The media has often trumpeted the fact that there is a lot of health misinformation and downright quackery on the Internet, but today’s New York Times features a tragic story about a woman whose life might have been saved if medical researchers had only run a Google or other Internet search engine search.
Ellen Roche, 24, died while she was volunteering for a study on asthma being conducted at John Hopkins University. Researchers there wanted to test a theory that in asthmatics signals from the brain telling the lungs to expand get blocked somehow, keeping the lungs constricted.
To test this theory, on May 4, 2001 researchers had Roche inhale one gram of hexamethonium to cause her lungs to constrict. Shortly afterward Roche developed a cough, a runny nose, and fatigue. By May 12, Roche’s lungs were so damaged she had to be put on a ventilator. On June 2, her family gave approval to withdraw Roche’s life support and allowed her to die.
Of course it is standard procedure when designing a test like this to do a literature search for background information on the drug, but the researchers’ literature search turned up no studies on the risks of hexamethonium to lungs, even though a Google search turns up plenty of links to 1950s-era studies indicating problems with the compound (which was originally used to treat high blood pressure before being abandoned).
The third link that comes up, for example, is a bibliography of papers on the drug with titles like, “Hildeen T, Krogsgaard A R. Fatal pulmonary changes during the medical treatment of malignant hypertension. Lancet 1958; ii: 830-832.”
The review board that approve the experiment claims the 1950s studies wouldn’t have changed anything, which might be true but only because the review board failed to come close to fulfilling its due diligence to do a thorough review.
In fact so many different things were done illegally in this case, that when Roche’s family eventually wins the inevitable lawsuit against John Hopkins, hopefully administrators there and at other research facilities will get the message that skimping on review boards is lousy ethics and lousy economics.