As some of you know I run a web site

www.parkinsonsmeasurement.org

which is there to collect and data mine Parkinson's data. This is how we deal with some of the issues raised by Bob.

1. All raw data, with the exception of security data, is open to anyone to download.

2. User names are hidden to all but the user him/herself, and are replaced by randomly generated numbers.

3. No personal details except those directly relevant to Parkinson's are collected.

There is a tension between privacy and the usefulness of the data. I will give two exmples.

Date of birth. Knowing when a person was born is clearly critical for research. But knowing this to the exact day of birth narrows the source of the data considerably. The policy at parkinsonsmeasurement is to store month and year of birth, but not day of birth.

Address. The policy at parkinsonsmeasurement is not to collect this information at all. Clearly, this limits the sort of questions that we can answer.

John