The Lamp

Where truth can be shared.

GINA Would Protect Patients’ Rights

Posted by thelamp on February 26, 2007

Increasingly, genetic history is being used in the diagnosis and treatment of many medical conditions, as well as in research to discover the fundamental genetic mechanisms of major diseases. The prevalence of such sensitive information, however, has raised fears that it will be used discriminatorily when medical or employment decisions are made.

Last week during a congressional hearing, the Health, Employment, Labor and Pensions Subcommittee in the U.S. House of Representative, lawmakers were asked to consider a legislation that would prevent this from happening. If passed, the Genetics Information Non-Discrimination Act (GINA) would also prevent health plans from denying coverage or charging higher premiums using those same genetic tea leaves.

A person’s genetic profile is as natural and inseparable from who they are as any other physical trait or attribute. Consequently, it should be treated the same as other innate human characteristics, including one’s race or gender.

Genetic data or tests results are valuable tools used in health diagnosis and treatments. One practical reason genetic information should be controlled is that, in many instances, test results only suggest a risk of developing a disease. Surely employees should not lose their health insurance or their livelihood because they have a statistical chance of developing a medical disorder.

CMC agrees that such information can be – and should be – used to positive ends: enabling preventive lifestyle changes or tailoring medical regimes to reduce patients’ chances of developing any disease their genes might incline them toward. Some restrictions, however, should be put in place on how that information should be used.

Simply stated, a family history of diabetes should not be the reason a person is turned down for a job or health insurance. Likewise, no one should be fired for refusing to take a genetic test that could reveal a biological inclination toward such a condition. Given that the science of genotyping is still in its infancy, now is the ideal time to establish parameters.

Consider that genetic tests are now available for almost 1,000 diseases and hundreds more are under development. Personal genetic data is becoming more commonplace. The danger of not safeguarding information raises the potential for a person with a genetic predisposition toward one or more diseases to be denied healthcare insurance, lose their job or be denied employment altogether.

The proposed GINA legislation, co-sponsored by Reps. Louise Slaughter, D-N.Y., and Judy Biggert, R-Ill., would be limited to cases where an employer intentionally seeks out genetic information about a worker and misuses that information. The bill even carves out a so-called “water-cooler” exception to protect employers from liability under the law if they come across the sensitive data inadvertently.

Delaying a law that ensures patient privacy in genetic testing would also have a negative impact on the advancement of personalized medicine. If patients are too fretful about how their genetic information might be used, they’re bound to be less likely to submit to testing. Yet, if they don’t take part in clinical trials to test genetic-based therapies, they won’t be able to reap the benefits of the promising technology.

During last week’s hearing, legislators learned that typical Americans are quite reluctant to lend their genetic fingerprints to the birth of treatments that could potentially save lives. A doctor giving testimony referenced a recent poll, which showed 66 percent of people surveyed had concerns about how their genetic information would be used, and 85 percent thought companies would misuse the data without a law prohibiting discrimination.

The subcommittee also heard David Escher’s personal experience. Escher, a former railroad employee, testified that after undergoing multiple medical tests, he was diagnosed with carpal tunnel syndrome. Although his condition was determined to be work-related, Escher’s employer required him to have further testing. He later discovered the company had performed genetic tests on several vials of his blood without his knowledge or consent, presumably to show his condition was genetic-based and unrelated to his job.

Clearly, prohibitions against such use of genetic information are in order. Still, the broad benefits that could be realized through developing genetic testing warrant carefully designed guidelines. For example, a simple genetic test can now determine whether a cutting-edge but costly breast-cancer drug will work for a certain patient based on the patient’s genetic profile.

Technical advances must be balanced with ethics. Toward that end, CMC supports GINA as necessary prevention against misuse or abuse of genetic information.



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