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fweespee_ch | 9 years ago

> Why are people astonished?

Because politicians keep making promises in regards to privacy that they don't keep in regards to "confidential" information.

Similarly, most of the medical value from such information [e.g. Frequency of X within a given population fitting certain characteristics] would likely deanonymize people.

discuss

order

DanBC|9 years ago

No politician was involved in this decision.

fweespee_ch|9 years ago

http://www.bbc.com/news/uk-16021240

> "All necessary safeguards would be in place to ensure protection of patients' details - the data will be anonymised and the process will be carefully and robustly regulated.

> "Proper regulation and essential safeguards need to be in place when it comes to patients data," he said. "It cannot be done in a way where essential rules are threatened."

The legality of these data sharing laws start off with public promises of anonymization, robust regulation, safeguards, and privacy.

https://www.england.nhs.uk/2014/01/geraint-lewis/

> Amber data are where we remove each patient’s identifiers (their date of birth, postcode, and so on) and replace them with a meaningless pseudonym that bears no relationship to their “real world” identity. Amber data are essential for tracking how individuals interact with the different parts of the NHS and social care over time. For example, using amber data we can see how the NHS cares for cohorts of patients who are admitted repeatedly to hospital but who seldom visit their GP. In theory, a determined analyst could attempt to re-identify individuals within amber data by linking them to other data sets. For this reason, we never publish amber data. Instead, amber data are only made available under a legal contract to approved analysts for approved purposes. The contract stipulates how the data must be stored and protected, and how the data must be destroyed afterwards. Any attempt to re-identify an individual is strictly prohibited and there is a range of criminal and civil penalties for any infringements.

The problem with psuedonymous data is the NHS basically admits it can be used to identify people given sufficient effort.

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That is why people are "astonished" by these decisions. The politician provides the initial promises that imply anonymity, the implementation doesn't provide true anonymity but provides criminal penalties for pulling off the mask, and then the data is handed to enough 3rd parties if such data is leaked its likely impossible to know by whom unless the data was tampered with to provide a per-contract identifier.

I understand this specific decision did not involve a politician but the conversation was why people are surprised. How many people do you think really know the anonymity originally promised became a permeable pseudonym?