As clinical trials and human research became more organized, ethical considerations also grew. However, in the cases of Gelsinger and the Tuskegee syphilis study, the desire for progress overshadowed these ethical considerations. As a result, there was unnecessary human suffering. Although the Tuskegee experiment affected a significant number of people (600 subjects in total), both studies’ leaders made similar mistakes. While the tragic consequences of these cases are evident, it is crucial to reflect on them and ensure that future research avoids making immoral decisions.
One of the foremost considerations in ethical research is obtaining informed consent, which should be given primary attention when assessing the effectiveness and morality of an experiment. Merely obtaining a subject’s agreement to participate in the research is insufficient; they must also have a comprehensive understanding of what they are consenting to. This includes being fully informed about the procedures, potential benefits, and possible risks associated with the research prior to granting consent.
The Tuskegee experiments raised multiple concerns, including coercion of subjects and the targeting of a vulnerable population. The researchers employed various unethical tactics, such as downplaying risks and offering attractive payment, which compromised individuals’ ability to make informed decisions. Moreover, the selection process for participants was flawed, as it focused on illiterate, poor individuals who lacked medical education and was influenced by racial bias. Additionally, the rewards of free healthcare and meals were exaggerated to sway subjects into giving their consent. Another example of unethical conduct is seen in the case of Jesse Gelsinger, where leaders of the experiment failed to disclose the side effects experienced by two other patients who underwent the same gene therapy. Furthermore, the experimenters failed to address the deaths of test animals that occurred after receiving the treatment.
The subjects of the Tuskegee experiment were deceived before and during the experiments, as they were provided false information about the “bad blood” myth. Additionally, they were not informed about a viable treatment that was found outside of the experiment. Had the subjects been given accurate and comprehensive information from the beginning, their decisions may have been different in both instances.
The inclusion of informed consent could have potentially reformed the two ethical catastrophes, but this alone would not have been enough. It can be argued that both experiments were fundamentally flawed and should not have occurred initially. Even though Jesse Gelsinger’s condition was being managed with diet and medication before the experiment, he selflessly volunteered to participate in the research on behalf of infants suffering from the same disorder. The parents of these sick infants were never approached for consent to study their terminally ill children because it was assumed that they would refuse.
However, it is evident that treating the infants has clear advantages. Not only are they suitable candidates for an infant-directed treatment, but considering that the therapy could have resulted in negative consequences (as seen with Jesse), it can be straightforwardly stated that their life expectancy was already short. Prior to approaching Gelsinger, consulting the parents should have been done. The Tuskegee Syphilis experiment, which exclusively targeted African Americans as research subjects, is now regarded as a significant concern. Unfortunately, this issue was not recognized as problematic in racially segregated 1932 America. Additionally, the modern treatment for syphilis – penicillin – was discovered to be an effective cure without any assistance from the Tuskegee study. If there were any contributions made by this study towards understanding and treating syphilis, they would be insignificant when compared to the immense suffering it caused.
When studying humans, the knowledge gained can be highly valuable, but it is crucial to acknowledge the ethical aspects. It is contradictory and should be avoided to pursue advancements that cause human suffering. We must not overlook the sacrifices made by individuals involved in unethical scientific practices like the Tuskegee Syphilis study and Jesse Gelsinger when conducting future experiments.
