In science, policy and economy, unflattering data get often disregarded. If, as a scientist, your experiment does not support your initial hypothesis, you can do two things: repeat it until it satisfies you and publish it, or acknowledge the fact that your hypothesis may have a flaw. Wise researchers often opt for the second option, and give themselves the time to reason on the experiment data and formulate a new hypothesis.
In some instances, this ‘second option’ is a luxury, it is not applicable or it is deliberately ignored. A well documented problem about disregarded experiment is reported in the drug-developing world of Big Pharma. Pharmaceutical companies spend a luxury amount of money on developing a drug and perform tests on human volunteers to prove their safty and efficacy. But, as brilliantly explained by Ben Goldacre, industry-running trials have the problem of hiding the raw data of their founding, and selectively disclose to drug regulators only those trials that proved their drug was effective.
Best estimations indicates that about half of all clinical trials have not been published.
Medical doctors and patients need a complete pictures of the effects of a drug in order to take fully informed decisions and avoid unnecessary pain. If I disclose to you only half of the results I obtain from flipping a coin, I may convince you that that coins only give you “heads”.
Fact: withholding data do harm patients
Numerous reports point at the gravity of missing trials. One example for all respond to the name of “TGN1412“, an immunomodulatory drug developed by TeGenero. TGN1412 development was hold after an infamous trials that hospitalized 6 volunteers with sever side effects. It turned out later that an academic already tried a very similar treatment and also observed overwelming negative effects in man, but it didn’t report the results. These people suffer would have being avoided if the full information on trials were disclosed.
The problem is big and sufficiently well documented to bring important institution act. Governments, regulators and scientific bodies have tried to force all trials to be registered in a common database before the trial begin. In this case, regardless the results, companies will not be able to hide their existence. So far, these attempts have failed or have being ignored.
This petition calls on governments, regulators and research bodies to implement measures to achieve the registration of all trial and the full report of their results.
Sign up if you think that doctors and patients have the right to see all the facts about the treatment they are prescribing.