What if you could take a simple test to find out if you were carrying the gene for cancer, diabetes or Tay-Sachs disease? What if you could take that test in the privacy of your own home by simply swabbing the inside of your cheek? Would you do it? Thousands of people all around the country are doing just that. Online genetic testing has grown in popularity over the past few years. But what are the drawbacks of online genetic testing? Are they reliable? Can online genetic testing really be private?
Genes and Genetic Testing
Genes are the basic building blocks of human beings. Genes contain the code, also called DNA that determines all our traits. Each person, with the exception of identical twins, has a unique combination of genes. It is this unique combination of genes that creates the different traits in a person.
Through research on genes and diseases, scientists now believe that all human disease is the result of mutations that occur within our genes. Sometimes these mutations are caused by environmental factors such as exposure to chemicals. Sometimes mutations happen spontaneously and for unknown reasons. Sometimes we have mutations to our genes at birth.
Scientific discoveries about human genes have led to the development of genetic testing, also called DNA testing. Genetic testing is used to examine genes for mutations that cause specific diseases. Scientists have discovered and identified the mutations that cause over 1,400 human diseases.
Like almost everything in the 21st century, genetic testing has become more convenient, easier and streamlined. Consumers can now buy at home genetic testing kits for everything from paternity to testing for your predisposition to diabetes, breast cancer or Alzheimer’s. These tests are relatively inexpensive.
What is an Online Genetic Test?
An online genetic test is similar to a genetic test that you would take at your doctor’s office. The main difference is that you take the sample yourself in your own home and then mail the sample to a laboratory. The online genetic testing company then reports the results back to you.
How Do You Take an Online Genetic Test?
Online genetic testing is a simple process. The testing company sends you a packet of information and testing supplies. These include instructions for taking the test, swabs for collecting DNA samples and foam holders for keeping samples free from contamination after testing. Using a swab, a small amount of tissue is collected from inside your cheek. These samples are then sent to a lab for testing.
Cons of Online Genetic Testing: No Controlled Testing Environment
Since online genetic tests are conducted at home by untrained consumers, there is a real possibility that the DNA sample could become contaminated. The testing environment is less controlled than in a doctor’s office.
Cons of Online Genetic Testing: Lack of Privacy
Privacy is a major issue concerning online genetic testing. Not all online genetic testing companies take privacy seriously. Some companies even share customer information with marketers. Be sure to read the privacy statements on the company website. Some companies say they remove all identifying information from the sample, essentially making it anonymous. However, it is important to note that most online genetic testing companies send samples to an outside laboratory for testing. What does that lab do to guard your privacy?
It is also unclear what happens to the results that are obtained by the online genetic testing company. These companies have the opportunity to make one of the most private aspects of you, your DNA, known in a way you may not want. However, if you have genetic testing through your doctor, your insurance company or HMO would also be receiving your test results. So what’s the difference? There are privacy and sample usage restrictions through HIPAA that your doctor must follow. These don’t apply if you test online.
Cons of Online Genetic Testing: Online Digital Files
Most online genetic testing companies maintain digital files that identify you and your DNA. Some may even hold onto your DNA sample. Some companies post patient results online. If these websites are not secure, your private information may become easily viewable to others.
Cons of Online Genetic Testing: What Happens to Your DNA Sample?
What happens to the DNA sample you provide after online genetic testing is complete? Some online companies state that they destroy samples; others do not state what they do with them. Remember, this is your DNA. Given the reality of cloning and medical research, there is a real concern over what the online genetic testing company is doing with your DNA.
Cons of Online Genetic Testing: Misleading Test Results
Online genetic testing can’t tell you if you will develop a particular disease but it can give you a false sense of security. Results are not always “black and white.” Interpreting and understanding just what the genetic testing reveals can be difficult. Just because genetic testing reveals that you do not carry the mutated gene for a particular disease does not mean that you will not develop the disease. A woman receiving a negative result for the breast cancer gene might choose to skip regular self exams or her yearly physical believing she is immune from the disease. She may then miss opportunities to catch the disease at an early stage when it is most curable. Most diseases are a product of our lifestyle. It’s not as easy as simply having a negative result on a test.
Understanding what the results are actually telling you can be difficult as well. Most people who take an online genetic test do not seek medical counseling to help interpret the results. Laboratories simply report the results and do not make any interpretation of what those results may mean. A negative result for example means that the laboratory found nothing unusual. This could mean that a person doesn’t have a particular disease, doesn’t have an increased risk of developing the disease or isn’t a carrier. More troubling though is that a negative result may also mean that the test missed the specific genetic changes associated with the disease or that there was an error at some point in the testing process.
According to Jamie Ostroff, chief of behavioral science services at Memorial Sloan-Kettering Cancer Center in New York City “genetic information is complex, and there is a risk that providing unfiltered information will result in heightened worry and misinterpretation of results.”
Cons of Online Genetic Testing: You May Be Forced to Reveal Results
Most online genetic testing companies have you sign a legal statement that if requested you must provide all information about results of genetic testing under penalty of law. Who would be requesting such information you may ask? How about health or life insurance companies or even employers.
Cons of Online Genetic Testing: No Federal Regulation
Most home medical use devices must undergo FDA testing and review to “provide a reasonable assurance of their safety and effectiveness.” No online genetic tests have been reviewed by the FDA. The FDA also has not authenticated the accuracy of their claims. In short, there is no guarantee that online genetic testing companies deliver what they advertise. Worse still, since they are not regulated, they may provide inaccurate information to consumers. In the U.S., there is no regulation of online genetic testing companies. Because the actual testing is completed in the laboratories, it is difficult for the FDA to oversee.
Wikipedia: Genetic Testing
Federal Trade Commission