Genetic testing - Visions

HR Magazine, Oct, 1992

BACKGROUND

Since James Watson and Francis Crick first identified the molecular structure of DNA in 1961, scientists have been working to decode the secrets of human genetic material. Already, they have made impressive gains. It is now possible to test for a variety of diseases and predispositions for diseases including cystic fibrosis, Huntington's disease and sickle-cell anemia.

In 1989, the pace of genetic research quickened with the funding of the Human Genome Project, a 15-year program designed to determine the location and chemical sequence of the 100,000 or more genes contained in human DNA. While advances in genetic research promise major breakthroughs in the early diagnosis or prevention of disease, they also have raised concern about their uses outside the laboratory, particularly their uses in the workplace.

According to a 1989 Office of Technology Assessment report, only 1 percent of employers currently engage in genetic testing, but experts have argued this number could mushroom in the next decade as the reliability and feasibility of genetic testing improves. As used in the workplace, "genetic testing" typically refers to two related but distinct practices: genetic screening and genetic monitoring.

Genetic screening is usually a one-time test used to identify susceptibility to inherited diseases such as muscular dystrophy, Huntington's disease and perhaps someday, cancer, heart disease and Alzheimer's. Genetic monitoring, on the other hand, involves multiple tests over time to detect mutations in an individual's genetic material due to exposure to chemicals, radiation and other environmental agents.

RECENT DEVELOPMENTS

Because genetic discrimination was specifically excluded from the Americans with Disabilities Act, a spate of state and federal bills has been introduced that would prohibit using the results of genetic testing, particularly genetic screening, in employment decisions.

In March, Wisconsin Gov. Tommy Thompson (R) signed the first genetic testing law in the country. The new law, which went into effect March 20, bars public and private employers in Wisconsin from making genetic screening a condition of employment, using information gathered from genetic screening in employment decisions or offering employees additional pay or benefits to undergo genetic screening. Genetic monitoring is allowed when authorized by the employee, for use in workers' compensation investigations and in order to determine exposure to potential workplace toxins. But, it cannot be used to terminate the employee or "adversely affect" the terms, conditions or privileges of employment. A bill with similar language was signed in Iowa and another is pending in Rhode Island.

In Congress, the Human Genome Privacy Act (H.R. 2045) has been introduced by Rep. John Conyers, D-Mich., to "safeguard individual privacy of genetic information" from misuse by federal agencies and contractors. The bill does not address employment specifically but does create civil and criminal penalties for the unauthorized disclosure of genetic information.

FUTURE OUTLOOK

Although both genetic screening and genetic monitoring face potential abuse in the workplace, scientists, ethicists, policy makers and the media have devoted most of their attention to the problems posed by genetic screening. Genetic monitoring, however, may turn out to be the more relevant testing practice for employers.

Arguing that genetic monitoring, if done within certain parameters, could make possible the prevention or early detection of occupational disease, the American Medical Association has come out in support of monitoring when four conditions are met: the disease develops rapidly and is irreversible, the employee has given informed consent for monitoring, the testing is highly accurate, and any detected genetic abnormality results in an unusually high susceptibility to the disease. This position does not, however, address an employer's options in acting on the results of genetic monitoring, and this issue will likely be left to the courts, the legislatures and collective-bargaining agreements.

One of the most controversial but as yet unresolved areas for genetic testing is health insurance. The genetic testing literature is rife with stories of individuals who have been denied coverage on the basis of risks detected by genetic screenings. The problem is expected to grow as the ability to test for genetic susceptibility grows, and some analysts have argued that genetic discrimination by insurers could ultimately force national health insurance by creating a class of "genetic uninsurables." (The Wisconsin law originally contained restrictions on genetic testing for insurance purposes, but these were later dropped, reportedly under pressure from the insurance industry.)

By 1994, panels sponsored by the National Institutes of Health are to have completed recommendations for preventing the legal and ethical abuse of genetic information. In the meantime, advances in the laboratory will likely continue to spur action in the legislature, and employers should keep an eye on developments in their statehouses.