Associating Gene Therapy with the Human Genome Project

As is often the case with cutting-edge biomedical technology, the introduction of gene therapy in Japan provoked discussions of ethics and safety while offering little hope for dramatic recovery. Nevertheless, only 5 years after the first authorized clinical trial in the USA, the first Japanese trial was conducted in 1995. This trial event garnered extensive media coverage but yielded little opposition. To understand the public reaction, a range of sources were examined, including news media and popular scientific magazines. In the case of Japan, public acceptance did not mean enlightened consent; rather, it meant that interactions among researchers, the media, and the populace brought about a new interpretation of the technology. Over time, concerns about ethics and danger were replaced by clinical and industrial perspectives. In addition, the suggestion that gene therapy amounted to “playing God” has lost its force, and it has come to be seen instead as a concrete application of the findings of the Human Genome Project. Japan did not experience the rapid backlash against gene therapy that occurred in the USA in the late 1990s (Stockdale 1999a). Among these discourses, this paper places a particular emphasis on those associating gene therapy with the Human Genome Project. This type of association is neither necessary nor inevitable. The first target diseases of gene therapy have been single-gene disorders such as adenosine deaminase (ADA) deficiency and X-linked combined immunodeficiency disease. The genes responsible for such serious diseases had been identified by pioneering researchers before the advent of the Human Genome Project in 1990. The latter aimed to determine the human base sequence, not genes themselves. As was already known, most human diseases are not genetically determined, even though they are affected and controlled by many genes. In Japan, however, there was a perception that the Human Genome Project was a basic research initiative with important applications for gene therapy.