The Research Data Centers (RDC) program of the U.S. Census Bureau’s Center for Economic Studies is one promising model for enabling knowledgeable researchers working outside a data collection agency to access otherwise confidential respondent-level information. This increases the research value of data that has already been collected and provides feedback from the research community to the bureau about its data products.
There are currently seven regional centers: in Ann Arbor, Michigan; Boston, Massachusetts; Berkeley, California; Chicago, Illinois; Durham, North Carolina; Los Angeles, California; and Pittsburgh, Pennsylvania. Access to the data is strictly limited to researchers and staff authorized by the Census Bureau. The computers in the RDCs are not linked to the outside world. Researchers must conduct all of their analyses within the RDC, may not remove confidential data from the RDC office, and must submit output to Census Bureau personnel for disclosure review prior to removal from the RDC. In establishing these centers, university-based researchers, sometimes in collaboration with other local-area research groups, submit detailed proposals for setting up a secure computing facility that meets strict Census Bureau requirements. Researchers interested in using the centers submit proposals that must be approved by both the RDC and the Census Bureau and are required to obtain special sworn status from the Census Bureau. Approved researchers are subject to the same legal penalties as regular Census Bureau employees for disclosure of confidential information.
For additional information, see http://www.ces.census.gov/ces.php/rdc.
persistent organic pollutants—Burse, DeGuzman, Korver, Najam, Williams, Hannon, and Therrell, 1997).
In addition, it would be possible for an investigator to approach families several years after a baby’s birth to obtain permission to use identified samples to conduct a retrospective study of a toxic agent to assess the body burden at the time of birth. In this case, presumably the family could make an informed decision about the merits of the study and the risks to the child, if any, of making this determination. It is likely that interest in conducting such retrospective analyses will grow with the further sophistication in understanding of biological mechanisms of gene-environmental interaction.
What is much less clear is whether it is ethical to ask parents for consent to use their baby’s biological samples for open-ended purposes at the time of the infant’s birth, since it is not clear what the implications are for future risk to the child of information that might be obtained at a later point. For example, if genes are identified that are associated with increased risks for antisocial behavior,