A reader sent me a link to an interesting article about “citizen scientists” – people who don’t bear the official “scientist” stamp from a university, but are nonetheless running their own small experiments and sharing their data online.  Some quotes from the article with my comments:

More than a decade ago, in hopes of advancing research on the rare genetic disease that afflicts her children, Sharon Terry let two different researchers draw their blood for study. But when she asked for the results of the investigations, the scientists gave her a startling response. Information generated from her own children’s DNA, they said, didn’t belong to her.

Well, if the state of Ohio decides her children are too fat, they won’t belong to her either.

Today, Ms. Terry is part of a growing movement to unlock medical secrets by empowering patients to gather, control and even analyze their own health data.

Members of this loose collective of amateurs, who call themselves “health hackers” and “citizen scientists,” also perform their own analyses and use the Internet to create and run experiments and clinical trials. They all believe that too much science happens behind closed doors.

I agree, but that’s because most health science these days is being conducted in hopes of developing a new pois—er, drug that can be patented.

The controversial notion that people with no formal scientific training can make meaningful research contributions arose a few years ago, prompted in part by new, inexpensive DNA tests intended for consumers.

I can see why the notion is controversial.  Thomas Edison, Alexander Graham Bell, Ben Franklin — they never would have contributed anything worthwhile without first getting their PhDs … no wait, sorry, I had them confused with people who attended college.  Well, perhaps Thomas Edison had some brilliant professors during his four months of formal education.

Critics of this new wave of citizen scientists point to several potential problems. Amateurs may not collect data rigorously, they say, and may draw conclusions from sample sizes that are too small to yield statistically reliable results.

We’d better train them not to do that.  Otherwise they’ll end up declaring that red meat causes cancer and restricting salt is the cure for hypertension.

When an individual patient determines that something is making him feel better, “that’s great,” says Harlan Krumholz, a professor at Yale School of Medicine, “but to find something that I can put in a textbook and encourage everyone to offer to patients requires a stronger evidence base.”

Don’t be silly, professor.  Lack of strong evidence didn’t stop the makers of Lipitor or Prozac from getting really, really rich.

In traditional studies, scientists guard their data from outsiders for several reasons. They fear that someone else might take that data and publish a finding ahead of them, taking credit for their discoveries. Even after a study is done, they often prefer to keep the data private, for any potential future discoveries.

Or so people don’t look at the data and say, “Hey, look!  There was a small reduction in cardiovascular events in the statin group, but more people died.”

Citizen-science projects don’t fall under the purview of the Food and Drug Administration, since they generally don’t involve testing or developing anything new—such as a new drug, medical device or diagnostic test. The experiments usually test things like vitamins that are already FDA-approved or sold over-the-counter.

Earlier this year, prompted by the growing availability of consumer DNA tests, the American Medical Association sent a letter to the FDA saying that genetic testing should only be done with the guidance of a doctor or trained genetic counselor.

In other words, “People should have to pay us for an office visit before they learn anything about themselves on their own.”

Doctors worried that people might not understand the genetic information being explained to them.

When I lived in California, I had to explain to my doctor that my LDL score was calculated and probably wrong since my triglycerides were very low, and that there’s a difference between small, dense LDL and large, fluffy LDL.  (Not the doctor in Fat Head, by the way.)  Since I wasn’t wearing a white coat at the time, he seemed to assume I making it all up.

As for interpreting results of a DNA test, there’s this new method of acquiring information called the Internet.  Anyone motivated enough to take a DNA test at home will probably make the effort to look up the explanations.

Melanie Swan, an investment adviser in Silicon Valley, is one of the citizen scientists questioning the traditional approach. She has written a smart-phone app that lets users study their genetic data to find any correlations between known efficacy rates for drugs associated with certain genes. Ultimately, she says, the goal is to help patients tailor their own treatment plans.

So she’s an investment adviser, not a programmer by profession, but she wrote her own smart-phone application … I dunno, she may not have the intelligence to interpret a DNA test without a doctor helping her past the big words.

Richard Nikoley of Free the Animal gave an excellent speech at the Ancestral Health Symposium about n = 1 experiments, the point being that if you try different diets, supplements, exercise programs, etc., and carefully track the results, those results are relevant –- for you, if not for everyone else.  If you adopt a low-carb diet and your roller-coaster glucose level stabilizes, it’s relevant.  If you give up wheat and your psoriasis or arthritis vanishes, it’s relevant.

