Citizen Scientists

      70 Comments on Citizen Scientists

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.

Share

70 thoughts on “Citizen Scientists

  1. AndreaLynnette

    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.

    Reply
  2. AndreaLynnette

    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.

    Reply
  3. Ron K.

    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.

    Reply
  4. Rebecca Foxworth

    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.

    Reply
  5. Ron K.

    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.

    Reply
  6. Rebecca Foxworth

    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.

    Reply
  7. Nowhereman

    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.

    Reply
  8. Nowhereman

    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.

    Reply
  9. ethyl d

    “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?

    Reply
  10. ethyl d

    “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?

    Reply
  11. Richard David Feinman

    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.

    Reply
  12. Dana

    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.

    Reply
  13. Richard David Feinman

    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.

    Reply
  14. Dana

    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.

    Reply
  15. Exceptionally Brash

    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?

    Reply
  16. Exceptionally Brash

    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?

    Reply
  17. Exceptionally Brash

    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?

    Reply
  18. Exceptionally Brash

    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.

    Reply
  19. Exceptionally Brash

    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?

    Reply

Leave a Reply to Nina Cancel reply

Your email address will not be published.