The National Institutes of Health's "All of Us" study is a project I provide updates about every so often. Initially named the Precision Medicine Initiative when launched, it is a project whose announcement by President Barack Obama received bi-partisan applause and support. And for obvious reasons.
Genes are not political. Chromosomes aren't Democratic or Republican or Independent. We all have DNA in the cells of our body, 99.9% of it almost entirely the same as every person we run into in our lives (and even those we don't). But any day, any of us could get sick. And some medicines or treatments may work on us that don't on others (and vice versa).
Sometimes a single change in the DNA sequence can make all the difference.
I'm not privy to insider knowledge on the progress of All of Us, I just keep my eyes peeled for updates and pay attention when they appear. I sense things aren't running entirely smoothly (see some Twitter snark below, posted a few weeks ago). But it is a big project with lots of players involved. And in spite of great challenges a big project like this faces, announcements of progress continue.
The latest news to come out is that the first three enrollment centers have been named for the project. They are three sets of health care provider organizations (in other words, hospital-research networks) based in Wisconsin, Alabama, and Florida.
Enrollment centers are the institutions that receive funding to coordinate the consent and enrollment for volunteers of a study. Sometimes, you'll have only one center for a study (here's a great site for searching for research studies, by the way). But for a project as big as All of Us is planned to be, multiple centers will be necessary.
Participants don't necessarily have to receive any care at these locations to participate. They are simply the enrollment hubs and coordinate the education and consent of participants. In other words, they're the wheels on the bus that make the project go all 'round the town.
From the start, it has been a stated and central goal of All of Us to enable discoveries that will be useful for all Americans. In the past, biomedical research in the U.S. has more often enrolled (and therefore given advantage to) Caucasian and male populations. There ought to be a way, in a project of one million people, for every group - minority and majority - to be represented. Anyone who has criticism for All of Us for trying to do this, well, I am just going to call you Scrooge. Someone needs to try, and they are doing it. Their choice of institutions for enrollment centers is first evidence All of Us is keeping their promise to make sure traditionally under-represented populations will not be under-represented in this project.
I want to see this project succeed and hope it does. Everyone deserves to benefit.
If you're an early participant in All of Us (or know of someone who is), please reach out to me. I'd love to interview you for a post on my blog and ask what it was like to join, and why you did.