Genetic Non-Discrimination Act
US Government to Make Individual’s DNA Test Results Private
Many US citizens fear the use of genetic tests to investigate medical conditions. GINA will prevent the use of results by employers and insurers.
The completion of the Human Genome project enabled scientists to identify the genetic pieces that contribute to a variety of chronic health conditions. Most Americans are reluctant to use genetic testing and many of those refuse the tests even when covered by insurance because of fears that the results might be used to deny health care coverage or even employment. The US government has contemplated the Genetic Information Non-Discrimination Act (GINA) since 1995, but made notable progress between its formal introduction to the House of Representatives in January of 2007 and its passing May 1st of 2008.
Genetic Testing Fears
There are nearly 16,000 recognized genetic disorders known to affect 13 million Americans. Progress in genetic research has provided doctors with a variety of genetic tests that can assist in both diagnosis and preventative care. Conditions including macular degeneration, cancer and diabetes are becoming easier to test for and treat early because of progress in understanding genetics. Though carrying the genetic mutation or specific gene does not guarantee that patients will develop the disorder, it is useful to know it exists when determining specific, individualized care.
Recent surveys reveal the attitude Americans in general have towards genetic testing. It is not the knowledge of what might be wrong, but the fear of what might be done with the information. For example, a study published in 2005 showed that 40 percent of over 86,000 adults would not participate in genetic tests because health insurance agencies might deny them coverage based on the results. A similar survey in 2004 revealed 92 percent of respondents would not want their employer to have access to genetic test results and 80 percent felt it should not be available to their health insurance provider.
This fear is not confined to the general public; health providers are also leery about genetic results being used for discriminatory practices. A recent study of cancer genetic specialists revealed that 68 percent will not bill the insurance company for genetic tests and 26 percent use an alias for the patient, both out of fear that the insurance company will use the results to deny future coverage.
What GINA Will Do
GINA's impact will be felt in the primary areas of current public anxiety; access by employers and health insurers. Patients and doctors will be free from anxiety of possible discrimination and use the available genetic tests to determine diagnosis and pre-disposition. As stated by Senator Gregg, it is being viewed as “the first major civil rights act of the 21st century."
This will also provide the opportunity for genetic understanding to progress further. More people will be inclined to participate in clinical tests without fear of repercussions based on the results. Doctors and researchers will be better able to tailor treatments for individual patients and improve overall quality of life for millions.
Reference:
National Human Genome Research Institute
