These two cases are just a couple out of numerous in the report, which is only one of numerous reports of
unethical clinical testing on the world's least privileged people.
Until now, pharmaceutical companies themselves have acted under cloak and dagger, not telling us just how many test subjects have suffered ill effects, so that we can
stop a headache, or have better sex, or sleep more soundly.
In that sense, we stand to gain huge knowledge from GlaxoSmithKline's recent commitment to publish clinical study
reports from the last 20 years, a move the company is claiming will further transparency, aid future research, and protect patients from misinformation.
But what do the numbers hide?
Clinical study reports describe every aspect of the clinical trial for a new drug, including the number of participants, methodology, analysis, and
conclusions. While releasing this data is a huge step in the intensely competitive and all too secretive pharmaceutical industry, it is researchers, health
care practitioners, and patients who stand to gain. What about the 1 or 50 or 500 test subjects in rural Uganda or the slums of India who the numbers are
"But what about those participants whose health did improve? And either way, these test subjects volunteered for these programs, freedom over your own body
etc, etc." I hear you shouting at your screen. True, there is a chance that test subjects stand to see their health improve. But when people sign up to
participate in drug trials, they are signing up for a casual game of Russian roulette with their health; the stakes are high.
only that, but drug trials do not last forever. Once the period of allotted time for testing ends, the researchers can pack up and head back to
headquarters. What if the illness being cured involves lifelong treatment, such as for HIV/AIDS patients? Indeed, what if the treatment being tested
requires interrupting testing, just to see what happens?
This is what happened in the case of anti-retroviral methodology research in Uganda, Zimbabwe, and
the Cote d'Ivoire cited in the SOMO document. The research, sponsored by a multitude of pharmaceutical research firms including GSK, caused uproar as
patients were separated into two groups -- one group to get continuous anti-retroviral treatment, one to get interrupted treatment with the same drug.
Needless to say, not taking necessary anti-retrovirals took a lethal toll on participants and some died in the process. While we now know that interrupting
anti-retroviral therapy for 12 weeks at a time is a bad idea, participants had to die for this discovery to be made.
So this is where the argument about "free" will comes in. These same participants died because they volunteered to take part in the study,
right? Choice is a tricky concept in developing countries where people and their families are struggling to put food on the table and a roof over their
heads. To what extent do you have a choice about participating when you see an opportunity to feed your starving family, or assist your extended family, or
get treatment for a terminal disease you could never hope to pay for by conventional means? This problem has been documented again and again, particularly
in India, where women are under pressure from their families to participate in trials which carry a greater return than many other potential occupations
for women. With these kinds of life or death pressures, the idea that it is a choice gets fuzzy. It gets even more complicated when you consider language barriers.