Balancing Privacy and Progress: Biobanks and Genome Sequencing

Genome sequencing coupled with medical and personal data holds enormous promise for unraveling the mysteries of the human body and advancing disease treatment. Increasingly, research projects are collecting data on large numbers of people to determine links among diseases, lifestyle, environment, and genes. The biobanks being created with these data raise questions about protecting the privacy of individuals whose DNA and medical records fuel research. Repositories of human genetic material emerged more than a decade ago in Iceland with the company deCODE genetics. The United Kingdom has created a biobank with 500,000 enrolled volunteers. In the United States, researchers at Kaiser Permanente have revealed early findings based on a treasure trove of genetic and medical data collected from 100,000 Californians. This effort, establishing perhaps the largest biobank in the United States, has already shown new links between disease traits and genetic variants. "One of the things that is becoming obvious is that genomes are far more variable from individual to individual than we thought even 5 years ago," said Joshua Meyer, a postdoctoral researcher at Oregon Health and Science University, where he works on chromosomal rearrangements with potential applications in cancer research. "Mapping those variations is really important if we are going to realize the medical dream of personal genomics." The emergence of low-cost genome sequencing is opening doors across many fields of res...
Source: Washington Watch - Category: Biology Authors: Source Type: news