INTRODUCTION

On October 1, 1988, thirty-five years after co-discovering the structure of the DNA molecule, Dr. James Watson launched an unprecedented experiment in American science policy. In response to a reporter's question at a press conference, he unilaterally set aside 3 to 5 percent of the budget of the newly launched Human Genome Project to support studies of the ethical, legal, and social implications of new advances in human genetics. The Human Genome Project (HGP), by providing geneticists with the molecular maps of the human chromosomes that they use to identify specific human genes, will speed the proliferation of a class of DNA-based diagnostic and risk-assessment tests that already create professional ethical and health-policy challenges for clinicians. “The problems are with us now, independent of the genome program, but they will be associated with it,” Watson said. “We should devote real money to discussing these issues.” By 1994, the “ELSI program” (short for “Ethical, Legal, and Social Implications”) had spent almost $20 million in pursuit of its mission, and gained both praise and criticism for its accomplishments.

In this essay, I offer an evaluation of the ELSI experiment as one example of how society and the scientific community might go about addressing the policy issues raised by scientific innovation. My assessment is drawn from my experience as one of this experiment's principle labtechs and bottle-washers during my tenure as Chief of the ELSI Branch at the National Institutes of Health (NIH)'s National Center for Human Genome Research (NCHGR) between 1990 and 1994.