Why Genetic Testing Is Scary, Complicated, and Totally Worth It

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If you could get a report card for your genetic makeup, detailing all its strengths as well as its weaknesses, would you?

Thanks to services like 23andMe, a company that offers personalized genetic testing services, anyone can get an in-depth look inside their personal health and ancestry delivered straight from the lab to your inbox (well, anyone with $99 to spare). And that’s great — but it’s also caused its fair share of adrenaline surges and panic attacks. The results from genetic testing can be intimidating; They don’t sugarcoat anything and may reveal risk factors for serious illnesses such as heart disease, cancer, Parkinson’s, and Alzheimer’s.

Scary as this information may be, I decided to take the plunge. I took 23andMe’s genetic health test last summer. (Note: The FDA has since requested that the company stop the marketing and sales of its health-related genetic testing services). The results were at times confusing and in need of clarification by a healthcare professional, but I feel strongly that the wealth of information I received has been hugely beneficial. Armed with a general idea of what health risks I can anticipate, I can discuss this information with a professional and change my lifestyle if necessary. For all the criticisms leveraged against genetic testing services, my experience suggests they can be an empowering tool that can help people take charge of their own health.

What’s the Deal?

Direct-to-consumer genetic testing products like 23andMe have grown in popularity, and with that growth has come increased scrutiny from both the government and consumers. Late last year, 23andMe (which is backed by Google) was told to halt marketing and sales of their health-related genetic testing services —specifically the 23andMe Saliva Collection Kits and Personal Genome Service (PGS), which each retail for $99. A stern warning letter from the Food and Drug Administration accused 23andMe of illegally marketing itself as a service that diagnoses diseases, which the FDA says the company has yet to prove (The company can still market and sell ancestry-related genetic testing services.).

Luckily for the purposes of this article, I was able to obtain my health reports prior to the November 22 cut-off date. At the time, 23andMe provided customers with DNA spit kits, which users, well, spit into, before mailing back to the company for evaluation. The company’s lab technicians then analyzed the spit (using “robust quality assurance protocols,” according to their website) and provided consumers with personal data about specific diseases and other health problems they may be at risk of developing, such as certain cancers, coronary heart disease, responses to certain drugs, and potentially inherited conditions. The kits were sold directly to consumers without involving health care professionals.

Largely because of this direct-to-consumer structure, critics of 23andMe’s health results service argue that it did more harm than good. Some maintain that delivering data based on limited processing (23andMe only tests specific aspects of users’ DNA) doesn’t tell the full story and may give consumers incomplete information, which they may then use to make (potentially drastic) decisions and assumptions about their health. This is of particular concern given that the data is not interpreted through a health care provider.

But in my experience, the results from 23andMe can also be a positive catalyst for helping individuals understand their genetic health and start conversations with their health care providers about more comprehensive testing, and how to develop a healthier lifestyle in general.

Putting My Health to the Test

For me, spitting into the plastic container and sending my saliva to 23andMe was the easiest part of the process. It’s when I got the email saying my results were ready that I immediately felt nervous, wondering what the results would tell me and fretting over how they might affect my health and the health of my future family.

A combination of anxiety and lack of patience on my part meant that I opened up the results about two seconds after they arrived. To my relief, nothing was scary, and nothing dramatic happened; I just got to learn more about myself and all the pieces that make up my genetic health. I felt more relieved than I thought I would just from knowing what influences were acting on my body, never mind the actual results.

I did not look at the results as medical diagnoses (which they are not), but I found value in receiving an overarching view of my genetic health. I already live a healthy lifestyle (I have my days, of course); if anything, the tests encouraged me to keep being active and eating a healthy diet. If there are pieces of it that raise a red flag for me, I know that I (or any other consumer) have the power to consult a healthcare professional or genetic testing counselor.

The explanations and information provided about each test and the testing process can be complicated and hard to understand, but that’s likely a result of the complexity of genetic testing itself. I would encourage all who choose to take a genetic health test to read the information provided carefully, and seek help for further understanding if needed.

The Takeaway

Clearly it’s important that these services meet the quality standards set by the FDA and other regulatory organizations in order to ensure the overall quality of the products we’re sold and the information we’re given. Above all else, 23andMe needs to prove to the FDA and its consumers that its tests are valid and accurate. The company already claims to prioritize this: Co-founder Anne Wojcicki states in a blog post on 23andMe’s site that the company stands behind its data and emphasized that its lab is compliant with requirements laid out in the Clinical Laboratory Improvement Amendments of 1988, an amendment passed by Congress to “ensure the accuracy, reliability, and timeliness of patient test results regardless of where the test was performed.”

As companies tweak the execution and marketing of these services, we should be careful not to throw the baby out with the bathwater. Affordable, personalized genetic health information, whether or not it qualifies as a health diagnosis, is a great jumping-off point for people to become more invested in their health and potentially make changes that could better their quality and longevity of life.

Would you take a test to learn more about your genetic health information? Share in the comments below, or get in touch with us on Twitter!