In the Washington Watch column in the May 2013 issue of the journal BioScience, Eve McCulloch explores the balance between patient privacy and scientific progress in genome sequencing.

The complete article is now online at The following is an excerpt from the report:

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.

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