Tuesday, April 28, 2009
Why would a healthy person want to be a human guinea pig, subjecting himself to hundreds of medical tests? If you're a biotech writer, maybe it's because it provides a great deal of rich information for your work. Journalist and author David Ewing Duncan talks about why he decided to be an experimental man.
MAUREEN CAVANAUGH (Host): I'm Maureen Cavanaugh. You're listening to These Days in San Diego. Every once in while, even though you're feeling pretty good, your doctor may suggest getting some tests just to be on the safe side. So, you get some blood work done, maybe even an MRI, and, well, it's stressful knowing that the results could tell you a little more than you ever really wanted to know. Now imagine subjecting yourself to almost every kind of medical testing available from brain scans to DNA screening. My guest, journalist and author David Ewing Duncan, has voluntarily put himself through nearly 200 medical tests, all in an effort to find out what cutting edge medical science can really tell us about our bodies and our environment. David Ewing Duncan is a biotech writer and correspondent for NPR's "Biotech Nation," and author of the new book "Experimental Man: What One Man's Body Reveals about His Future, Your Health, and Our Toxic World." Hi, David, welcome to These Days.
DAVID EWING DUNCAN (Biotech Writer/Author): Good to be here.
CAVANAUGH: Now, first of all, just to be clear, you were and are a healthy guy, no medical reason to take a lot of tests. So why did you decide to become a human guinea pig?
DUNCAN: Well, that’s, in some ways, the point. We’ve always, in the past, I mean, since the beginning of time, have treated the sick and that’s what medicine’s been focused on for good reason. We didn’t really have much of a way or technology to be able to predict where medicine may go. And this is really a – one of my friends called it a postcard from the future when he read the book, and in some ways that’s what it is. It’s a future, and beginning to be a present, where we’re actually going to be able to predict what may come down the line using these tests and what’s available inside of our bodies now that can tell us about the future.
CAVANAUGH: So I said you took just about 200 medical tests. Is that a reasonable number?
DUNCAN: Yeah, it’s probably around 250 actually.
CAVANAUGH: Oh, my gosh. Tell us just a few of the tests that you took.
DUNCAN: Well, the book is divided up, and the testing, into four areas. It’s genes, environment, brain and body. So in each of those categories, I took – just to give you a rundown, about – millions of genetic markers were tested. I had about two liters of blood drawn out of me over the course of a couple of years for various tests. Genetics, environmental toxins on board, things like pesticides and dioxin and things like that, brain scans, body scans, you know, we can stop there but that’s – that’s enough, right?
CAVANAUGH: That is enough. But you didn’t stop there, that’s the scary thing. Now I’m wondering, since you undertook to do this all on your own, you paid for these tests, right?
DUNCAN: Well, I got most of it done pro bono and most of these aren’t available to even pay for…
CAVANAUGH: Oh, I see.
DUNCAN: …because they’re still in the – you know, in the early stages, protype phases, or they’re in a research lab. I did do – It’s based on two articles, one I did for Wired on genetics and one on – for National Geographic on environmental toxins. And those magazines paid for some of these and then I had some other assignments that paid for them. But it would have been around $150,000 if I tried to do it myself.
CAVANAUGH: And what were some of the most substantive things you learned about your body?
DUNCAN: Well, you get, first of all, an enormous amount of data and in the book and in my other writing and as I’m running around giving talks here, I do talk about the implications of this data. And one of the implications is that right now it’s masses of data without a home really or a way to even properly analyze it and that’s one of the problems, but I think it will be solved but, you know, millions of genetic markers, what do you even do with that?
DUNCAN: But I did find several things. Probably the most interesting one was at the end of the book I try to tie together lots of things, and I tied together all kinds of tests, genetic, heart, CT scans, etcetera, for heart attack. And I don’t have heart attack in my family or heart disease in my family and actually my score when I went in to see my internist at the beginning of the project, I had a very low risk for heart attack. But according to the study, I had a very high risk, and I was a little surprised by that but when they explained it to me and I talked to doctors and went all over speaking to experts, it turned out that it looks like I may have a high – higher risk for heart attack based on some of this new kind of technology.
CAVANAUGH: And in the book, you describe getting that phone call and how disturbing it was to you because, I mean, this was completely out of the blue. You had no idea that that would come back.
DUNCAN: No, that’s right. In fact, it wasn’t a phone call. I was sitting in a conference room in South San Francisco, a company – the company that tested me, and I – you know, we were all expecting this to be boring. In fact…
DUNCAN: …this is a product they’re developing and they weren’t even sure they wanted somebody as healthy as me to be tested first. But it turned out I was much more interesting. And it actually revealed, not to get into the gory details here, but it actually revealed that I have a particular genetic proclivity to not absorb cholesterol very well into my liver. I mean, that’s very – a huge simplification there but that was something revealed by this – these tests, and I actually have to really, really watch my cholesterol and my weight. If I don’t gain weight and if my cholesterol stays low, I don’t have much of a risk at all. Now you might say, hey, we already knew that but I didn’t know that for me, and I’m very – I’m very, very sensitive to weight and cholesterol, much more than most people, and that’s the point here. I’m different than you, and that’s really where all this is headed. It’s called personalized medicine. It’s where we’re trying to move into an age – In a funny way, it’s back to the future, it’s back to when the doctors, 50, 60 years ago used to look at us as individuals rather than as just mere statistics. In a funny way, technology’s allowing us to both have more sophisticated medicine but also to have more personal medicine.