Now we’ve got people sharing their individual and small-group experiments online, which means they can go a step beyond n = 1 and learn from each other’s results as well.  The Wisdom of Crowds in action.

I think this is a terrific trend.  Somewhere, Ben Franklin is smiling.

  • Facebook
  • Twitter
  • Share/Bookmark
35 Responses to “Citizen Scientists”
  1. Jesse says:

    I love it! It’s like crowdsourcing taken to an entirely new level. If you don’t know about it yet, check out shareable.net for a peek into the sharing economy that’s beginning to sprout up all over the place. This kind of science fits right in and makes me just a little more optimistic for the future.

  2. scientist-type says:

    As a scientist who sometimes wishes I could share more findings with our research participants than is allowed, I just want to say that not all scientists refuse to release their results for selfish, self-promoting reasons. There are many regulations which, for example, prevent release of ‘research-based’ results to study participants, because most research labs aren’t certified for diagnostic testing. The certification process is very expensive and cumbersome, and therefore unrealistic for most small research labs to undertake, and without such certification, the researchers and their institutions are open to lawsuits, government-inflicted penalties, etc. Sometimes ethical conundrums are created where no clinical testing labs exist for a particular test- usually because it is so new, or for a very rare disease or something, so not profitable- so the only way a patient could get a result is through a research lab, but research labs aren’t allowed to release such results, or if in some cases they can provide them with caveats, etc, it is a risky legal grey zone.

  3. scientist-type says:

    Well, on further thought, maybe my motivations are a bit selfish, in that I want to avoid destroying my career prospects as a scientist by breaking laws and angering my employers!

  4. gallier2 says:

    One only needs to look at ClimateGate http://wattsupwiththat.com/2011/11/22/climategate-2-0/ http://wattsupwiththat.com/2011/11/30/climategate-2-0-emails-thread-2/ to see that the bad state of science is not a fluke of the nutrition/medical discipline.
    I have formal training in science (physics), but didn’t graduate because I prefered a career in IT. One thing I noticed at the time I was at the University, the most that followed up to get a PhD were the ones that were incapable to get good jobs with a diploma. There were the 1 or 2 who were motivated from the beginning, but most were people who continued at the University because nobody else wanted them.

    Don’t get me started on ClimateGate.

  5. PJ says:

    You see what this REALLY is Tom, right?

    It’s: “We have kept the bible in Latin, because you must go to the priest to learn about your relationship with God.”

    The idea that intelligence is limited to people who kept their ass in a chair moving at the same pace as the herd, is ludicrous. Pretty much all the most intelligent and critical-thinking people I know are profoundly autodidactic — whether or not they had advanced, or much of any beyond the basics, schooling.

    PJ

    There’s a reason the religious authorities persecuted John Wycliffe, who translated Bibles into English.

  6. FrankG says:

    You don’t even have to go as far back as Edison for examples Tom – Bill Gates and Steve Jobs, both dropped out of college.

    I’m also a big fan of the internet and I am hopeful that the free-exchange of information that it facilitates, is going to make (has already made) big changes in the world.

    I’m sorry to say I even read Stephan Guyenet falling into the “appeal from authority” in his on-going spat with the apparently uncredentialed Gary Taubes. I take that as a sign of a weak position… either your arguments stand on their own strength, or they don’t… letters after your name don’t change the evidence based facts.

    On the other hand I was watching a PBS show “Lord of the Ants” last evening. It profiles E.O. “Ed” Wilson, biologist, researcher (sociobiology, biodiversity), theorist (consilience, biophilia), naturalist (conservationist) and author… who has also had his share of controversy over the years, but now in his 80′s is unquestionably a scientist of the highest repute. In the show he describes himself as an “Entomologist… a student of insects”. When others look to him as the “expert”, He still calls himself a “student”!

    Frankly, when supposed experts try to dismiss Gary Taubes because he’s “just a journalist,” I have to laugh.

