Last Thursday, Congress unanimously passed the Genetic Information Nondiscrimination Act. This new law protects the information received when someone undergoes a genetic screening test.
These tests, which are extremely common and can easily be found over the Internet, have been used to deny people health insurance coverage. Genetic test results have also caused some people to be unfairly discriminated against in the workplace, with employers denying benefits and sometimes even promotions to people with predispositions to fatal genetic disorders.
Clearly, it is past time the government has stepped in to stop genetic discrimination, yet there is another problem concerning genetic testing the government needs to deal with: The regulation, or rather lack thereof, of the genetic testing business.
Currently, there are several genetic testing companies that can be found on the Internet. While genetic testing may be paving the way to a more personalized form of medicine, the industry does have a few inherent drawbacks. Some of these companies, such as DNA Direct and Genelex, are willing to send the test kit and subsequent results directly to consumers, without the presence of doctors to help interpret the outcome.
While people do have a right to know their own test results, doctors should be present to help them clarify what the results mean and oversee any medication changes a person decides on to prevent them from inadvertently endangering themselves.
The heads of the companies DNA Direct and Genelex, however, believe each person should have the right to control their genetic testing information. The medical industry, they argue, may not be able to keep fully confidential the genetic test results of patients. As such, genetic testing should be controlled by individuals, not by doctors.
The problem with this, though, is that many people may have a hard time interpreting the results and could potentially bring about more harm than good to themselves.
The majority of people who have taken genetic tests have, in some way, altered the amount or type of medication they take. While this may be a good idea for some, it could prove disastrous in the long run for others, and the likelihood that it causes harmful effects to a person is heightened if the person changes their medication intake without first consulting a doctor. Therefore, it makes sense that these genetic tests should only be taken under the careful watch of a medical professional.
Another issue with many of these genetic testing businesses is the several misleading claims the companies make.
These testing groups promise they can help people choose drugs that fit their individual genetic identity. However, several studies have been conducted and have shown only a few genes can actually alter the effectiveness of drug therapies. Even fewer studies have actually shown that care tailored to a person's genetic identity actually improves results. So how can these companies promise they can better a person's treatment through genetic testing when only a relatively small number have actually benefited? The answer is simple: The government has made little effort thus far to regulate the genetic testing industry. Without any regulation, these groups can make all the misleading claims they want.
Much of the genetic testing industry was exposed earlier this month when several analysts from the Genetics and Public Policy Center at Johns Hopkins University wrote an article published in the scientific and medical research journal Science. They recommend the government create a federal registry for genetic test results and that the Federal Trade Commission step in and crack down on the many misleading claims these commercialized genetic tests make.
Also, the FDA needs to do a complete review of several lab-developed tests to
ensure their safety and reliability.
By placing stricter regulations on the genetic testing market, we can guarantee that the results of these tests are kept confidential and will no longer provide misleading claims and bring about danger to those who choose to undergo these tests.
Ryan Dashek is a sophomore majoring in biology. Please send responses to opinion@dailycardinal.com.
