Human Subjects Research Protection (OHRP) — The World Privacy Forum filed comments today with the Office of Human Research Protection urging the office to do more to protect the privacy of people who are subjects of research. The comments urge the OHRP to focus more attention on providing privacy-specific training for boards overseeing research, which are often weak in knowledge about the breadth of privacy issues in research. The WPF also voiced its strong support for certificates of confidentiality for research involving human subjects, stating that”nearly all research that involves identifiable health data or other personal data about individuals should have a certificate of confidentiality unless a researcher can state a substantive reason why a certificate is not appropriate for the study.” OHRP will be accepting comments until Sept. 29.

Human Subjects Research Protection (OHRP) — The World Privacy Forum filed comments with the Office of Human Research Protection urging the office to do more to protect the privacy of people who are subjects of research. The comments urge the OHRP to focus more attention on providing privacy-specific training for boards overseeing research, which are often weak in knowledge about the breadth of privacy issues in research. The WPF also voiced its strong support for certificates of confidentiality for research involving human subjects, stating that “nearly all research that involves identifiable health data or other personal data about individuals should have a certificate of confidentiality unless a researcher can state a substantive reason why a certificate is not appropriate for the study.”

National Health Information Network (NHIN) — The National Health Information Network timeline and chronology that the World Privacy Forum maintains has been updated. Materials from the April/May public forum in Dallas are now online and linked, as are key upcoming events regarding the NHIN. Notably, in September the nine existing NHIN trial implementation projects that have been running and exchanging health data in California, North Carolina, New York, and other states are set to be demonstrated in Washington DC. These demonstrations are pivotal for the NHIN and how it takes shape going forward.

Border Crossing Information System, DHS — The World Privacy Forum submitted public comments today to the Department of Homeland Security regarding its proposed Border Crossing Information System. The BCI system would set up a database of all border crossings via car, rail, air and other means, including collecting identifiable data on the activities of American citizens. Information collected includes biographical and other information such as name, date of birth, gender, a photograph, itinerary information, and the time and location of the border crossing. The WPF comments focus entirely on the proposed Routine Uses of the system. As currently written, the DHS proposal contains some Routine Uses that directly contravene the Privacy Act of 1974 and are illegal. Other Routine Uses are overbroad and vague, and still others contravene guidance from the Office of Management and Budget (OMB). One example of an overbroad Routine Use is Routine Use J, which will allow DHS to release data collected for the Border Crossing Information System for hiring decisions or contract awards. This information may be requested by Federal, state, local, tribal, foreign, or international agencies. Another Routine Use, G, impermissibly duplicates and weakens the Privacy Act’s condition of requirement for notice when information is disclosed in certain circumstances.

The World Privacy Forum filed comments regarding DHS’s proposed Border Crossing Information system of records, finding that many of the Routine Uses proposed for the system were impermissible and illegal under the Privacy Act of 1974. The comments focus on the Routine Uses, rather than the system itself.