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Updating the Public

At AMP's annual meeting last week, NIH's Cathy Fomous stopped by to give the members an update on the organization's plans for a Genetic Testing Registry — NIH intends the registry, which is voluntary, to be a comprehensive source about all the genetic tests available to the public, she said. After a period of public comment, conversations with stakeholders and partners, and a public stakeholder meeting at ASHG earlier this month, NIH received strong support for the registry from industry and academia, though there were also several concerns, Fomous said. Survey respondents stressed a need to ensure the accuracy of the registry information and were concerned about the potential harm to patients should the information in the registry be inaccurate, incomplete, or misinterpreted. At this point, Fomous said, NIH will be analyzing the comments, convening focus groups on the registry prototype, and developing and beta testing the registry. NIH aims to launch the registry in the spring.