  7. Nina says:

    ‘Melanie Swan, an investment adviser in Silicon Valley, is one of the citizen scientists questioning the traditional approach. She has written a smart-phone app that lets users study their genetic data to find any correlations between known efficacy rates for drugs associated with certain genes. Ultimately, she says, the goal is to help patients tailor their own treatment plans.’

    Stop teasing us. What’s it called? Is there a link?

    Nina

    Unfortunately, the article didn’t specify.

  8. Lauren says:

    When I was in 6th grade, I conducted a science experiment where I build two solar water heaters using different materials, to see which was better. I presented the results at a science fair and won 2nd place. No one called my results “unscientific” or “irrelevant” because I was 12 or because I only tested the heaters in my own backyard or built them in my garage. I was complimented on how I followed the basic experimental laws. If a 12-year-old can do it, why can’t a 31 year old (i.e. me, now) Why, if I should apply the same laws to my health, am I considered foolish? It’s like they don’t want me to think for myself – sheesh!

    If you tinker in your basement, they don’t mind. It’s when you start making data available that they get nervous.

  9. AndreaLynnette says:

    These people, these “real scientists” and “real doctors,” are elitists. They have been taught to believe that they are better than the rest of us, like the nobles and clergy way back who ruled by divine right and could tell everyone what to do, never questioned about WHY.

    It’s the same fight that regular people are having with news and entertainment megaliths. Bloggers aren’t “real news sites” and not protected by freedom of the press, a guy who makes his own movie and puts it out there can be sued by some studio that stole his idea, but has the money to bury him in legal mumbo-jumbo.

  10. Phyllis Mueller says:

    Tom, can I order Fathead DVDs to be shipped to someone other than myself? I want to send one as a gift (to my niece, who just told me she is going back to school to study for a degree in nutrition).

    I didn’t notice separate “bill to” and “ship to” fill-in-the-blanks. Did I miss something in the ordering screens?

    We often receive two orders from the same person, one going to a different address. I haven’t stepped through the PayPal cart, but I’m sure it’s possible.

  11. Mike says:

    It’s like the open source of science. Tom, do you have any links to sites that host all sorts of open source experiments? If not, I don’t know what kind of programming you do, but would you be interested in getting involved in developing such a site?

    I think it’s a cool idea, but I don’t have time for another project.

  12. Josh says:

    The controversy surrounding over-the-counter DNA testing is not only affecting the individuals interested in finding out about their health, but also the genealogical DNA community. The International Society of Genetic Genealogy (ISOGG.org) is a large world-wide community of individuals who network together to discuss issues pertaining to genealogical DNA research. There is even a PAC due to some in government who want to restrict or ban any type of over-the-counter DNA kits. I am the Administrator of several DNA research groups and provide DNA consultations/project to many clients every year. I cannot fathom having this type of information restricted. It is our DNA!

    It is yet another case of government insisting that:

    “You don’t know what is good for you!”
    and
    “We don’t want citizens to be confused”.

    They’re aiming to restrict supplements, too. Can’t have me finding out if a harmless dose of tryptophan cures my insomnia (which it did) without a doctor’s approval.

  13. Mike says:

    Unless properly trained I don’t think investment advisers should be writing smart phone applications.

    I was never properly trained as a programmer. I’d resign my current position in protest over my lack of qualifications, but I’m too busy cleaning up mistakes created by a previous programmer with a degree in computer science.

  14. Jorge says:

    As a scientist ive always considered myself to be a citizen :-) Most scientists, in fact are a subset of the greater citizenry. However, not all citizens are scientists. That is not to say that a huge # of scientific breakthroughs are made by ‘everyday people’ (thanks Sly!). It’s just that WAY more pseudo scientific quackery comes out of this same set. So be careful, esp on the net. Replicability, clarity, transparency, etc are vital for both groups: the pharmaceutical engineers as well as the future Steve Jobs in garages.

    As Richard Feinman says, follow the data.

  15. Jorge says:

    Oh yeah, the above was sorta a causality joke. Readers of this are familiar with the danger in believing everything you encounter. Action item? Grind a telescope mirror with your kid. Understand corporate secrecy by starting up your own company… that’s you not me!

  16. Lori says:

    Awhile back, there was another article in the WSJ warning people not to try a FODMAPs diet on their own. Why? It can be tricky! The real reason is that if elimination diets became a household remedy, a lot of dieticians, nutritionists and gastroenterologists would be out of a job.

