The Genome Sequencing and Privacy Report: A Missed Opportunity

Abstract

It has been over 10 years since the first human genome sequence was completed and, since then, the holy grail of genomics has been the ability to perform fast, cheap, and accurate whole genome sequencing. For researchers, whole genome sequencing (WGS) provides important insights into the role of genes in disease. For clinicians, among other things, WGS is an essential part of the emerging field of personalized medicine.

Keywords: Whole genome sequencing, privacy, genetic research, clincal genetics, presidential commission for the study of bioethical issues, GINA

JEL Classification: K32, K31