Medical progress based on sound scientific principles is inherently a good thing.
However, before an experimental medical discovery such as gene therapy is put into practice in human beings, it surely must receive societal approval as well as the customary medical approval. Investigators at the US Food and Drug Administration recently halted a human gene therapy experiment at the University of Pennsylvania following the death of one of the volunteers. A particularly disturbing facet of this tragic episode was the fact that the research institute could not provide the FDA investigators with any proof that the volunteers participating in the fatal study had been adequately warned beforehand of the risks involved. Although one or two of the members are non-scientists, there are generally no provisions for allowing representatives of patients' rights or consumer protection organisations to sit on these committees. The former refers simply to applying one's signature to a document of informed consent.