Embryonic stem cell research should proceed, and Michigan's current restrictive laws should be removed, because these patients deserve the best effort that medical researchers here in Michigan and worldwide can offer. That means allowing science to push forward the way science does best -- creatively, pursuing many paths, able to evaluate new and sometimes unexpected results...Kelch argues that scientific knowledge must soldier on past any ethical restrictions in order to have the maximum number of paths to pursue potentially life saving cures. This attitude parallels the attitude of those involved in one of the worst chapters of American medical history: the Tuskegee Study of Untreated Syphilis in the Negro Male.
At this early stage in stem cell exploration, it makes no sense to abandon any avenue of research, especially if that would delay the life-changing therapies for which people are waiting. (emphasis mine)
For those unfamiliar with this study, allow me a quick historical review. The Tuskegee study started in the 1920s in Alabama in order to study syphilis, an STD effecting as much as 30% of the population. Men with latent syphilis were given aggressive treatment. The treatments at that time were only about 30% effective and were highly toxic.
Although the study began with the best intentions, two events significantly changed that. First, due to the great depression, funding for the treatments was stopped in 1932. At that time, an effort was made to salvage whatever knowledge could be gained by following the men who no longer were being treated for their disease. 400 men with latent syphilis were followed and compared to a control of men without the disease.
The second important event is that by 1947, penicillin was widely available and found to be effective in treating the disease. The researchers had a dilemma; if they gave these patients penicillin they would lose the ability to study the progression of syphilis and possible find a more effective treatment. Although PCN would potentially help the individuals involved, other possible avenues of knowledge would be lost forever. For that reason, they decided to continue to study the course of the disease by intentionally withholding treatment that they knew was effective. The patients did not receive treatment until after the study was stopped in 1972. In other words, a potentially fatal disease was allowed to progress for over 25 years.
There are so many topics covered by this incident (race relations, informed consent, etc.) that it can be easy to overlook important facts. These are not to be missed:
1. This study was not secret. Findings from the Tuskegee study were published in major medical journals. Many, many professional medical practitioners knew about these men who were not being treated.
2. The study was endorsed by the CDC and regional medical associations as late as 1969. An ethics panel from the CDC had all of the information and concluded that the advancement of scientific knowledge that would occur from allowing the disease to continue was worth not treating these men. This study was not the advent of a rogue investigator: it was the consistent application of the theory that scientific knowledge should proceed at all costs, and was endorsed by the medical establishment.
3. The study was motivated primarily as an effort to gain scientific knowledge that would help others. Although we now know that PCN is effective to treat syphilis (it is still the primary drug of choice), we did not know that for sure back in 1947. At least initially, it was thought that by giving these men PCN, an opportunity to discover an even more effective treatment could be lost.
This is getting long, so I'll continue the thought in my next post.