see Preferences for opt-in and opt-out enrollment and consent models in biobank research: a national survey of Veterans Administration patients
Research teams planning large, prospective cohort genetic studies may benefit from the experience of the Veterans Affairs (VA) health-care system, which reports in this issue that more veterans prefer to be explicitly asked to participate. The survey of 451 veterans found that half had no preference between opting in or opting out of the planned Genomic Medicine Program, an ambitious project aiming to enroll 1 million veterans in a database that will include genetic, clinical, and environmental-exposure data. Of those who did express a preference, 29% chose the opt-in model and 14% chose the opt-out model. The researchers report that preference for the opt-in model seemed to be related to a desire simply to be asked rather than to have more control over their blood and tissue samples. When the authors looked specifically at the answers from various ethnic groups, they found that the opt-out model could result in underrepresentation of certain demographic groups, including Hispanics and younger veterans. The VA began recruiting veterans in January 2011 using an opt-in model and plans to compare its recruitment results with those expected based on the survey data. —Karyn Hede, News Editor
