Jesse's Intent
From The Embassy of Good Science
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Jesse's Intent
What is this about?
This factual case describes the story of a teenage boy who died during a clinical trial in which a gene therapy for a rare metabolic disorder was tested. The story is told in great detail from the perspective of the boy's father. Following his son's death, he discovered that the researchers leading the trial had conflicts of interest and that he and his son were not properly informed of the risks of the trial.
Why is this important?
Participants of clinical trials must be well informed of the risks they are taking by participating in the trial, especially when the treatment under investigation is a non-therapeutic intervention. In these cases, the benefits should outweigh the risks, which was not true in the tragedy described here: adverse effects were reported in previous cases, whilst no efficacy of the gene therapy was observed in humans. As noted in the article, the trial most likely progressed regardless of these risks due to the principal investigator's conflicts of interest and faults by the responsible regulatory institutions. Therefore, this case is a prime example of how conflicts of interest may seriously harm the health of patients and trial participants. To prevent unnecessary deaths in the future, it is important to keep these stories in our collective memory and learn lessons from them. The detailed account presented here may help us do just that.
For whom is this important?
ResearchersAcademic institutionsAll stakeholders in researchResearch Ethics CommitteesClinical researchers
