Throughout human history, we have struggled to better understand our bodies and their limitations, our health and our illnesses. Much has been achieved in the field of medical science, but nothing in our past can compare to the recent unlocking of the genetic code.
With the 2003 mapping of the human genome, the 21st century opened with untold possibility for the prevention, diagnosis, treatment and ultimate cure of disease.
Today a simple blood test allows individuals to dream of longer, healthier lives. Collectively, the information gathered might free humanity from diseases we’ve suffered throughout history.
But the same blood test also presents the risk of misuse of genetic information by health insurers or discriminatory employers, a risk against which private individuals have very little protection.
As a result, the fear of losing health insurance or employment has prevented many from submitting to vital genetic tests. Rather than move forward with the new knowledge this research can provide, all of society is held back by well-placed fear.
In fact, many Americans avoid physician-recommended DNA testing, for fear that finding and recording a genetic predisposition for disease would lead to genetic discrimination.
Cannot wait
After 12 long years, the Genetic Information Nondiscrimination Act HR 493 (“GINA”) passed recently in Congress.
President Bush has expressed his support for legislation to prevent genetic discrimination, and he should sign this bill as quickly as possible. Americans cannot wait any longer.
Examples of abuses abound, such as the case involving Burlington Northern Santa Fe Railroad Company. Burlington conducted genetic tests without the knowledge or consent of its workers to garner information about their propensity to develop carpal tunnel injuries.
Although there is no clear genetic mutation linked to carpal tunnel conditions, Burlington used genetic information to deny their employees’ worker compensation claims.
The Equal Opportunity Commission sued Burlington for this secret testing. While Burlington ultimately acknowledged that it should not have conducted these tests, the case was settled out of court in 2002.
This case and others like it have heightened the fear of the consequences of genetic testing.
Discrimination is an even greater risk for members of ethnic groups associated with specific genetic variations. Americans of European descent may find they carry the risk of celiac disease or cystic fibrosis.
African Americans might discover they carry the gene for sickle cell anemia or thalassemia. Jewish Americans from Eastern European backgrounds might find they carry the risk of Tay-Sachs or nonsyndromatic hearing loss.
The Health Insurance Portability and Accountability Act of 1996 bars the use of genetic information in denying or limiting health insurance, but only for members of a group plan, not for those covered by individual health insurance plans. Nor does it provide employment protection against the misuse of genetic information.
GINA will protect Americans from the misuse of genetic information in employment and health insurance decisions. It prohibits insurance providers from raising premiums, restricting enrollment or varying the terms of coverage, based on an individual’s genetic information.
In addition, it prohibits employers, employment agencies and labor organizations from discriminating in employment practices on the basis of genetic information.
As scientists grapple with the brave new world of the mapped human genome, it is imperative that protective laws keep pace with science.
Nancy Falchuk is national president of Hadassah: The Women’s Zionist Organization of America.
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