The origin of research ethics and the crazy case of the Tuskegee syphilis study

I have recently been completing a course on quantitative methods for social science, due to the fact that my training as a biologist hasn’t equipped me as well as what I would like regarding using methods such as questionnaires to answer conservation problems. I find this branch of science challenging and interesting, as most conservation issues stem from very human issues: their thoughts,motivations and actions. Without a thorough understanding of how to examine the human side of things, we cannot hope to accurately influence a conservation problem. However, I find that biologists are leaving this whole field to social scientists, regarding it as “fluffy” science, something not as solid and robust as measuring bird wings and modelling population dynamics. Only in the last decade have conservationists truly come on board with the need for an understanding of human social systems , but they still need to seek out this knowledge for themselves. It is certainly not something emphasized during my university courses!

Regardless, I find the application of social science techniques incredibly useful and something I will be blogging about frequently in future. There are amazing new techniques being developed for researching illicit use of natural resources e.g. poaching. These utilize statistical techniques within questionnaire planning, to give robust estimates of prevalence of these activities. But I’ll get to that in later posts.

What I want to talk about in this post is research ethics. We take for granted these days that all research has to be performed under ethical guidelines, whether the study involves humans or animals. The main code for using humans in scientific studies comes from something called the Belmont Report. The Belmont Report came into place 1979, which is actually crazily late considering how much modern science of all kinds, still regularly cited today, had been conducted before then. The Belmont report can be summarized as a code to ensure that human subjects in studies should be treated with the three basic principles of respect, beneficence and justice. Respect entails that consent to participate should be voluntary, co-ersion should not be used (e.g. offering large sums for poor people to participate), and consent should be informed.  Beneficence entails that participants should not be harmed: costs should be less than the benefits of the study (both to individuals in the study and to society at large), and that the level of privacy and identification of participants is known to them beforehand. Justice entails the distribution of the costs and benefits of the study, that is, they should be divided equally and reasonably. This ensures vulnerable groups are not exploited.

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This stuff sounds pretty standard right? Things that researchers would automatically do, because they are intrinsically correct?  Nope.  There are specific studies that caused the need for the Belmont report to be brought out, specifically the Tuskegee syphilis study and the Guatemala syphilis study.  Firstly, the Tuskegee study. This study was conducted in Tuskegee, Alabama, between 1932 and 1972 about how syphilis progresses in humans if left untreated.You spot the problem already? Well it gets much, much worse. The sample population used in this study were black males, that were intrinsically vulnerable because of their poverty. Researchers coerced participation by offering not only free medical care to participants but also free burial and meals.They also performed regular spinal taps without anesthetic to monitor the disease. Patients were not told that they had syphilis and were not given penicillin treatment to cure it, after this was validated as a cure in the 40’s. Treatment was even denied to them if they found out they had the disease from elsewhere. Numerous men died over the study, 40 wives contracted the disease, and 19 children were born with it. This sounds like some sort of horror movie, with the villains coming from some backward country with little human rights protection. But no, the villains in this movie were the US Public Health Service. The rub with the Tuskegee study is that it may have originally been slightly beneficial to participate. In the 30’s these men were getting rewards for having a disease that could not be cured at the time. But as soon as the cure for syphilis came out, this study became highly unethical  (as opposed to slightly unethical due to the original problem with coercion of participation) and then continued for another 30 years!

The Guatemalan syphilis study between 1946-48 was performed on a similar premise, by the US health services and Guatemalan health ministries. This study was performed on a wide range of extremely vulnerable patients (1500 people in total), ranging from mental patients to prostitutes, prisoners and soldiers. These people would be completely under the researchers control by their very nature or profession (i.e ordered to participate). But this study takes a much darker turn from the Tuskegee study, in that participants were actively infected with both syphilis and other diseases like gonorrhea without their consent, to see how penicillin worked to prevent such diseases.  They were then left untreated of the diseases. The US government has since apologized for these experiments.

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Apart from the horrific personal consequences of these studies, they also have severe consequences on the level of public trust in scientific studies. Studies today often take ethics for granted, but these extreme examples serve as a reminder that they stem from very real problems in science. The need for flashy significant results was probably a motivation for the Tuskegee scientists as well, and scientists need to be aware that these ethical boundaries put in place are there for a very real reasons. I certainly had no idea that people could push the boundaries of what is ethical quite so far, in the name of advancement of knowledge.

The recent growing phenomenon of distrust in established science such as climate change and vaccines is mainly based on the availability and wide dissemination of fringe arguments with no scientific backing being touted as “science”, thanks to this wonderful tool, the internet. Because science is by nature a gradual accumulation of knowledge, with many revisions and changing of minds, people have started to view it as untrustworthy, especially in topics where people want answers right now. But these revisions are how advancements are made, the flashy “cures”are actually an accumulation of decades of work that didn’t make it into the public eye. Research ethics is important to guide us here as well: as people demand more certainty in answers, scientists may be tempted to ever so slightly change their results to make them seem more certain than they really are. The Tuskegee and Guatemalan studies are obviously when sciences goes wrong, but we need to constantly guard ourselves to make sure it goes right, in all the little ways too.

 

For more info on the Belmont report see:

https://videocast.nih.gov/pdf/ohrp_appendix_belmont_report_vol_2.pdf

For more info on the Tuskegee study see:

http://www.cdc.gov/tuskegee/timeline.htm

 

 

 

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