored insurance from one job to another. By preventing "job lock"—the need to remain in the same position or with the same employer for fear of losing health care coverage—the Act was designed to afford American workers greater career mobility and the freedom to pursue job opportunities. Industry observers and policy makers viewed HIPAA as an important first step in the federal initiative to significantly reduce the number of uninsured people in the United States. They also hoped it would provide a measure of protection from genetics-based discrimination.
HIPAA stipulates that American workers who have previous insurance coverage are immediately eligible for new coverage upon changing jobs. The law prohibits group health plans from denying new coverage based on past or present poor health and guarantees that employees can retain their health care coverage even after they leave their jobs. New employers can still require a routine waiting period (usually no more than three months) before paying for health benefits, but the new employee who applies for insurance coverage can be continuously covered during the waiting period.
The following section describes some of the major provisions of HIPAA. In addition to the provisions discussed, the act clarifies current law and stiffens penalties for fraud and abuse. The law applies to both group and individual health insurance policies.
PREEXISTING MEDICAL CONDITIONS.
Prior to the passage of HIPAA, insurers could refuse to cover treatment for a preexisting disease or medical condition—an illness or condition that had been diagnosed or treated before a person enrolled in the health insurance program. Under the new law, if the preexisting condition has been diagnosed or treated within six months of the patient's enrollment in the insurance program, the insurance company can withhold coverage for that condition for no longer than twelve months. If the preexisting condition has not been diagnosed or treated within six months of changing insurance, there is no waiting period beyond the short time an employer may require before providing benefits to a new employee.
This provision, along with the portability provision, means that insured employees are no longer trapped by the fear of losing their health insurance coverage if they lose or leave their jobs. In the past many workers stayed in unsatisfactory jobs because they were ill or had dependents with existing medical conditions. They were afraid to change jobs for fear of losing coverage or having to wait a long time before obtaining new coverage.
For health insurance offered to groups, HIPAA offers the following protections from discrimination:
- It prohibits excluding an individual from group coverage because of past or present medical problems, including genetic information.
- It forbids charging a higher premium to an individual than to others in the group.
- It limits exclusions in group health plans for preexisting conditions to twelve months, and prohibits such exclusions if the individual has been previously covered for that condition for twelve months or more.
- It clearly states that genetic information in the absence of a current diagnosis of illness shall not be considered a preexisting condition.
HIPAA does not, however, prohibit the use of genetic information as a basis for charging a group more for health insurance. It neither limits the collection of genetic information by insurers nor prohibits insurers from requiring an individual to take a genetic test. The act does not limit the disclosure of genetic information by insurers, and it does not apply to individual health insurers unless they are covered by the portability provision.
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