Blog - Is Ignorance Bliss?

“Coughing? Check... Fatigue? Definitely. Migraines? Check!"

Thanks to certain websites that allow hypochondriacs, such as myself, to explore their curiosities by matching symptoms to specific diseases, the Internet and modern-day technology have encouraged individual obsession to be as precautious as possible when it comes to their health. Hopefully, most are aware that diagnosing a disease takes much more than simply checking off a list of symptoms searched on Google. However, in today’s society, this obsession with remaining “in-the-know” when it comes to our health has extended beyond the simple Google or WebMD searches and into the realm of genetic testing. Genetic testing is the testing of one’s genetic makeup to determine not only ancestry, but also whether a person is susceptible to particular diseases.

Does the virtual instant gratification of knowing something about your personal genetic make-up, via at-home testing, outweigh the risks associated with bypassing health care providers? What is the value of physicians and genetic counselors more accurate test results, stronger privacy protections, and most importantly, counseling about appropriate treatments and diagnoses?

Direct-to-consumer (DTC) genetic testing is marketed directly to consumers and serves as an at-home method of obtaining information about a person’s genetic makeup. Until recently, genetic testing was only available from health care providers who are trained to order the appropriate tests, collect data from the patient, interpret the results, and, most importantly, counsel the patient on subsequent steps. DTC tests, however, provide a low-cost means for individuals to learn about their ancestral history and gain insight about particular genetic diseases they may be at risk for. Although the DTC test results can serve as a means of taking preventive steps in one’s personal health, there also is a risk of losing control over your genetic information.

The problem lies not only in the reliability of these tests, but also in the impact any test results have on the user. Oftentimes DTC results may be misunderstood or inaccurate, and absent correct interpretation may lead individuals to alter current medical treatments or prescription usage.

With genetic testing becoming widely available, it is important that the privacy issues are addressed. What happens if the government were to demand access to DTC genetic testing companies’ information? What if such access served the greater common good, such as for the protection of national security, public safety, or public health? Or how would privacy be protected from third parties? Could genetic data be sold on the market like other personal information?

Current law does not adequately address third party access to genetic test results, as it only prohibits employers and insurers from denying coverage to healthy individuals based on genetic predisposition. [i] At what point do we have a right to control our own health information? Due to the private information that is held by test providers, DTC tests should be considered medical devices, which deserve a heightened level of privacy regulation. Under the new health reform law[ii] the Department of Health and Human Services (HHS) is making improvement of health information technology a priority. Hopefully, Congress and HHS also will make certain that providing privacy protection for consumers who seek DTC genetic testing becomes part of the mix.

In many cases, genetic testing provides information only about a predisposition to developing certain diseases. Often no medical intervention will be appropriate until if and when the disease to which one is predisposed is manifested.  Our culture emphasizes the need to know and to know “now,” however, the disadvantages of DTC genetic testing, suggests that this may be one instance where ignorance is bliss.

To read more on this topic, click here for a Science Progress article, and here for a Spokesman-Review article.

For the full text of the Genetic Information Non-Discrimination Act of 2008, click here