Getting Your Microbes Analyzed Raises Big Privacy Issues : Shots - Health News Scientists are asking people to contribute samples of their gut microbes to help figure out how those microbes affect human health. But ethicists say sharing that information, as well as the personal health data that make it useful to researchers, poses risks. That's especially true for children.
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Getting Your Microbes Analyzed Raises Big Privacy Issues

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Getting Your Microbes Analyzed Raises Big Privacy Issues

Getting Your Microbes Analyzed Raises Big Privacy Issues

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On this Monday, it's MORNING EDITION from NPR News. Good morning. I'm David Greene.


And I'm Steve Inskeep.

Today in Your Health: Getting your microbiome analyzed. We've been hearing a lot lately about how the microbes that inhabit our bodies may influence our health and well-being, sometimes for the better.

NPR's Rob Stein has been exploring this hot new field of biomedical research, and it got him wondering about his own microbes. So he decided to take a look.

ROB STEIN, BYLINE: Anyone who wants to get their microbes analyzed can sign up for something called the American Gut Project. That's how I met Jeff Leach.

JEFF LEACH: You should join the study as well, and take that journey.

STEIN: A journey through the trillions of microorganisms living in my body, what scientists call my microbiome. It was an intriguing offer.

LEACH: You end up with, you know, a snapshot of all the various bacteria in your gut.

STEIN: A snapshot that could give me important clues about how my microbes may be influencing my health.

LEACH: The fact that they may play a big role in your susceptibility to disease is profound. I mean, it changes everything. And so I think it's a watershed moment for human health.

STEIN: Leach helped dream up the American Gut Project, one of a couple of projects recruiting thousands of people to donate their microbes to science, along with lots of personal information. So researchers can really dig into what our microbiomes are up to.

So I pulled out my credit card, paid the $99, and signed myself up. A few weeks later, a small manila envelope arrived in the mail.


STEIN: OK, let's see what I got here. There's a three-page instruction sheet, a password and an ID number to get my results. Looks like the first thing I have to do is keep a diary of every little thing I eat and drink for a week.

OK, what's this? A big plastic tube. I pop it open and pull out a really big, long, two-pronged Q-tip. So, the next thing I have to do is take that big double Q-tip to the bathroom to, um, collect a sample. Well, no need to go into any more detail about that. So, I do all that and send off my sample.

While I'm waiting, I start asking around about the pros and cons of signing up for one of these projects.

HANK GREELY: I think sending pieces of your microbiome in to be analyzed and posted along with you health information is not for the faint of heart.

STEIN: Hank Greely's a bioethicist at Stanford. He says there are a bunch of concerns about this sort of thing. One is that volunteers could end up finding out really scary-sounding things they never expected.

GREELY: I don't know how likely it is, but we could say by looking at Rob Stein's microbiome that Rob is going to die of cancer in the next three years. That could upset Rob Stein and his friends and his admirers, of whom there are many, no doubt.

STEIN: Well, maybe, maybe not. But Greely says anyone considering signing up should definitely stop and think first. Before we get into all that, let's hear about what my microbes showed.

Hi, Jeff. You there?

LEACH: Yeah. Hey, Rob. I'm here.

STEIN: When my results come in, I connect back up with Leach via Skype. He's in Tanzania, studying the microbes of tribes living in the bush. Leach asks me to open an attachment in an email. A bunch of multicolored bar charts pop up. Some show my microbes, others Leach's, for comparison.

LEACH: Are you able to run your mouse across any of those bars and have a little pop-up window that shows percentages?

STEIN: Yeah. When I roll my mouse over the bar graphs, little things pop that have, looks like names of species of bacteria and percentages.

LEACH: Right.

STEIN: Turns out, my microbes are way different than Leach's. His are dominated by a totally different kind of bacteria than mine. And then something even more interesting jumps out at Leach.

LEACH: And that little pink thing at the top of your bar, you'll see that a little over 4 percent of all the bacteria in your sample belong to the phylum proteobacteria.

STEIN: Proteobacteria. What's that?

LEACH: Proteobacteria is a group of bacteria that includes a lot of your bad guys, like E. coli and salmonella and so on and so forth, the ones that are associated with inflammation.

