could be funded both through grants, perhaps from a private funder, and through a small fee for the use of curated data at a national or an international level, Greely said.
Heidi Rehm of Partners HealthCare pointed out that the way to reduce errors in databases and in interpretations is to generate much more data so that results are more statistically significant. Furthermore, different kinds of models may exist simultaneously. There may be a role for databases with limited access for a small group of contributors who are willing to curate data at a much higher level, for example, or different levels of curation could be performed on an individual, an expert panel, or a professional guidelines level. “There are a lot of ideas we have to work through to figure out how to do this,” Rehm said.
Boguski recommended that the field move away from literature-based curation efforts because of the large number of errors and bias in publications. Instead, he suggested carrying out a large-scale sequencing effort that would re-compute all gene–disease associations from scratch once sequencing costs are low enough to do so.
Several of the panelists discussed whether the National Center for Biotechnology Information (NCBI) is an appropriate organization to maintain a genomic database. Rehm observed that NCBI has not had much experience with clinically curated environments, but she said that it “has done an amazing job at providing resources in real time to the community, and we should leverage that.” Boguski countered by noting that NCBI is not a health care delivery organization but rather a library that stores archival data that people use infrequently. “Working in a place where you see patients being wheeled past you on gurneys everyday is different than sitting at a data center somewhere and making decisions” about what is clinically relevant data, he said. Michael Christman of the Coriell Institute for Medical Research said that the data likely will end up residing in multiple places. What is important, he said, is that data have the equivalent of an audit trail so that it is possible to keep track of who sees data when and for what purpose. People may be reluctant to have a for-profit entity house their data, he said, although as Hegde pointed out, many clinical laboratories would be willing to pay a fee to get access to it. The problem is not who houses the database but rather who is going to curate it and whether the database is clinically validated.
Greely observed that an international organization that is not funded or run by any one country may have advantages, especially since countries like China are making significant investments in genomic research. Rehm added, however, that international projects often struggle with differing laws concerning what data may be put in a public environment. Bruce Korf of the University of Alabama at Birmingham asked whether a collaboration of professional societies could play a role, since that is where many of the