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Thursday, October 09, 2008

Autoexperimentation for Prizes and Profit

As a scientist, sometimes, you have to take matters into your own hands.

Or into your own arm, and occasionally, your own heart.

Autoexperimentation is the very risky practice of wildcat science. If you can’t find an animal model for a virus, inoculate yourself. If you can’t find a volunteer, step up.

Several autoexperimenting scientists have won the Nobel Prize.

Nobel Hearts

Werner Forssmann won the Nobel in 1956 for performing the first cardiac catheterization. In 1929, he hog-tied his assistant to an operating table to prevent him from intervening, inserted a urethral catheter into a vein in his own arm, threaded it 65 cm into the right atrium of his own heart, then walked down a flight of stairs to the radiology department of the hospital in which he was employed to have a confirmatory X-ray taken, showing the catheter indeed lodged in his own heart.

It’s What’s Eating You

Barry J. Marshall and J Robin Warren also won the Nobel Prize in 2005 for their work on Helicobacter pylori, the bacteria that causes ulcers.

Before Marshall and Warren’s work, ulcers were thought to be caused by stomach acid and stress. As I was told by more than one doctor: “it’s not what you’re eating, it’s what’s eating you.”

As it turns out, what was eating me was Helicobacter pylori.

(By some coincidence, the doctors were wrong on both counts: it was also what I was eating. See the blog:

Marshall and Warren had great trouble publishing their seminal, well-researched, statistically relevant paper in any journal. Even the tabloid rag of the science world, The Lancet, was leery and delayed publication of their work because it contradicted medical dogma on many levels.

Marshall, frustrated with his lack of success in developing an animal model for H. pylori infection and the procrastination of publishing his results, swallowed a concentrated culture of the bacteria. After five days, he got sick, very sick, with gastritis and vomited acid-free gastric juice.

His wife demanded he get antibiotic treatment or else he would be “evicted from the household to sleep under a bridge.”

His tactic worked, and the paper with Marshall’s human trial data on himself was published and later widely confirmed.


Some autoexperimentation, however, has been fatal.

In 1885, a medical student named Daniel Carrion, determined to prove that “Peruvian warts” disease was caused by bacteria rather than bad water as commonly thought, inoculated himself with the blood a sick person. He died of the deadly disease a few weeks later.

His death accelerated research into the dread disease, and he is still a heroic figure in Peru, albeit a tragic one. The disease, bartonellosis, is also known as Carrion’s Disease.

Using Kids as Guinea Pigs

Some people experiment upon their own children.

When their son was diagnosed with ALD, adrenoleukodystrophy, a fatal disorder, Augusto and Michaela Odone studied biochemistry because all ALD treatments available at the time were ineffective. They formulated a treatment, a combination of the triglyceride forms of oleic and erucic fatty acids, for their son Lorenzo and tried it while doctors begged them not to, culminating in the famous line from the movie: “And nobody can tell me what dressing I put on my kid’s salad, OK?”

While clinical studies’ results with Lorenzo’s oil are contradictory, some parents have found that it delays onset of symptoms. Lorenzo Odone lived twenty years longer than is average for ALD patients.

Some people are currently experimenting on their autistic children as, like the Odone’s experience, standard treatments for autism appear less than effective. A massive array of drugs, chelation therapies, nutritional interventions, and special diets (usually elimination) have been compiled here, the cumulative result of thousands of individuals’ experiences.

Note that these results are not the results of double-blind clinical studies. However, many therapies in this list have been found by these anecdotal compilations to be ineffective (like Klonapin, an anti-seizure drug,) or downright harmful (like amphetamines,) so beneficial results cannot be entirely chalked up to placebo effect.

“Not My Kid.”

However, not every doctor or scientist with a bright idea rolls up his own sleeve or his child’s to dedicate his body to science. Edward Jenner, renowned as the “father of smallpox vaccination,” a vaccination that has saved millions of lives and exterminated the terrible virus itself in the wild, dedicated his life, money, and reputation to promoting the use of the cowpox vaccine for smallpox.

However, in 1796, when Jenner had his flash of genius, he did not roll up his own sleeve, scratch his own skin, and smear on some pus from a suppurating cow udder, nor did he risk a family member. He enrolled the child of a peasant family, James Phipps, in his clinical trial of n=1 to test his possibly lethal technique.

Someone had to go first, but it wasn’t someone from Jenner’s family.

TK Kenyon
Author of RABID: A Novel, a novel of autoexperimentation, unwitting guinea pigs, and green-glowing rabies virus, and CALLOUS: A Novel, a story about free will, neuroscience, fate, the nature of memory, and the End of Days.

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