    LOL … how tricky could it be?

  17. Bill RN, BSN, CEN says:

    Great post Tom.
    One of my nursing professors made that comment that when we get our nursing degrees and take the certification exam, it only means that we are minimally competent and have met the minimum requirements to take care of people. Kind of scary when you think of it that way. It probably is the same for some of our “educated” elite in my opinion, since they stay minimally competent.

    Even if they’re more than minimally competent, it doesn’t mean the rest are incompetent, which is what many of them believe.

  18. Rocky says:

    Translation:

    “We’re frightened that the stranglehold we’ve held on medical information is starting to crumble. The thought that the consumers of today’s medical goods and services might become informed consumers is a threat to our egos, and more importantly, our profits.”

    Bingo.

  19. Lepoth says:

    Jimmy was doing some monthly n=1 tests for a few months last summer that he shared on his blog. Some of the results were pretty interesting:

    http://livinlavidalowcarb.com/blog/n1

  20. FrankG says:

    This looks like Melanie Swan’s App “DIYgenomics” — https://market.android.com/details?id=org.diygenomics.pg&hl=en

  21. FrankG says:

    On second look they have their own DIYgenomics website now, and yes there is also an iPhone version ;-)

    http://www.diygenomics.org/mobile.php

  22. Peggy Cihocki says:

    “I can see why the notion is controversial. Thomas Edison, Alexander Graham Bell, Ben Franklin — they never would have contributed anything worthwhile without first getting their PhDs … no wait, sorry, I had them confused with people who attended college. Well, perhaps Thomas Edison had some brilliant professors during his four months of formal education.”

    You can add Charles Darwin and Gregor Mendel to the list of citizen or amateur scientists. Neither had training in their respective disciplines, but where would we be now without their contributions to science? I mean, really!

    Good additions to the list.

  23. Martin Levac says:

    All science is merely a series of n=1 experiments. It seems absurd to think it’s not science when we do have just n=1, but it is science when we have n=2. Which is to say, science is defined only by three characteristics:

    1. Observation
    2. Hypothesis
    3. Test

    I bet that those scientists who oppose popular science are those who most often skip one or more of those steps in their own work. Epidemiology comes to mind. In fact, I’m certain that’s the case. It’s easy to see how a scientist with a conflict of interest would be exposed if his hypothesis, which he got from observations but did not yet test, would suddenly be falsified by a series of simple n=1 citizen experiments. We can’t have that.

    On the other hand, the true scientist would welcome confirmation from laymen. Maybe.

    I suppose it’s an instinct among some to protect their territory.

  24. Craig says:

    I was in a social setting once with a doctor who made a joke about cholesterol. I made a brief remark about cholesterol only clogging arteries when it is patching up inflammation caused by some other factor like high blood sugar, refined vegetable oil or smoking. I just got a patronizing smile and a condescending, “Well that is certainly a unique theory about heart disease.”

    The bad thing is, there is very little you can do to debate a doctor in public without people thinking you are a crackpot, despite the well-researched scientific fact that inflammation is highly linked to clogged arteries.

    You can always tell a doctor, but you can tell him much.

  25. Underground says:

    It’s very interesting to actually see feedback by BG testing on how different foods affect you.

    A weekly food test? Publish it on the website with BG testing intervals and what other observations to record. Then everyone that wants to participate post up their data.

  26. AndreaLynnette says:

    I just got a patronizing smile and a condescending, “Well that is certainly a unique theory about heart disease.” — Underground

    The only thing you can do with a jerk like that is start appealing to authority. If you’re in a group, while he might now listen, the group will. You talk about the various doctors that support this conclusion, their credentials, and try to get the OTHER people in the room on your side. Someone who responds to you with that level of snark is unreachable.

  27. Ron K. says:

    When dealing with a doctor on the subject of heart disease, I point out the past track record of the medical industry. For over half a century the medical industry knew for a “fact” that margarine and Crisco are “heart healthy”. Now the AHA says to eat zero trans fats. There were food researchers in the 1950′s warning about the dangers of trans fats but were ignored by the medical industry.

    Trying to talk to a doctor reminds me of a quote:
    “White man too smart to listen”, by an American Indian.

