“The scientific literature that [these tests are based on] is limited and not of much use for complex common diseases, including arthritis,” explains Moore. “They look at one individual genetic variant, instead of looking at interactions between multiple genetic variants and other factors, like environment, which we believe have a far more significant impact on disease risk.” 

Moore had his own genetic material examined by 23andMe for the paper, and found the results gave him no more information than he could have gleaned from his family history. 

If I had gone to see a medical geneticist, rather than doing a direct-to-consumer test, he or she would almost certainly not have recommended screening for RA or any other autoimmune disease says Clair A. Francomano, MD, director of adult genetics at the Harvey Institute for Human Genetics at the Greater Baltimore Medical Center. “A trained geneticist would take a very thorough family history and medical history, and based on that information, may recommend testing for one – or at most, a few – specific genetic variations for diseases that we might actually be able to make pharmaceutical, surgical or lifestyle recommendations for, like breast cancer or Parkinson’s disease. RA and most autoimmune diseases don’t fall in that category,” she explains.

The Good News

There are a few upsides to direct-to-consumer genetic testing: consumers who discover that they have an elevated risk for one of the handful of “actionable” health problems – such as type 2 diabetes, obesity and certain types of cancer – may be prompted to make healthy changes, such as quitting smoking, eating less and exercising more in order to reduce their odds of disease. 

In addition, “Tests like 23andMe have made genetics less scary,” points out Gregersen. “Even four years ago, medical data panels were saying that genetic testing was risky for consumers, that insurance companies would use this information to deny people health insurance. Now, [experts and consumers] are more comfortable with it, because tests like 23andMe have made genetic testing more mainstream.”

Clearly, genes matter, which is why research institutes like NARAC exist. “We continue to conduct research because we think that genetic information may eventually help us understand what goes wrong in the bodies of people with arthritis,” says Gregersen. “And that will improve treatment, because we’ll know which genes make a person more or less receptive to specific medications and therapies.”

While every expert I spoke with for this story expressed excitement over the future of genetic research, not a single one said he or she would recommend direct-to-consumer testing for patients or family members. “You’d be better off getting a comprehensive family history – that is, going back at least two generations to find out which health problems your immediate members suffered from, and sharing that with your physician,” says Dr. Eng.

As for me, I found my genetic profile test results fascinating – but in hindsight, Gregersen summed it up best: “Direct-to-consumer tests are fun and interesting – but unfortunately, from a medical perspective, they’re not useful.”

Genes Associated With RA

The consumer genetic test offered by 23 and me looks at six genes and genetic regions that have been shown, in scientific research, to increase a person’s risk for rheumatoid arthritis. Most are involved with how the immune system works.

Two examples of genes included in the test include the HLA region and a gene called PTPN22.