CAVANAUGH: You also found out some very interesting things about the toxins that you’ve retained in your body. Tell us about that.
DUNCAN: Well, this, in a way, I think is the most newsworthy part of the book, which is linking not only the environmental toxins but also the genetics. And I did, I was tested for 320 environmental toxins. You know, as I said, pesticides, PCBs, plastic additives like Bisphenol A. And, you know, we could all go out and get these tests but they’re very expensive and I was fairly average on most of them but the news there is that I actually have them inside of me, hundreds of them, and at very tiny levels, parts per billion, parts per trillion, and nobody really knows how dangerous these small trace levels are. But it turns out that, I mean, you probably have them and we all probably have them and what does that really mean especially when you cross it with the genetics because we each are born with a particular array of defenses, genetically for what happens in the environment and, you know, for instance, I was tested for mercury and I have a couple of genes that make me – gene markers that make me sensitive to mercury.
CAVANAUGH: And you also have a gene or something that also allows you to get rid of mercury rather quickly.
DUNCAN: Yep, that’s right. Well, actually I have both. This is where it gets a little confusing. And this needs to be worked out and we’re still really years away from understanding this but there are 13 genetic markers that I found in the literature, the medical literature, that have to do with ridding your body basically of mercury. And so mercury normally stays in your body about 30 or 40 days and it comes mostly from eating big fish. You should go out and eat fish but maybe the big fish, you should think about because…
DUNCAN: …that’s where they – it tends to accumulate. But – So I was tested for these 13 and at first I thought I was clear. I had, you know, the normal variations, which meant that I, you know, I got rid of mercury in the 30 or 40 days. But upon further examination, we discovered that I have two of the 13 actually do make me a bit more sensitive and what that means is I don’t flush the mercury out potentially—this is sort of hypothetical—it may be that I don’t flush out the mercury quite as quickly and this particular type of mercury that comes from fish collects in your brain.
DUNCAN: And you don’t want it in your brain. And so you want to get – you want to flush it out, and your body, you know, evolution has given us the tools to flush these heavy metals out. They’ve been around a long time but some of us don’t quite have the capacity that others do.
CAVANAUGH: Interesting. I will continue my discussion with David Ewing Duncan about his new book “Experimental Man.” You’re listening to These Days. We’ll be back in just a few minutes.
CAVANAUGH: I'm Maureen Cavanaugh. You're listening to These Days in San Diego. And my guest is David Ewing Duncan. He is a biotech writer, correspondent for NPR's "Biotech Nation," and author of the new book "Experimental Man." David voluntarily put himself through nearly 200 medical tests all in an effort to find out what cutting edge medical science can really tell us about our bodies. And, David, I want to go back to what you were talking about, this age of personalized medicine and have you maybe expand on that idea. What can all these tests potentially tell us that is going to help people be healthier in the future?
DUNCAN: Well, in a way, we’ve already got some of it, and we don’t use it as – some of the things we already have. I mean, there’s fascinating studies on, say, smoking cessation. If you teach a junior high school student in a course that’s been laid out by, you know, by experts in this, it can show benefits by people not smoking. And those sort of things are available right now. It’s, you know, it’s cheap, it’s not high tech like the things I describe in my book. But what I’m talking about is incorporating not only that but also all of these tests that are sort of tantalizingly close to being ready, genetic testing, even using scanning technologies if they’re safe. And I think on a broad front, after looking at, you know, 250 or so companies and labs and having all of these tests run, that we’re much closer than actually a lot of people realize. And, you know, we live in a society of experts and if you think of the forest and the trees analogy, a lot of people in this field, scientists, physicians, others, are trees.
DUNCAN: And I got to look at the forest. And, in fact, the forest is really – I don’t mean to mix things up here but, in a way, it’s our entire bodies and, you know, all of our healthcare combined. And I looked at that holistic view and I think we’re much closer than we think to an age where healthy people, before you get the disease, can be tested and get some idea. It’ll be a risk factor, a probability, of what may be coming in the future.
CAVANAUGH: But even so, that time is not exactly now. Is a lot of this testing unnecessary today?
DUNCAN: Well, I don’t think much of it is ready, you know, the higher – the high tech end of things. Most of the genetic testing that you hear about is really for populations, not for individuals, and it still needs to be validated clinically. You need to literally run clinical trials, not quite as complicated as testing a drug but you need to take these markers inside of you and see if they really do manifest as disease. A lot of the scanning technologies are in the early days and, you know, there’s an issue with CT scans, you know, with radiation, which is very serious. The MRI scans for the brains are in a very early stage. You know, you can detect – There actually is a company here in San Diego that about a year ago started offering a product where they can scan for early stage Alzheimer’s and you can see in some of – in some of these scans evidence of Alzheimer’s even before symptoms are shown, and that could be incredibly useful but that’s a thousand dollars for that test. So these things are beginning to come but they’re still a little ways off.
