Lucky Green: | My partner is a participant in a long term psychological study. I have been | asked to fill out a questionnaire to aid in this study. Some of the | questions address issues that I would never answer non-anonymously. After | speaking with the research director, I ended up with the following problem: | is there a way that would allow the institute to | | 1. Correlate my answers to the answers of my partner. | 2. Verify that I have indeed sent in a filled out questionnaire (and send | me a check for participating). | 3. Allow a supervisory agency, such as the U.S. Department of Health and | Human Services, to verify that the researchers did not just make up all the | data - that is to allow an audit. | 4. Protect my privacy by making it impossible to correlate my name to the | answers given. | | I would very much like to help to advance medical knowledge, but am | concerned what might happen once the institute is forced to hand over all | accumulated data to the Kommunal Kare Kontrol Kommittee under the Health | Care and Crime Prevention Act of 1998. Correlation is easy; assign people consecutive numbers or somesuch. If both participants are anonymous, no problem. Could you bring by the questionnaire by hand, in exchange for cash? If not, how about a money order and a PO box? The audit part of this is the tough part. Would the HHS care to agree to a broadcast means of verification? Would participants 44, 71 and 94 please come into the re-testing center to verify their participation? There could be a zero knowledge proof of some type to demonstrate that you are really patient 94. I doubt that the HHS would be agreeable to that. Might want to phone your local ACT-UP chapter, if you have one. AIDS activists tend to be privacy nuts, and they may have protocols for anonymous testing/surveys. Adam