STEIN: And inflammation is associated with an increased risk for all sorts of diseases, including heart disease and cancer. So it's probably not good news for me that I have so much proteobacteria. And Leach, he has none - zero, zip. And at the bottom of my bar, Leach sees something else.

LEACH: You have very low levels of actinobacteria.

STEIN: Actinobacteria?

LEACH: Those are typically considered good bacteria. So the more actinobacteria you have, the better. These are healthful. They're anti-inflammatory. They basically wage war, if you will, for the lack of a better term, on proteobacteria. So, those are often known as probiotics.

STEIN: You see them a lot in yogurts. Leach has way more actinobacteria than I do.

So compared to Leach, I don't look that great. He's got way more of the good bacteria and none of the bad ones that I have. Meaning he may be less prone to some diseases than I am.

So Leach starts asking me about my diet. He eats the Paleo Diet, which is heavy on stuff like meat and vegetables.

LEACH: So people who typically eat a lot of onion, garlic and leek will have higher levels of beneficial actinobacteria. And so you see that in mine. I would suggest that you probably don't eat a lot of garlic, onions, and leek, at least not as much as I do. So would that be accurate?

STEIN: Well, I love garlic and onions, and I do eat leeks occasionally. How often do you eat those things?

LEACH: Yeah, I eat onions every day. There isn't a day that doesn't go by that I don't eat onions.

STEIN: OK, score one for Leach's diet over mine. He keeps going.

LEACH: Do you eat a lot of whole grains or do you not? And I would say looking at this, I would guess you're not a big whole grain eater.

STEIN: Well, I do eat a lot of whole wheat bread, but not much in the way of heavy-duty whole grain cereals and that sort of thing. So Leach was able to learn quite a bit about my diet and my possible health risks by looking at my microbes. But Leach is the first to admit, this is all pretty speculative. No one can really say much of anything about anyone for sure just by looking at their microbes.

LEACH: Is this going to diagnose your disease? Absolutely not. We don't suggest that this is something you can print out and run down to your doctor's office with. That's not what the project's about.

STEIN: What the project's about is helping scientists learn more about our microbes. Not only what they may be doing to us, but what we may be doing to them - such as messing them up by taking too many antibiotics.

All this gets me thinking about those concerns that Hank Greely, that bioethicist at Stanford, mentioned. So I ask him to tell me more.

GREELY: If you have privacy concerns at all, you shouldn't do it.

STEIN: Here's why. Volunteers disclose lots of very personal stuff about their health, their daily habits, their families. It's all supposed to be kept strictly confidential. But Greely says there's just no way to guarantee that these days. And revealing any kind of personal health information can cause big problems.

GREELY: Job discrimination. Long-term care insurance discrimination. Those are legitimate concerns.

STEIN: And there are even more concerns. The project is analyzing the genes of the microbes. But bits of your DNA might end up in the sample and be made public.

And there's a whole other angle that's really tricky. Eric Juengst is a bioethicist at the University of North Carolina in Chapel Hill. He wonders: What if someone ends up profiting from research involving our microbes? Should we get a cut?

ERIC JUENGST: It may turn out that I actually have a potentially lucrative biome if I have the right bacteria. Maybe I should have some control over any profits that could be made from them.

STEIN: Profits from, say, a popular probiotic, or yogurt made with the helpful bacteria. So I ask Leach about all this. First of all, he says, the project is all about advancing science, not making money. And the project is taking pains to keep everything private.

LEACH: In place are the most stringent privacy protocols that you could possibly imagine. It's all under lock and key, if you will.

STEIN: But Leach acknowledges that there are never any guarantees.

LEACH: There's always a chance somebody might be able to figure out your sample, your results or whatever. So if those concerns are there, then we tell people, you know, not to join the study. Because it's not 100 percent foolproof. Nothing is.

STEIN: So there you have it. I should think about eating more garlic, leeks, onions and whole grains. And, if I'm worried about all this getting out in the public, well, I probably shouldn't have decided to put it on the radio in the first place.

Rob Stein, NPR News.


INSKEEP: And for an animated tour of the human microbe, go to You're listening to MORNING EDITION from NPR News.

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