Of those biobanks addressing these issues, 33%-46% had documents saying they do return some information. Among the 21 NIH intramural biobanks addressing whether they would return information to participants, 7 of these had documents indicating that they would return some information (including GENEVA, the Framingham Heart Study, and the National Children’s Study). Among the 13 other U.S. biobanks sampled and addressing this issue, 6 had documents indicating that they would return some information (including the Personalized Medicine Project at Marshfield Clinic, 23andMe, the University of Connecticut Behavioral Gene Bank, and the Kaiser Permanente Research Program on Genes, Environment, and Health). Table 2, adapted from Johnson, Lawrenz & Thao3 summarizes these findings.