CAVANAUGH: I was going to ask you, did you put yourself at risk at all in having all these medical tests?
DUNCAN: Well, when I started the project, I made a deal with my internist, who is overseeing this whole project at UC San Francisco, that I would do no harm to myself. And I only violated that twice and once was I did get a full body CT scan and that does expose you to a certain amount of radiation and there’s some tests that suggest that just doing that as a healthy person is a really bad idea. It’s still a little inconclusive but, clearly, exposing yourself to radiation for no particular reason. Now if it uncovered a lot of interesting medical issues, that would be one thing but as of yet that is really still an unknown and probably doesn’t really find that much for most people.
CAVANAUGH: So these full body scans are really not good if you – if you’re really not sick and you don’t need it.
DUNCAN: Well, interestingly enough, when I try to look around to see the studies, there have been a few but you can’t get such good statistics. But certainly the experts, radiologists, pretty much everyone in the medical field, discourages one from doing this. You can do it. It’s not – you know, it’s something you can go out to a freestanding clinic if you can find someone to actually run the scan. But the kind of statistics are one in a thousand, you know, or even worse odds that you’ll actually find something. And even when you do, it’s probably not anything. I found a bump on my kidney.
DUNCAN: And, you know, not being the worrisome type about this anyway, I sort of let it go for quite awhile and then I finally took it to a radiologist and she said, well, you know, it – I can tell from looking at it that it’s not cancerous. But you can’t always tell that and then you have to, you know, maybe do a biopsy or…
DUNCAN: …some other invasive procedure. And it still probably will turn out to be benign, and that’s the problem here. You might actually put yourself in danger getting – having a procedure to check it out when, in fact, it’s – the odds are that it’s not going to be anything.
CAVANAUGH: Now, David, you did not have your full genome scanned. Now I’m going to ask you why not but first I’m going to ask you what does that mean, having your full genome scanned?
DUNCAN: Well, I mentioned before the heaps of data out there, and mostly I’m talking about genetic data. There are thousands and thousands of studies or at least thousands of markers from everything from, you know, supposedly intelligence to diseases and much of it is very, very preliminary. And so a full genome scan is basically – it’s all 3 billion base pairs in your body. You know, every single nucleotide, you know, every – every inch of your – or every mic – what is it, nano-particle in your body…
DUNCAN: …in your genome. And that has been done, I think, around 20 or 25 times in 20 or 25 individuals. And because it’s such a small number of people and there’s so little really known actually about most of the genomes, there’s just not much you find out. And they’re beginning to find some interesting things but even with the millions of markers that I’ve had tested, which basically are the low-hanging fruit that have been discovered over the last several years that seem to correlate with different disease, you know, it’s still only a few dozen of them maybe are that useful.
CAVANAUGH: I was so interested to see in one of the MRI scannings you had, when – basically they wanted to see how your brain was reacting to things that you said you liked, pieces of music and DVDs and so forth. Your brain found out that you were lying when you said you liked a particular movie. Tell us about that.
DUNCAN: That’s right, my brain outed me.
DUNCAN: So I was tested at NYU…
DUNCAN: …for what’s called neuromarketing. And they’re actually – marketing people are actually sticking, you know, consumers into an MRI scanner and showing them products. So I was shown movies and CDs and things like that and I was shown “Pan’s Labyrinth.”
DUNCAN: The movie came out two or three years ago…
DUNCAN: …a very art – dark art movie. And since I, you know, I fancy myself a filmmaker, I’ve made films, things like that, I put, yes, I love this. But, in fact, my brain actually much preferred “Dodgeball,” the movie, to “Pan’s Labyrinth.” And that may just be because “Dodgeball” is designed to hit those emotional centers in your brain, like the sort of juvenile, 13-year-old boy centers of your brain.
CAVANAUGH: We have to end it there, but do tell us a little bit about experimentalman.com.
DUNCAN: Right, well, the – we couldn’t even come close to putting everything in the book, all the data, and everything is on the web – this website, experimentalman.com. And I have a new program at UC Berkeley that’s getting into some of these issues, a policy center called the Center for Lifescience Policy and we developed the site and it’s got everything you’d ever want to know about personalized medicine. And you can even take a couple tests yourself.
CAVANAUGH: Fabulous. And you can meet David Ewing Duncan tonight. He’s, of course, the author of "Experimental Man," at a reception and booking signing at 6:00 p.m. at The Book Works in Del Mar. If you want more information, you can go to KPBS.org/thesedays. And thank you so much for coming in, David.
DUNCAN: Thanks for having me.
CAVANAUGH: You’ve been listening to These Days on KPBS.