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.