Data Sharing: Perils and Opportunities

Progress in scientific research depends on the free flow of information, and the exchange of ideas and knowledge. Restricting information flow which is the bedrock upon which future studies are dependent can impede the advancement of research. To ensure that future research can build on the foundation of previous efforts and discoveries, the U.S. National Institutes of Health (NIH) has issued a data sharing policy that reaffirms the philosophy of free sharing. The policy expects researchers who are funded by the NIH to make available final research data, especially unique data, for research purposes to qualified individuals within the scientific community. In implementing this policy, NIH is cognizant of the need to protect the privacy of individuals who participate in experimental studies and the confidentiality of data. Data sharing can be accomplished through a number of methods. The most common method is publishing articles in scientific publications. Researchers also share data through an informal channel, by responding directly to data requests. However, when a large amount of data will be shared, an efficient approach is needed, generally through establishing a network of databases. One should recognize that there are challenges to creating successful networks, which may include fundamental differences in informatics infrastructure and communication tools used at various research sites. Solutions will entail standards for data collection, processing, and archiving to allow interoperability among databases and the ability to query data across databases. Sharing of scientific data is an important and valuable goal. Means to overcome technological challenges are needed to achieve this goal