To set the stage for discussion in the third panel session, John Mendelsohn, Forum chair, highlighted some of the key needs identified thus far in the speaker presentations. One main area of concern was the collection, structure, storage, and analysis of big datasets, including the need for interoperability and standardization of systems. In addition, observational research requires that the data be de-identified and pooled. Mendelsohn noted that the more technical issues of computer power, software, and interconnectivity did not seem to be major concerns.
Another main area of discussion was data scrutiny and use, which are affected by ethical and social issues more than scientific issues. Key issues raised by individual participants were patient privacy and trust. Many stakeholders need or want access to the data, including patients themselves, investigators, universities, pharmaceutical companies, the government, and others. There are questions of whether there is ownership of the data and, if so, by whom.
With these needs and concerns in mind, panelists discussed a variety of approaches for moving the field of cancer informatics forward.
Atul Butte, chief of the Division of Systems Medicine at Stanford University and Lucile Packard Children’s Hospital, shared examples of how public data can drive science and enable personalized medicine. There are tremendous volumes of data already in the public domain. For example, a DNA microarray or “gene chip” can quantitate every gene in the genome. This high-throughput genome technology is now widely used in research laboratories and has led to massive volumes of microarray data. One of the repositories tasked with holding these data is the National Center for Biotechnology Information (NCBI) Gene Expression Omnibus (GEO). This United States–based repository currently contains more than 625,000 publicly available microarray datasets. Together with a comparable European repository, there are more than 900,000 microarray datasets in the public domain. At the current pace, the content doubles every 2 years (Butte, 2008).
Data generation has been commoditized, Butte said. He offered the example of Assay Depot, an online marketplace for scientific research