On Wednesday, May 21, 2008, President Bush signed the Genetic Information Nondiscrimination Act (GINA). GINA prohibits employers and health insurers from discriminating against persons on the basis of their genetic information. The measure passed by a vote of 414-1 in the House and 95-0 in the Senate before making its way to the President’s desk.
The almost-unanimous Congressional support is indicative of the public support—or public fear—behind the measure. A 2007 survey indicated that 93 percent of Americans oppose employer or insurer access to their genetic test results. Another survey indicated that 92 percent fear harmful use of their genetic test results by employers or insurers. GINA is an attempt to put such public fear to rest.
The Ethical Concerns Surrounding Genetic Testing
Genetic testing is currently available for 1200 diseases, and tests for hundreds of others are currently being developed. But as with other areas of biotechnological success, ethical issues have arisen with the advancement of genetic testing. For example, can health insurance companies use the results of genetic testing in granting or denying coverage? Or can employers screen the genetic information of potential employees before making hiring or promotion decisions?
Denying health insurance coverage on the basis of genetic disease is not new. In the 1970s, some insurance companies denied coverage or charged higher premiums to African Americans who carried the sickle cell anemia gene. More recently, young children have been denied health insurance because they carried a recessive genetic disease. In another example, a newborn was denied coverage after a prenatal genetic test indicated that the baby would be born with a genetic disorder. On the employment front, workers for Burlington Northern Sante Fe Railroad were tested for genetic predisposition to carpel tunnel syndrome.
State prohibitions of such genetic discrimination vary. Forty states and the District of Columbia prohibit discrimination in health insurance policies based upon genetic testing, but the extent of the protection differs. For example, only seven states specifically prohibit health insurers from requiring testing, while other states allow health insurers to consider the results of genetic testing only if the patients voluntarily submit favorable test results. On the other hand, 14 states encourage genetic testing or allow discrimination in certain types of insurance policies. Seven states have no provisions prohibiting insurance discrimination on the basis of genetic testing results.
Genetic discrimination and the patchwork of state laws have prompted concerned Americans to call for more uniform regulation of genetic testing, and many analysts believe that GINA is the answer.
The Potential Impact of GINA
Some analysts believe that the passage of GINA ensures that Americans no longer have to choose between genetic privacy and good medical care. Patients can proceed with genetic testing without fearing that the results can be used against them in the healthcare or employment setting.
It is also believed that GINA will help ensure the progress of genetic testing and research. Scientists have reported a difficulty in engaging large numbers of patients in genetic studies because patients fear that the information obtained may be used against them by an insurer or an employer. Analysts have seen this effect as an impediment to genetic research and clinical practice. Under GINA, it is proposed, researchers can affirm their patients that their genetic information is protected against misuse.
Thus, it is believed that the passage of GINA will help the progression of “personalized medicine,” where patients are treated according to their specific genetic make-up.
Whether GINA will properly address these concerns and open up a new realm of healing remains to be seen. But for now, the President—and a unified Congress—is banking upon it.