The Belmont Report (1979) was created in order to establish ethical guidelines and principles regarding research experiments. Over the years, studies have come under observation for following questionable ethical guidelines in their studies. One such research study involved experimental gene-therapy, which resulted in the death of 18-year-old Jesse Gelsinger. While the treatment was experimental, the ethics followed by the researchers may have been more questionable than previously assumed, and not in total accordance with the Belmont guidelines. According to the Belmont Report (1979), respect for persons stipulates “that individuals should be treated as autonomous agents, and that persons with diminished autonomy are entitled to protection.”
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As Stolberg (1999) reveals in her article, prior experiments on three monkeys resulted in liver-inflammation and a blood-clotting disorder. These results were most likely not presented to Jesse in his information session. If I were personally to consider entering an experiment, I would need to know the past trial runs and their effects on the subjects. Additionally, Jesse should have been aware that there were varying dosage levels of the experimental vector, and known which group he was to be placed. Jesse was a curious case in that he developed ornithine transcarbamylase (OTC) deficiency, while most are born with the disease. If I were Jesse, I would have asked if the vectors could react differently to someone who developed OTC later in life, rather than being born with the disorder. Considering Jesse was the youngest of the participants, the researchers should have taken extra caution as to the reaction between the youth of the participant, and the high dosage of the vector. I personally would be concerned if my age could influence the effect of the vectors in my body. Overall, while Jesse was a volunteer, and comprehended the information, there seemed to be a lack of detail that may call the ethics of his informed consent into …show more content…
As Stolberg (1999) explores, OTC in its severe form can be an extremely harmful disease; most newborns die in the first two months, and “half of the survivors die by age 5.” Thus, many have looked at the ethics of using these terminal infants as test subjects as opposed to adults. The researchers concluded that it would be unethical due to the parent’s incapability of giving the necessary informed consent (Stolberg 1999). Overall, I understand the value of informed consent, and the researchers’ decision not to use the infants. However, I also believe the matter should be a choice left up to the parents. A main goal of all research is to not to cause harm. In the current trials of treatment for adults with OTC, harm is being done. Other results have come to light that similar gene-therapy research trials have also been causing negative effects to their subjects (Stolberg 1999). I do not believe infants should be the main subjects of these studies; however, when looking at the concept of justice, it may be unfair that adults involved in gene-therapy tests are bearing the complete burden of negative effects. While informed consent is a crucial matter in research studies, I believe the option may at least be presented to the parents. Perhaps a particular type of experiment may be the study that creates a breakthrough for those with
As Stolberg (1999) reveals in her article, prior experiments on three monkeys resulted in liver-inflammation and a blood-clotting disorder. These results were most likely not presented to Jesse in his information session. If I were personally to consider entering an experiment, I would need to know the past trial runs and their effects on the subjects. Additionally, Jesse should have been aware that there were varying dosage levels of the experimental vector, and known which group he was to be placed. Jesse was a curious case in that he developed ornithine transcarbamylase (OTC) deficiency, while most are born with the disease. If I were Jesse, I would have asked if the vectors could react differently to someone who developed OTC later in life, rather than being born with the disorder. Considering Jesse was the youngest of the participants, the researchers should have taken extra caution as to the reaction between the youth of the participant, and the high dosage of the vector. I personally would be concerned if my age could influence the effect of the vectors in my body. Overall, while Jesse was a volunteer, and comprehended the information, there seemed to be a lack of detail that may call the ethics of his informed consent into …show more content…
As Stolberg (1999) explores, OTC in its severe form can be an extremely harmful disease; most newborns die in the first two months, and “half of the survivors die by age 5.” Thus, many have looked at the ethics of using these terminal infants as test subjects as opposed to adults. The researchers concluded that it would be unethical due to the parent’s incapability of giving the necessary informed consent (Stolberg 1999). Overall, I understand the value of informed consent, and the researchers’ decision not to use the infants. However, I also believe the matter should be a choice left up to the parents. A main goal of all research is to not to cause harm. In the current trials of treatment for adults with OTC, harm is being done. Other results have come to light that similar gene-therapy research trials have also been causing negative effects to their subjects (Stolberg 1999). I do not believe infants should be the main subjects of these studies; however, when looking at the concept of justice, it may be unfair that adults involved in gene-therapy tests are bearing the complete burden of negative effects. While informed consent is a crucial matter in research studies, I believe the option may at least be presented to the parents. Perhaps a particular type of experiment may be the study that creates a breakthrough for those with