Modern medical research has been around since the early 20th century. Early on it was meant to help scientists not only learn about diseases, but to better help those who suffer from them. In the beginning, there were no formal rules or regulations to protect the health and safety of those who were involved in scientific studies. After World War II, when many medical experiments were done in concentration camps to prisoners like Jews, homosexuals, and gypsies, the Nuremberg Code was created. This Code made sure that everyone who got involved in research (called study participants) did so voluntarily. This meant that for the first time scientists had to let all study participants know what their research was about and any risks or dangers it might have to them. Each research study participant now must sign a form confirming that they have been told exactly what the study is, and that they voluntarily agree to getting involved. This is called, “informed consent.”
However, with the Nuremberg Code in place, participants’ rights were still violated. The most well-known abuse of research participants was during the Tuskegee Syphilis Experiment which began in the early 1930s. The main purpose of this forty year experiment was to show how syphilis changed over time of in African American males.
There were several serious problems with this experiment:
- Not clearly communicating the purpose of the research study with the people who participated in it
- The research participants did not give their consent to be part of the study
- Participants were denied medical treatment even when it was available
The horrible injustices of the Tuskegee experiments were finally brought to the attention government officials and the study was forced to stop. The next step was to create laws and regulations to prevent something like Tuskegee from happening again. Stay tune for our next article on how research volunteers are now protected by the law.