Genomic Research and Human Subject Privacy

Abstract

Public genetic sequence databases are a critical part of our academic biomedical research infrastructure. However, human genetic data should only be made public if we can adequately protect the privacy of research subjects. Individual genomic sequence data (such as SNPs) are quite "identifiable" using common definitions, while our efforts to understand disease susceptibility or therapeutic opportunity require access to large genomic data sets. The authors of this Policy Forum argue that surprisingly small amounts of genomic sequence data are identifiable. Therefore, the special privacy challenges posed by genomic data need to be addressed with new policies or creative technical approaches.