Public Access to Genome-Wide Data: Five Views on Balancing Research with Privacy and Protection
Connotea Imports 2012-07-31
"Just over twelve months ago, PLoS Genetics published a paper demonstrating that, given genome-wide genotype data from an individual, it is, in principle, possible to ascertain whether that individual is a member of a larger group defined solely by aggregate genotype frequencies, such as a forensic sample or a cohort of participants in a genome-wide association study (GWAS). As a consequence, the National Institutes of Health (NIH) and Wellcome Trust agreed to shut down public access not just to individual genotype data but even to aggregate genotype frequency data from each study published using their funding. Reactions to this decision span the full breadth of opinion, from “too little, too late—the public trust has been breached” to “a heavy-handed bureaucratic response to a practically minimal risk that will unnecessarily inhibit scientific research.” ...We received several submissions on this topic and decided to assemble these viewpoints as a contribution to the debate and ask readers to contribute their thoughts through the PLoS online commentary features."