Other Congress papers described variation in attitudes, practices, and assessments of this boundary-blurring. Reed Pyeritz [E-6] addressed the “Duty to Recontact in the Genomics Age,” outlining a broad spectrum of situations that might affect views about the criteria for returning results and/or incidental findings, including: whether genetic variation is likely to be pathogenic; whether a new gene is discovered that either causes or predisposes to a condition for which evaluation was originally sought; whether potentially clinically actionable information is to be returned to the research subjects; and whether abnormalities that were outside the original indication for performing the study are identified. A survey of attitudes and practices of GWAS investigators regarding return of individual results [E-6, Ramoni] documented significant barriers, including uncertain clinical utility, the possibility that participants might misunderstand the information, the potential for causing emotional harm, and the need for access to a trained clinician. While two-thirds of the investigators surveyed believed the return of individual results was justified under certain circumstances, particularly to benefit participants’ health, the vast majority reported that they had no plans to return results.
