Wednesday, December 11, 2013

Bad research vs. the truths behind the 23andMe stories

By Katherine Borges
Director, International Society of Genetic Genealogy

You'd have to be living in a cave to not know about the media storm that's befallen 23andMe over the past several weeks. With one damning media story cranked out after another, its hard to imagine the old adage about "There's no such thing as bad publicity" proving true for 23andMe. Its like the old game of telephone gone horribly awry. In one example, the FDA desist letter was picked up by Swedish and Finnish media outlets with the claim that the 23andMe test will, "...lead women [to] unnecessarily operates off their chest after notification that they have an increased risk of breast cancer."
Another person asked if lungs were "taken away if there was the risk of lung cancer?"

While parts of the stories may be subject to being "lost in translation" overseas, the situation with how much research journalists are conducting on their stories isn't any better in the U.S. The article, "Would you like to share your DNA code today?" by Barbara Shelly of the Kansas City Star is a prime example. Ms. Shelly reused an Associated Press quote from the attorney for a class action law suit filed against 23andMe last week. But if she had thoroughly researched her story instead of just jumping on the latest witchhunt bandwagon, then she would have been the first to conduct REAL journalism by fleshing out the truth in the stories.

For instance, would Ms. Shelly, or even the Associated Press for that matter, still have used the quote from the plaintiff's attorney if they knew that the plaintiff was the wife of one of her attorney's law firm partners?  Or that the plaintiff ordered her test in September and received her results on November 19, just three days before the FDA letter went public? Or that the plaintiff's husband's law firm specializes in class action law suits? Knowing these facts, how much weight does the attorney's quote carry? How much time did the attorney put into researching 23andMe before making the assertion that their database building is "thinly disguised". Frankly, its not disguised at all, the company has been quite open about building a large database.  Would Ms. Shelly and AP still have used the quote if they knew all of this?

Another aspect that Ms. Shelly took the easy way out on is that she makes the assumption that, "...genetic testing company selling one's DNA code the way an online retailer sells email addresses..." and labeled it "creepy."  If Ms. Shelly had done her homework by either ordering a test herself or interviewing someone who had tested, then she'd know that the people who order the test agree to a consent form that rivals iTunes' consent form. She would have also learned that 23andMe customers knowingly fill out health questionnaires for the purpose of advancing medical research via using large datasets of DNA combined with health information. That is, afterall, why the company was founded. Furthermore, adequate research of 23andMe's website would have also revealed that unlike retailers who sell personal and identifying information, 23andMe's consent form explicitly states no information is shared without a person's consent and the information is aggregated and stripped of identifying info.

Ms. Shelly further demonstrates her ignorance of the genetics field with scaremongering statements like, "What if a potential employer learns someone has a high risk of an expensive disease, such as diabetes?" If she knew anything of the field or once again, had researched the topic before making such an outrageous remark, she would know that thanks to a federal law known as the Genetic Information and Non-Discrimination Act signed into law in 2008, that it would be illegal for an employer to use such genetic information against an employee.

As for the rest of her article, at least Ms. Shelly acknowledges that the medical field is already utilizing personalized genetic information. But then she shows her lack of research skills yet again by not citing the contributions that 23andMe has made. She casts those aside with a flippant, "There is a vast gulf between the quickie commercialized service offered by 23andMe and the groundbreaking medicine practiced by Kingsmore." 

Ms. Shelly, you owe 23andMe an apology and a retraction. In the meantime, perhaps the public can "weed out the bad" reporting and the FDA will soon allow 23andMe's "good work to thrive".