from 12:00 PM to 01:00 PM
Coevolving consent and data access policies with human genomics
Greg Copenhaver, Ph.D.
UNC Chapel Hill
We can now interrogate collections of whole individual human genomes quickly, relatively cheaply and with high accuracy. Sequencing technologies have been developed hand-in-hand with sophisticated analytical methods that enable us to understand human genomic variation which in turn unveils information about relatedness, disease etiology and population genetic architecture. This powerful duo of technology and analytical tools has revolutionized human genetics to an extent that is difficult to over-emphasize. Human geneticists, and more recently genomicists, have long recognized that the collection, use and dissemination of human genetic information requires careful ethical consideration and adherence to community-wide policy standards. Nonetheless, the pace with which novel, powerful genomic analysis tools are being developed is often outpacing the parallel development of policy standards. This talk will focus on two policy domains - consent and data access in scientific publishing.