President should sign bill outlawing genetic discrimination
On May 1, Congress did something admirable. It passed the first civil rights law of the 21st century: the Genetic Information Nondiscrimination Act.
The bill, which President Bush is expected to sign soon, will prohibit employers and insurance companies from engaging in discrimination based on genetic testing.
As someone who is legally blind and encounters disability-related bias, I applaud this legislation.
According to the U.S. Census Bureau there are 54 million Americans with disabilities. Many of us are denied jobs or health insurance because of our disabilities.
Until fairly recently, most able-bodied people have not worried that they, too, might run up against such bias. But with the mapping of the human genome in 2003, and as more genetic tests have been developed to determine hereditary predispositions to various diseases such as cancer and diabetes, many people now understand the potential for discrimination that this information brings.
From the 1960s until 1993, the Lawrence Berkeley National Laboratory in California secretly tested its workers to see if they had the genetic trait for sickle cell anemia, reports the Associated Press. Some insurance companies in the 1970s denied coverage to African-Americans, who carried the sickle cell anemia gene, according to the AP.
In 2002, Burlington Northern and Santa Fe Railway Co. paid a $2.2 million settlement to 36 employees, the AP reported. The workers sued the company, alleging that the business tried to covertly conduct genetic tests on them. The company denied the charges.
Many people refuse to take genetic tests because they fear being denied employment or being fired from a job or told that they can’t get health insurance. But by declining this testing, they could be forgoing treatment that could prolong or save their lives.
You can understand their hesitation, however. We all have genetic markers that predispose us for one disease or another, as the Human Genome Project has made clear.
Though former President Clinton issued an executive order banning genetic discrimination in the federal government, there is no federal law banning such discrimination.
Many states have filled part of the gap, with 41 banning genetic discrimination in health insurance and 31 prohibiting workplace discrimination based on genetic testing, according to the National Human Genome Research Project.
But people shouldn’t have to move from state to state just so they won’t get discriminated against because of their genetic makeup.
I urge President Bush to keep his pledge to sign GINA and for the government to fully implement and enforce this landmark law.
Kathi Wolfe is a writer and poet. Her chapbook "Helen Takes the Stage: The Helen Keller Poems" was published this spring by Pudding House Press. She can be reached at pmproj [at] progressive [dot] org.
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