Human Gene Therapy, the Public, and Public Policy

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Abstract
The public's involvement in the debate over human gene therapy is used to illustrate two points. First, complex bioethical issues often come to the public's attention because of a scandal, in this case the Cline episode; enlightened discussion and public understanding are difficult to achieve under these conditions. Second, even with unfavorable circumstances at the outset, the debate can become channeled into politically responsible institutions which then can develop effective public policy. For gene therapy, four significant forums emerged: the President's Commission's Report Splicing Life, the 1982 Congressional Hearings, the OTA Report, and the RAC's Points to Consider document. Public involvement in the debate over human gene therapy has taken several forms. Public policy relating to emotional issues is seldom established by dispassionate discussion, and this has been true also for gene therapy. Murray points out that serious discussions began in earnest only after the unauthorized Cline experiment. There was also a great deal of rhetoric by Jeremy Rifkin and others. In spite of, or because of, the rhetoric, a reasonable and workable public policy has emerged.

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