Meanwhile, insurers are able to require genetic testing, while the insured are not protected from disclosure to employers. In addition, employers who self-insure have unique access to their employees' medical information.
According to a survey reported on by Scientific American of approximately 1,500 healthcare workers in genetics-related fields, 785 patients reported having lost their jobs or insurance because of their genetics. An earlier study revealed 13% of patients surveyed had lost jobs or been rejected in the hiring process because of a genetically indicated condition.
According to a U.S. Congress Office of Technology report from 1992, 55% of commercial insurance carriers did not consider a gene trait to be, in the language of coverage, a preexisting disease. However, 75% of health-maintenance organizations did.
The growing concerns and ambiguity on all sides, accompanied by disjointed language, lean toward a legislative counsel that is, as of yet, nonexistent.
Officially, no federal or state legislation has been passed to protect against genetic-predisposition discrimination. Several bills have been introduced in the last 10 years, and Bill Clinton signed an executive order that prohibits federal departments and agencies from using genetic information when hiring federal employees or classifying existing employees in promotion processes, as well as implementing strong privacy protections.
Nothing similar, however, exists in the private sector. The Americans with Disabilities Act of 1990 protects those with genetic disabilities with viable symptoms but does not include those with unexpressed genetic conditions or detected recessive genes. Title VII of the Civil Rights Act of 1964 does implement protection when genetic disorders can be linked directly to ethnicity or race; such links have been established for only a handful of diseases.
Some genetic testing and record keeping has proven beneficial—even life-saving—in the workplace, and lawmakers are wary of tightened language that might diminish these contributions. The disclosure of information for research purposes is one example. Also, monitoring employees for the effects of exposure to known potentially gene-altering/damaging substances with the intent to use the results for safety enhancement or correction offers an important credit to employers' reined access to information.
For example, the U.S. Department of Energy has used beryllium to produce nuclear materials since the 40s, and many employees have developed acute respiratory disease as a result of contact with the element. Concentration standards were developed and the disease's presence was eliminated, but then chronic beryllium disease was also discovered among employees who had worked for the department within the last 30 years.
Tests on patients revealed that some individuals' immune cells were prone to recognizing beryllium and, due to slight structural differences at the cellular level, initiating the immune response that caused the lung damage. As a result, monitoring of employees at DOE facilities was heightened, and those with the defined immune cells were noted. This genetic record keeping has facilitated improved occupational health programs at the facilities as well as determined employer routes for preventing the lung disease in the future.
In an interview between Council for Responsible Genetics Director Terri Goldberg and labor leader Anthony Mazzocchi, Mazzocchi commented on the potential for the use of genetic information in the workplace:
"I wouldn't question genetic screening as a scientific device. The problem with any screening and surveillance program is that it depends upon who controls it and who administers it. In a perfect world, genetic screening might be a very adequate surveillance measure—it could be used to protect people...You could have the workplace as a marvelous ongoing scientific experiment. If we had such a program, we wouldn't even be discussing whether we should apply genetic screening. It might be something we could institute and have its scientific application discussed by scientists and workers. What is fundamental to the introduction of any new technique is who controls it"
