Lack of Research Ethics: Lessons from Tuskegee & Guatemala

Last month, I attended a lecture given by Dr. Susan Reverby, Escaping Melodrama: On Telling the Histories of the Infamous U.S. Medical Research Studies in Tuskegee and Guatemala.  Reverby has devoted a great deal of scholarly work to these clinical trials that are infamous for their lack of research ethics.

source: http://www.sbs.com.au/dateline/story/about/id/601221/n/Infected

A quick timeline for reference:
1932 Tuskegee study begins
1943 Penicillin discovered as effective treatment for syphilis
1946-1948 Guatemala study
1972 Tuskegee study ends
1997 Apology from Pres. Clinton for Tuskegee
2010 Apology from Pres. Obama for Guatemala


Tuskegee is well-known as the longitudinal study where African-American men affected with what they called "bad blood"  were deceived with false promises of treatment as researchers followed the natural history of syphilis progression.  Dr. John Cutler was one of the primary investigators who, despite questions that began to be raised in the 1950s regarding the ethical issues surrounding this trial, continued the trial for decades and published the reports on "Untreated Syphilis in the Male Negro", which are publicly available here.  Reverby examines several aspects of this unconscionable study in her book, Examining Tuskegee.

But the story doesn't end there.  Dr. Cutler took his negligent research practices overseas in a study performed in Guatemala that was only recently discovered, by Dr. Reverby.  This "study" was based on the premise of infecting vulnerable individuals - sex workers, institutionalized patients, prisoners, orphans, etc. - with STI's such as syphilis, gonorrhea, and chancroid.  For some, genitals were abraded and inoculated.  In other instances, sex workers were infected by the investigators (as just described) and sent to prisons and the barracks to infect unknowing men.  Clearly, informed consent was not a part of the process (very much reminiscent of Tuskegee, no?).  Not surprisingly, this study was never published, likely due to the fact that it was obviously unethical and a poorly organized trial, to boot.

[Video on Guatemala experiment] 

So why do governments in underdeveloped countries turn a blind eye to research like this?
Some have highlighted the negative implications of practicing stringent bioethics abroad -- that the more restrictions are imposed on research studies abroad, the more obstacles are placed in the way of medically underserved individuals taking advantage of possibly their only opportunity for medical care.  So sometimes ethically problematic research is allowed to take place in resource-poor countries because it may be their only access to treatment.  But if we lower the bar for the standard of care and informed consent for citizens of underdeveloped countries, where do we draw the line?

The amazing thing is that even decades after these Tuskegee and Guate, Dr. Cutler defended his work to the very end:
"We were in a war against syphilis, and in a war, people die."

Horrifying, isn't it?  Thanks to the work of Reverby's and others like her, increased public awareness fosters a moral outrage that can lead to policy change, and also foster attitudinal change amongst researchers so these types of human rights violations do not continue.

Let's not stand idly by.  Get angry and spread awareness to prevent these atrocities from continuing to occur in vulnerable communities around the globe.