KANSAS CITY, MO – More than 100 people gathered at the Kauffman Center over the weekend to weigh in on the potential creation of a national biobank. The National Institutes of Health and other federal health agencies are looking at creating a database with the medical information from half a million people. They say collecting people's genetic, environmental and lifestyle information over the course of several years could lead to important research on diseases like diabetes, cancer, and heart disease.
Jonathan Ortmans of the Public Forum Institute facilitated the Kansas City town hall and says attendees wanted to see certain guarantees in place if a national database were to develop.
"I think some of the big issues that came up were related to individuals feeling confident that there was suitable protections in place to ensure that their data wasn't compromised, that there was an appropriate level of understanding between both the researchers doing the study and the participants that might participate in it," Ortmans said.
The Center for Genetics and Public Policy out of Johns Hopkins University organized the Kansas City town forum. It was the first of only five town forums taking place across the country to help inform the National Institutes of Health as to how and whether such a project should go forward.