    An apt description.

  28. Rebecca Foxworth says:

    I am ALL FOR people being able to manage their own health, research what works for them, and apply it to their lives.
    Without it, without the Internet on which I researched miscarriage for countless late nights, I would be childless.
    After 5 miscarriages, doctors found nothing wrong. 5 miscarriages, and a number of medical interventions and even some fertility medications, I might add.
    I found evidence online that, despite my progesterone being in the normal range, it was still on the low side, and additional progesterone during pregancy could be my solution.
    Five doctors told me, “No.” No, the tests say you’re fine. No, we don’t do anything out of the scope of what is recommended by the experts.
    One doctor said, “Yes.” Yes, she’d prescribe it for me. Yes, I could make another attempt to have a baby with her cooperating and prescribing the medication for me.
    I have now had six miscarriages (I didn’t find out I was pregnant in time to take the progesterone) and two healthy baby girls. All because I researched the Internet, spent three months taking medication with a big red label on it that read, “Do not take while pregnant or nursing.”, and found a doctor that let me advocate for myself.
    Yeah, I love being a citizen scientist.
    And a mom.

    Congratulations, Mom. Another example of why we need to seek out as much information as possible.

  29. Nowhereman says:

    Speaking of such things. Tom, I’ve often seen you reference research, some of which is available online, like the Framingham Study, that show no connection between high saturated fat and cholesterol to heart diease, among other diseases. Is it possible at some point that you can start an archive where people can access this material easily without having to go through the hassle, and one that readers here can add to in order to bring it to other peoples’ attention, all with proper citations, of course.

    So when someone says “show me the research that backs this up”, you can just point them to the page and say “There you go”.

    That’s been a back-burner project for a long time. It will be a huge effort, so it will have to wait until I’m not working full time and taking on side projects.

  30. ethyl d says:

    “We have kept the bible in Latin, because you must go to the priest to learn about your relationship with God.”
    “There’s a reason the religious authorities persecuted John Wycliffe, who translated Bibles into English.”

    Tom, while this comment is not on the subject of “citizen scientists,” I feel compelled to challenge these statements made by “PJ” and you in the comments. You should be careful about making the same mistake you accuse those who promote low-fat nutrition of making: namely, that “everybody knows” something is true because everybody repeats it all the time. The belief that the Catholic Church kept the bible in Latin in a power ploy to control who had access to its contents is well-entrenched anti-Catholic bigotry and betrays ignorance of the actual history of the Church, her encouragement of biblical knowledge among the faithful, as well as the place of Latin in the medieval world. It’s obvious when people make comments such as yours that you do not have sufficient knowledge of the Middle Ages nor of the history of Latin and English to comment intelligently on these topics. Wycliffe was condemned, not because he had the audacity to translate the Bible into the vernacular, but because his translation betrayed a personal agenda and was erroneous in many instances. (Sort of like how you condemn the errors of low-fat diet promoters with their personal agenda.) Please refrain from tossing off assimilated commonplaces about misunderstandings of Church teaching as enlightened truth.

    In the biography I read, translating the Bible according to his own agenda was the charge the Church leveled in order to prosecute him. We have no way of knowing if that charge was true or concocted because the Church was angry with him and wanted him silienced.

    But let’s suppose he did translate with an agenda … so what? Why on earth should anyone be prosecuted for that?

  31. Richard David Feinman says:

    Doctors are not trained in science generally. No reason why a doctor, like any other citizen, can’t do good research but there is no inherent reason why an MD degree makes you any kind of an expert.

    Certainly a lot of them believe learning to prescribe drugs makes them experts on diet.

  32. Dana says:

    Wow. Tim Ferriss must *really* be giving them conniptions. Bless.

    Rebecca Foxworth’s comment reminds me of my experience with vitamin A. My daughter was born with vesicoureteral reflux (VUR) diagnosed at four months of age when she developed a mysterious urinary tract infection. Basically her urine was traveling backwards from her bladder to her kidneys due to faulty ureter valves going into the bladder, and it was worse on the right side, where the kidney was also noticeably smaller. A friend who worked in a transplant clinic informed me the defect is a risk factor for end-stage renal disease later in life. My daughter’s urologist informed me that it was likely a hereditary condition and that there was a 30% chance that any siblings would likely have the disorder. (She has an almost-nine-years-older brother who so far has no signs of it. Naturally, no one tests for it unless there are symptoms, even with that end-stage renal disease risk.)

