The National Institutes of Health will today begin trying to enroll one million people across the country in “All of Us,” a study that’s meant to clarify how our genes, lifestyle and environment affect our health. Here are answers to some questions about the nature and potential impact of the $1.5 billion research program, which will be partly run from San Diego.

Q: We’re devoting a lot of space to this story. Why?

A: The answer dates back to early 2001. I was on sabbatical at MIT and was present at a workshop where the legendary geneticist Eric Lander stood up and said, “We have finished a working draft of the human genome.” It was the most electrifying moment I’ have ever experienced as a science writer. Right then, right there, I began to grasp the importance of genomics.

Seventeen years later, we’re beginning to see genetic research lead to a significant number of therapeutic drugs. And we’ll see more, partly because the All of Us program will sequence the genome of large numbers of people — perhaps tens of thousands. I want to make sure the public knows about this.


Q: Is the All of Us study limited to genetics?

A: No. The NIH is asking people to do everything from share their electronic health records to fill out online surveys that ask some very personal questions, including ones about mental health. This will produce a massive database that will help scientists to better understand how genes, lifestyle and the environment factor into disease. Physicians will use these discoveries to customize treatment for patients. The NIH calls this “precision” medicine. It should have stuck with an earlier term, “personalized” medicine. It all comes down to how a physician will help you on a personal level.

Q: How will people who join the study benefit from their contribution?

A: Chances are, they won’t. At least not in the short term. It typically takes scientists a long time to make discoveries that benefit a large number of people. And the people who participate won’t be rewarded financially if their data helps lead to a new drug. NIH also has yet to figure out how it will share genomic information with participants in a way that people can grasp, and apply.


Q: So why would anyone enroll in this program?

A: The NIH is appealing to people’s sense of altruism. It’s like donating blood; you’re helping society. This could make the project a tough sell, especially since people are being asked to share the most personal details of their health. The NIH has come up with a catchy title for the study: All of Us. But the agency has not come up with a tagline that explains how people’s contributions could help transform medicine. I’m surprised the NIH hasn’t done more to help the public visualize the benefits.

Q: What about privacy concerns? Who in their right mind would turn over their personal medical information?

A: That’s another issue that could make All of Us a tough sell. The NIH has said that it is devoted to protecting sensitive information. But the National Security Agency — among other federal institutions — said the same thing. And it lost crucial data to hackers. This is a problem throughout society. I think a lot of people are on edge about Facebook’s failure to protect their data from Cambridge Analytica.


Q: You’re citing a lot of concerns. Do you think All of Us will actually turn out to be a successful program?A: I do. There are a lot of wonderful people involved, including Dr. Eric Topol, the director of the Scripps Translational Science Institute in La Jolla. His institute, among doing other things, will try to recruit about one-third of the one million participants that NIH is seeking. Topol has a gift for explaining how scientific studies and emerging technology can benefit people. He talks to people, not at them. He’s also very charismatic. So is Francis Collins, the director of the NIH. I know this because I heard him speak on the same day that Eric Lander said, “We have finished a working draft of the human genome.” He was standing a few feet from Eric.

As I said, it was electrifying.

Q: Are you going to enroll in All of Us?

A: Yes. Both of my parents had heart disease. So did my younger brother, who died from it. My older brother has COPD. I had a heart attack. That has to be genetic. I want to know why a family like mine has such problems. I might not get an answer. But maybe my data will help someone else.