As organized clinical trials and human research grew, so did the ethical questions necessary. To consider when creating such experiments. Unfortunately, with Gelsinger and the Tuskegee syphilis study. It seems the desire for progress were placed before these ethical considerations. The result being unnecessary human suffering. Even though the Tuskegee experiment affected a large amount of people (there were 600 hundred subjects in total) by far.
Leaders of both experiments made similar mistakes. While the negative impact of these cases are tragic. It is important to look back to them and ensure future research is free of the immoral decisions made. One of the key considerations in ethical research is informed consent, and should be the first and last aspects of an experiment’s guideline to be scrutinized for efficacy and morality. In all cases, it is not enough for a subject to agree to be researched; they must first know and understand exactly what they are agreeing to.
The process, rewards, and risks must all be conveyed to an individual in a way that they can understand, before their consent is considered valid. In addition, coercion of a subject (such as, downplaying risks and offering attractive payment) immediately taints that individual’s ability to make a personal decision, and is one of the many problems present with the Tuskegee experiments. Not only did researchers target a vulnerable population (illiterate, poor, not medically educated, and chosen based on racial bias), the rewards of free health care and meals were glorified and skewed to attract their consent.
In the case of Jesse Gelsinger, the leaders of the experiment failed to disclose the the side effects of the gene therapy on two other patients, and the death of test animals given the treatment. More heinous, the subjects of the Tuskegee experiment were lied to before the start of the experiments (with the “bad blood” myth) and once a suitable treatment was found outside of the experiment. In both situations it is possible that the subjects’ decisions would have been different, if correct and complete information was given to them from the start.
The inclusion of informed consent would have definitely been a starting point in reforming these two ethical catastrophes, but it would also not had been enough. In fact, it can be argued that the very concept of both experiments were flawed from the start, and the research should not have even been conducted. Jesse Gelsinger’s illness was being controlled with diet and medication at the time of the experiment, but he altruistically agreed to the research to benefit infants who would die from the same disorder. Parents of said infants were not asked if they would allow their dying children to be studied, under the assumption that they would decline.
However, the benefit of treating the babies is obvious, not only are they the right subjects for a treatment directed to infants, but if the therapy did go wrong (as it did with Jesse); to put it bluntly: they weren’t going to live much longer either way. The parents should have been surveyed before asking Gelsinger. In the Tuskegee Syphilis experiment, the sole consideration of African Americans as research subjects raises a red flag today, but was unfortunately not seen as a problem in racially segregated 1932 America.
Additionally, the modern treatment for syphilis, penicillin, was found to be an efficient cure without help from the tuskegee study. The contributions to the understanding and treatment of syphilis from the study, if any, pale in comparison to the suffering that came with it. The information gained from human research can be an invaluable resource, but how great is an advancement, really, if it is founded in suffering? To lessen value of human life in the search to improve human life is a grave contradiction, and must be avoided. The sacrifices subjects of the Tuskegee Syphilis study, Jesse Gelsinger, and all those individuals faced with unethical scientific practices have made must not be defiled as future experiments make the same mistakes.
