Access to the Genome: Justice at the Frontier of Science

This project will examine the issue of affording access to the technologies that are expected to emerge from the Human Genome Project (HGP). The potential impact of these technologies on the fate of individuals, families, and ultimately, the species itself, will make the question of who is given access to them highly controversial. By matching the characteristics of these new technologies as closely as possible to technologies that currently exist, this study will project the degree of access to these genetic services that would result if access were governed by the principles of distributive justice currently embodied in major public health care programs. It will then compare this result with the patterns of access that would emerge from the application of alternate models of distributive justice. The study will conclude with recommendations for how access to these new technologies can best accomplish the goals of distributive justice.