How 23andMe Sucked Me Into a Clinical Trial

Original article was published by Denise Garratt on Artificial Intelligence on Medium


How 23andMe Sucked Me Into a Clinical Trial

Image by Septimiu Balica from Pixabay

There are no secrets between 23andMe. Yet, the email felt creepy arriving one day after I considered going back on medication.

“Based on a previous survey you completed, there is an opportunity to take part in a research study for ADHD. You may make a difference in the lives of people living with ADHD.”

The thought of helping someone triggered my helper gene into high alert. A super-sized blue-button with a message to learn more pulled me in deeper.

Halfway down the rabbit hole, I prepared to choose between a red or blue pill.

Pres-screening questions would decide my eligibility. One question asked if I ever received a diagnosis of ADHD. The answer was yes, in my forties. It was then I learned women were often diagnosed in adulthood because our symptoms differ from men’s.

They moved me forward based on my answers, and we scheduled an appointment for testing and lab work. I knew the importance of clinical trials, but not as a participant. I imagined a cold, sterile environment.

The receptionist greeted me with a smile and offered me water, followed by a questionnaire to complete while I waited. Glancing around, it looked like a typical doctor’s office.

I met with the study doctor, who answered my questions and assured me I could withdraw from the study. We completed a medical history for relevant family members and me.

After a tablet-based questionnaire followed by verbal questions and answers, the psychologist confirmed my ADHD. Three hours, blood work, and a urine sample later, I headed home.

A week later, I was back in the office and, after careful reading, signed the twenty-two-page consent form.

Future visits included taking vital signs and any combination of blood work, 12-lead ECG, and a urine sample. Each week, I would meet with the psychologist and physician.

As a Phase 3, Placebo-controlled study, only a computer knew if I was taking the real medication or a placebo.

During this visit, I loaded an app on my phone, viewed a tutorial, and practiced. The Clinical Trial Coordinator returned to observe me as I used the app with the medication.

The awkward inner nine-year-old me flashed back to elementary school. My teacher had to give me asthma medicine during class, and I gagged while everyone watched.

Every dose required me to use the app. If I didn’t, the app alerted the coordinator. My phone became a snitch. The nerd in me appreciated the Artificial Intelligence (AI).

We scheduled the next appointment, and I left with a week’s worth of medication packaged in a cardboard blister pack so large it didn’t fit in my purse.

Twice a day, the alarm on my phone reminded me to dose. This required me to open the app and hold the pill between my thumb and index finger while the phone recorded the action.

After placing the tablet on my tongue, a prompt instructed me to open my mouth for a picture, then lift my tongue to show that I swallowed the pill. The AI learned to recognize my mouth and fingers, which made the process faster.

The app caused an awkward moment when I took a dose before yoga class. I sat alone in my car, trying to be discreet while making strange hand gestures at the phone while opening my mouth and sticking out my tongue randomly. One quick glance into the car, and my fellow yogi never made eye contact with me again.

In the first week, I could tell it was the medication. My concentration improved substantially, and I didn’t forget my phone or purse.

The study lasted seven weeks. What I hadn’t expected during that time were the caring and friendly environment. I would miss seeing everyone. Even though it was a professional office, we got to know each other as human beings.

Pleasantly surprised when the doctor let me know of an extension study. If I chose to, I could continue for a year with the same medication. The appointments would become spaced further apart. I didn’t hesitate to say yes.

Everything about my experience in both studies was outstanding. I appreciated the opportunity to help. It isn’t easy to find the perfect medication for every individual. I appreciate the dedication of everyone on the clinical team for their part.

Without 23andMe as the instigator, I wouldn’t have known about the trial. Thank you for triggering my “helper gene.”