An Op-Ed submission for the Gazette by Councilmember Phil Andrews
Protecting Workers from Genetic Discrimination
No one should have to choose between getting a genetic test that could save his of her life or avoiding a test to save his or her job. That’s why I introduced legislation to protect employees and job applicants in Montgomery County from discrimination based on their genetic makeup.
Montgomery County is one of the world’s leading centers for genetic research and technology – the home of the National Institutes of Health and its Human Genome Project, the Food and Drug Administration, the Shady Grove Life Sciences Center, Celera Genomics, and many other pioneering biotechnology institutions. It is especially important and appropriate that our County be in the forefront of protecting workers from genetic discrimination.
The historic advances in genetic research, testing and treatment taking place in our County offer unparalleled promise for improving human health worldwide. But these advances also offer unprecedented temptations for employers to reduce health care costs by screening out employees who have a genetic marker associated with breast cancer and other illnesses. We need safeguards now.
In a 1997 national poll, 63 percent of those surveyed said they would not take a genetic test if employers or health insurance companies had access to the findings. Internationally prominent biotechnology leaders such as Francis Collins, Director of the National Human Genome Research Institute, and J. Craig Venter, president of Celera in Rockville, strongly advocate laws prohibiting genetic discrimination. They understand the potential for abuse of genetic information, and the devastating effect that would have on public support for genetic research.
The County law follows an executive order President Clinton issued recently to protect federal workers. When the County law takes effect in March, employers in the County generally will not be able to consider an employee’s or applicant’s genetic status. Under strict rules to protect employee privacy, a narrow exception will allow a physician — but not the employer directly— to use genetic information to evaluate a current condition that is preventing an employee from performing the job.
An employee also may volunteer for genetic tests as part of a workplace safety monitoring program, but only if the participation is truly voluntary, the employer receives only aggregate, and thus anonymous, genetic monitoring results, and the employee gets both the individual and aggregate results as soon as they are available.
The law prohibits employers from considering actual or perceived genetic information about an employee’s or applicant’s relatives. An employer who knows or believes that an applicant’s parent had a certain disease might assume – often wrongly – that the applicant would get it.
Genetic markers usually indicate only an increased risk for a disease. For example, a woman with a genetic marker associated with one type of breast cancer has a greater chance of developing the disease, which might justify more frequent check-ups. But the risk is statistical, valid only over a large population, and a particular person with the marker might never develop breast cancer.
Genetic discrimination is a new concept to many people. That’s why the law requires the County’s Human Relations Commission, the agency responsible for enforcing the law, to develop a plan to inform the public and county businesses about the requirements of the new law. The law will accomplish its purpose only if people understand their rights and how to protect them, and if employers understand their responsibilities. The successful implementation of the new law will help protect people from the misuse of genetic information and ensure the continued development of life-saving genetic technology.
With the enactment of the first local law in the country banning genetic discrimination in employment, Montgomery Countians can take renewed pride for being on the leading edge in human rights protection.