Precision Medicine: Separating Hype from Hope

The completion of the Human Genome Project in 2003 was heralded as the advent of the age of “personalized” or “precision” medicine. Media reports continually inform us of the discovery of genes for all manner of physical and mental disorders with the implicit (if not explicit) promise that a cure is just around the corner. As the cost of whole genome sequencing has dropped precipitously over the past decade, the hype and hope about imminent genetic discoveries and cures for all manner of diseases will no doubt continue unabated.

For all the hype about precision medicine, however, the actual payoff in terms of a revolution in genetic medicine has yet to materialize. While advances in genetic sequencing technology have led to a veritable explosion in genetic data, the transition from data to information to useful genetic knowledge is proceeding much more slowly. At the same time the mechanisms for managing the ethical, legal and social implications (ELSI) of this emerging technology are struggling to keep up. In this talk we will survey some key developments in gene sequencing technology over the past decade and more recent “gene editing” techniques. We will focus particularly on a number of ELSI issues that are creating speed bumps on the road to precision medicine.