I inserted the Q-Tip into my vagina, as far as I could stand it, per the instructions I’d gotten in the mail. I twirled it around in there for exactly 60 seconds, swished it into a sample vial, then popped the tube into a USPS mailbox on my way to work, feeling weirdly attached to this sample of my bodily fluids that I was handing casually over to the postal service. There she goes, I thought.
When I administered my own vaginal culture in September of 2018, I was worried about how uBiome, the maker of the DIY “SmartJane microbiome screening test” would use my personal data. I never thought the data extracted from my vagina would end up in the hands of the Federal Bureau of Investigation.
Late last month, the FBI raided the uBiome offices in San Francisco as part of an investigation into its insurance billing practices, sources told the Wall Street Journal. “Employees were asked to hand over their computers after federal agents broke down the door,” according to CNBC.
Monday, uBiome emailed its customers and confirmed the investigation, informing them that all pending SmartGut (its gut microbiome test kit) and SmartJane requests or orders have been canceled: "On Friday, April 26, 2019, federal authorities, pursuant to a search warrant, searched uBiome’s facilities in San Francisco. We are cooperating fully with federal authorities on this matter," the company said.
“If you would prefer that any of your pending samples be destroyed, simply reply to this email,” it added. “Our team will ensure this is taken care of for you expeditiously.”
When I asked the FBI for comment, specifically about what was searched and removed from the office, the agency's San Francisco office sent me this statement:
“Special Agents from the FBI San Francisco Division were present at 360 Langton Street in San Francisco conducting court-authorized law enforcement activity. Due to the ongoing nature of the investigation, I cannot provide any additional details at this time."
uBiome did not respond to a request for comment.
Considering this is an investigation into insurance malpractice, I don’t actually know whether the FBI actually left the uBiome offices with vials of bodily fluids. But it could have. It’s not a stretch to assume that it could have its hands on the data extracted from those samples via the employee computers it seized. The news was a powerful personal reminder that consumers generally have little idea what happens to the data (and actual samples) that they mail to companies like uBiome, 23andMe, or Ancestry.com
The SmartJane was marketed as “the first women’s health screening test to simultaneously check multiple conditions—including HPV, STIs and other vaginal factors—all from one sample,” using “patented precision sequencing™ technology, as well as our proprietary algorithms,” according to uBiome’s website. I took the test as a journalistic experiment, because I was skeptical about the usefulness of the results and concerned about the data privacy implications associated with taking these sorts of tests.
“We have no idea what the data means… this snapshot tells you nothing"
The FBI raid came at a time when an increasing number of at-home genome sequencing tests are being used by law enforcement and the FBI to solve crimes. But what data law enforcement can access reaches far beyond the individual criminals, to family members and across generations.
My vaginal culture isn’t the only bit of highly personal data that uBiome, and now the FBI, has on me. Before I even received the kit or took the test at home, I had to fill out a questionnaire about my personal and medical sexual health to determine whether I actually needed to take the test. I answered questions about my sexual preferences, number of sexual partners, menstrual cycles, and birth control methods.
This would all be highly valuable data in a matrix of data points about people within my demographic if uBiome chose to sell that information to, say, a data broker who then sold it to advertisers.
The company’s terms of service say that uBiome collects and stores registration information, self-reported information, and microbiome information—and all of that is subject to be part of uBiome’s research and development activities, which includes “improving our Services and/or offering new products or services to you; performing quality control activities; conducting data analysis that may lead to and/or include commercialization with a third party.”
In exchange for handing uBiome all of my personal data about my health and sex life, plus one long culture swab, I received an extensive and detailed report a few weeks later. It listed the prevalence of dozens of bacteria and organisms I’d never heard of: Sneathia, Fusobacterium nucleatum, Treponema pallidum, Porphyromonas, on and on. The entire report was nine pages long and, because these terms were unfamiliar and unexplained, largely unhelpful. I had to do a lot of Google searches on my own, which of course led to some scary WebMD and Yahoo! Answers results.
Jennifer Gunter, a gynecologist and the author of the upcoming book The Vagina Bible, told me in an email that these tests are basically useless, and she doesn’t recommend taking one.
“We have no idea what the data means. We know the vaginal microbiome changes throughout the day as well as day to day, and so this snapshot tells you nothing,” she said. “To suggest otherwise is disingenuous on the part of the company.”
Regardless, the FBI now potentially has my data. While I initially had no idea how uBiome would use my data, I know even less about how or if the FBI would use it. Once I threw my sample into the mailbox, it was out of my control.
I went into my SmartJane test feeling mostly pessimistic about data privacy and DIY health. But parts of me were optimistic about how home testing—especially if it could replace something as frequently invasive and potentially trauma-inducing as visiting the gynecologist—could open up new options for people who don’t have access to or feel uncomfortable with routine checkups. I thought it could be particularly useful for those in rural areas or people facing accessibility obstacles. Taking my own culture at home was weird and uncomfortable, but a lot less stressful than going to the gynecologist’s office and hopping into the stirrups.
These kits aren’t meant to replace regular pap tests, but there’s an idealistic version of uBiome and other startups like it where, similar to companies that offer home delivery birth control, they fill a need for women who can’t wait for the healthcare system to become less terrible. But even loosely regulated at-home prescription startups are cutting corners and operating shadily under pressure to grow fast: San Fransisco startup Nurx, the "Uber for birth control," has been criticized for improper storage practices, and of course controversial blood testing company Theranos serves as an infamous reminder that rapid innovation doesn't always mean responsible use of patients' health data.
An optimistic vision of what DIY at-home testing kits could be has obviously not come true yet. I obviously had no way of knowing that the FBI would ultimately raid uBiome and seize equipment from the company. But as more companies try to fill the healthcare space with DIY testing, they’ll need to become better stewards of our personal data.