Should You Sign Up for the Massive 'All of Us' Medical Research Study?

In truth, nobody knows what the study will find; thats the whole point of doing it.

Health research needs lots of participants for researchers to draw solid conclusions.

The project also hopes to sequence participants entire genomes.

In truth, nobody knows what the study will find; thats the whole point of doing it.

But theyre trying pretty hard to reach people who are underrepresented in medical research.

If theyre successful, thats a big step forward for the field.

Instead, you just benefit by knowing your data is helping researchers.

They also say: In the future, we hope to enroll these populations.

You dont need a computer or mobile rig, although it helps.

What Do They Want From Me?

All of Us gets your name when you sign the research consent form and agree to participate.

Some of it is optional; you could decline to submit this data but still participate in the study.

Answers to survey questions.We will ask you questions about your health, family, home, and work.

You do not have to answer any question you do not want to answer.

Fitness tracker data.For example, we may ask you to do a short walking activity.

Location data.This will help us understand how active you are.

We do not collect your actual location, just the distance you travel.

Theprivacy policydoesnt mention it, but the website also asks for security questions when you sign up.

to…reallyidentity-compromising questions like What are the last five digits of your drivers license number?

Fortunately, the consent process isnt just a massive sheet of fine print.

(Your health records may contain sensitive data.

For example, they may tell us about your mental health, or use of alcohol or drugs.

They may also show sexual or other infections, including HIV status.)

Your blood, urine, and saliva.

Samples will be stored in a special facility, where researchers can ask to access them.

Then, you might be asked to donate more.

Your DNA, extracted from the samples.

Body measurements, including height, weight, blood pressure, and waist measurements.

(This would be done at a 15-minute in-person appointment.)

Data that they gather from other sources.

Your data will be available to researchers with a code number instead of your name.

That said, they have very detailed information even without your name.

They could misuse your information.

We believe the risk is very small, but it is not zero.

And they say they have thoroughly vetted the behind-the-scenes tech team that has access to sensitive data.

So unlike most research studies, you cant fully know what youre consenting to.

But if some of your data has been turned over to researchers, theres no taking it back.

The study can answer questions, including those about privacy, at[email protected]or 1-844-842-2855.