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Genetic testing and your rights at work

Friday 13 June 2008

The President signsCongress has just enacted a law to protect persons from having genetic testing – e.g. for sensitivities to certain chemicals which might be found in a particular workplace – from having their employment and other rights infringed.

Those Americans are ahead of us again. But perhaps we can beat them in the Olympics!

The following is from

Read on…

As the story goes, Dr. Francis Crick walked into a pub one night in 1953. "We have discovered the secret of life," he announced. He and Dr. James Watson had just mapped the structure of DNA, in one of the fundamental scientific breakthroughs of the 20th Century. Among many other applications, this discovery opened the door to astonishing advances in medicine.

It would be difficult to argue the profound benefits of these new tools, which have given doctors and scientists the ability to detect, diagnose, treat, and prevent disease before symptoms appear or adverse effects make headway.

At the same time, this progress has raised understandable concerns about the use of genetic information in individually detrimental ways. In the arena of work, the debate has centered on the use of tests for new hires to identify genetic traits and susceptibility to hazardous substances in the workplace.

A 2004 study by the American Management Association showed that nearly 63 percent of U.S. companies require medical testing of current employees or new hires. In addition, 15.1 percent conduct tests for susceptibility to workplace hazards, 3 percent for breast and colon cancer, and 2 percent for sickle-cell anemia; 3.2 percent collect information about family medical history. The American Management Association survey, "2004 Medical Testing Survey," is available through the association's archives page here.

In practice, such tests often forced individuals to make a difficult choice: "Would you take a genetic test if you knew that the information about your genetic makeup would be used against you -- to deny you employment or health coverage?"

Sen. Olympia Snowe (R-Maine) noted the dilemma in essentially those words last year, when she introduced the bipartisan Genetic Information Nondiscrimination Act (also called "GINA"). On May 21, 2008, the President signed the final bill into law.

The long-awaited law, which has been under consideration in Congress for 13 years, was enacted to protect Americans against discrimination based on their genetic information when it comes to health insurance and employment. The history of GINA's passage is outlined on, the National Human Genome Research Institute's government web page.

GINA's passage provides a timely opportunity to consider the intersection of genetics and occupational health, and the challenges that genetic science and medicine pose for occupational health scientists and physicians.

While GINA's passage is intended to be a critical step in preventing discrimination, there are still important reasons for considering genetics in protecting workers from occupational disease. Genetic factors contribute to the variable responses of workers to occupational hazards-particularly chemical hazards and some biological and physical agents.

Although, increasingly, workplace exposures are being controlled to lower concentrations, workers with susceptible genetic profiles may still be at unacceptably high risk. A broad range of published studies show that genetic variations can lead to differential occupational disease risks in exposed workers.

Clearly, genetic technology has been useful in these studies of occupational disease and chemical exposures. The greatest contributions thus far have involved understanding mechanisms and modes of action. Detecting genetic variations can also lead to identifying susceptible subgroups in exposed populations.

This however, raises many questions. If susceptible subgroups are identified, should government agencies use the information, e.g., in risk assessments or in setting standards? For example, how might the Occupational Safety and Health Administration use genetic information when setting standards (to the extent economically and technically feasible) that are intended to assure that “. . . no employee will suffer material impairment of health and functional capacity even if such employee has regular exposure to the hazard dealt with by the standard for the period of his working life.” 29 U.S.C. § 655(b)(5).

No good examples exist in which occupational exposure limits (OELs) have been based on genetic characteristics or risk in a population subgroup. Nor are there examples of one OEL for the general working population and a different one for a specific genetic subgroup.

An important area of continued research involves identifying genetically high-risk groups with exposure to widely prevalent workplace chemicals. Examples include exposure to substances such as benzene, ethylene oxide, polycyclic aromatic hydrocarbons (PAHs), beryllium, and silica. Including genetic information in quantitative risk assessments could be on the horizon in the future.

The inclusion of genetic information in risk assessments does not mean that workers will need genetic tests. Rather, it means that research on genetic characteristics in some workers will be used in modeling risks and determining safe levels of occupational exposure.

As with any new legislation, questions of implementation, administration, interpretation, and compliance are likely to follow.

However, under GINA as enacted by Congress and the President this past month, workers are provided more protection against genetic discrimination. At the same time, the occupational safety and health community will have to add another topic to its basic skill set--understanding the new world of occupational genetics.

At NIOSH, we intend to devote ongoing attention to the challenge of occupational genetics--a challenge that is on the frontiers of science and ethics.

I want to thank Dr. Paul Schulte, Director of the NIOSH Education and Information Division, for his contribution to this month's column and for his ongoing work in the field of occupational genetics. I look forward to revisiting this topic with you in the future.

John Howard, MD
Director, NIOSH

Reprinted from NIOSH eNews, Volume 6 Number 2 June 2008.


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