    When my monthly cycle came back after her birth it was OK at first and then got really heavy. We’re talking scared to leave the house for fear of an accident, break out the rag bag, hunker down and wait a day or so for it to approach something like reasonable. This went on for three years because by the time it became a problem I was off of Medicaid. I was terrified to go to Planned Parenthood and find out something was wrong with me; I’d been neglected on Medicaid enough as it was. (I appreciate PP’s work, I just know how it is with services for low-income people. We’re nobody, really. [And before you ask, I'm on my housemate's Internet service. It's my own income that's low.])

    At some point, based on symptoms, I began wondering if I had somehow developed endometriosis, maybe from adhesions resulting from my daughter’s C-section birth. If so, was it possible to treat it naturally? I went digging around, and in the process ran across the Weston A. Price Foundation’s website and their information about vitamin A. Not sure why I was there, might have been a completely unrelated thing. But I caught mention that vitamin A is important for reproductive health, and also that people with certain medical conditions can’t convert beta carotene. What the hey, I thought, I will go ahead and try this. Found a supplement made from fish liver oil and began taking it regularly.

    Bingo.

    Saw some other information at the WAPF site about vitamin A and kidney development. Warning bells started going off in my head. I Googled around and sure enough, I ran across a research study indicating that vitamin A is important in the signaling process for development of the ureteral buds in a fetus. What’s a ureteral bud? It’s the thing that develops into nephrons in one direction and the ureter in the other. Nephrons are the filtering structures of a kidney, and the number of them you have determines the size of your kidney. I flashed back to Thea’s right kidney being so much smaller than the left, and the reflux being worse on that side. I’d even seen her kidneys and ureters on a dye contrast scan, and the ureter on the right side was huge and all warped looking. I’m amazed the stupid thing even works. The doctor had had to go in and re-insert it into the bladder. (The left side resolved all on its own–the reflux on that side was not too severe.)

    The number her urologist cited as the sibling risk factor doesn’t even sound right to me. 30%? Usually when there’s a risk of inheritance of a genetic disorder, isn’t that number more like 25% or 50% or whatever?

    I also discovered at some point that vitamin A is important for proper organ and body symmetry, and that one of the signs that a developing fetus didn’t get enough is that the right side is smaller or shorter than the left in the resulting child. Bingo again.

    The Mayo Clinic says urinary tract defects are the most common type of birth defect in the United States. Doctors are now telling pregnant women not to eat liver, mind you, and when they bother putting vitamin A into prenatal vitamins it’s not even vitamin A, it’s beta carotene. Children under five can’t convert beta carotene, and not all adults can either. I’m picturing a pregnant woman with gestational diabetes (one of the conditions preventing beta carotene conversion) not getting any vitamin A in her diet and I’m not picturing a good outcome.

    I’m amazed and angry that I managed to find all this out on my own without consulting with the urologist, and that the urologist failed to tell me any of this stuff. He may not have even known. How are these people even allowed to practice medicine? I’m grateful to him for the surgery he performed on my daughter, but what’s he doing to prevent this happening to any other kids? And why would he, when he makes his living from correcting it?

    When the authorities are failing us this much, it’s time we did an end run around them. And they can yell all they like. I’m fed up with them.

    I consider doing an end run around them a form of self-defense.

  33. Wow! Brave souls here! I would never install a phone app without reading about the randomized clinical trial on an approved website. Too dangerous. After all, when it is about your health, one “must be reading the research”. You people are scary. There are some really serious implications to doing this stuff at home.

    What are the serious implications of installing a phone app without waiting for the results of a randomized clinical trial?

  34. Oh, you young people just don’t get it. I remember when phones were black, all installed with wires by one company. It sure was easy. Now all these kids want to get their own phones and do god-knows-what with them. What if they mess up and someone is trying to call them? Then what?

  35. Oh, and you forgot about George Eastman. I am pretty sure he wrote his PhD thesis on the improvements he discovered in photography. What was it? MIT? I am sure there was some connection.

  36.  
Leave a Reply