Pseudonyms
Scientific data should never be stored with a subject’s name. Instead, Castellum provides pseudonyms that can be used to link the data back to the subject. Anyone who wants to get in contact with a subject should have to go through castellum.
Warning
Traces of contact data can also exist in the systems that are used for communication, e.g. email servers or payment providers.
A subject can have many different pseudonyms in different pseudonym lists. Castellum automatically creates a new pseudonym list for each study. There can be more than one pseudonym list per study as well as general pseudonym lists that are not connected to studies at all. You can think of these pseudonym lists just as paper lists with names and pseudonyms, except that these lists are handled by Castellum in the background and you never get to see the complete list.
Pseudonyms are only unique (and therefore useful) in the context of a pseudonym list. Whenever you use a pseudonym, make sure that it is clear which pseudonym list it belongs to. If in doubt, store the identifier of the pseudonym list along with the pseudonym.
It is up to you to decide on a granularity of pseudonym lists. For example you could use a single pseudonym list for all bio samples. Or you could use separate pseudonym lists for blood, saliva, stool, ….
Using study pseudonyms
Whenever you collect data in the context of a study, it should be stored with a study pseudonym. Pseudonyms can also be printed on questionnaires or passed to external survey services.
Relevant guides:
Todo
attribute export
Using pseudonyms from general pseudonym lists
Central repositories (e.g. for bio samples or IQ scores) often store data that is not related to a specific study. In these cases, you can use a general pseudonym list.
Because these pseudonyms are the same across all studies, access to them is highly restricted. Both the user and the study need to be authorized before it shows up in list of pseudonyms.
Relevant guides:
Deleting pseudonym lists
It is possible to delete a pseudonym list and all related pseudonyms. Once a pseudonym is deleted, it is no longer possible to find the corresponding contact information. Note, however, that additional steps might be necessary for full anonymization of scientific data (e.g. image data).
The date when a study pseudonym list should be deleted is usually defined in the ethics application and the study consent form.
How pseudonyms are generated
Castellum generates random pseudonyms and stores them in a database.
An alternative approach for generating pseudonyms would be to calculate an encrypted hash over immutable, subject-related information (e.g. name, date of birth). That approach would have the benefit of not relying on a central infrastructure to store the pseudonyms. However, in cases where such a central infrastructure with strict access control is feasible, Castellum’s approach is much simpler. For more information on these two approaches, see Anforderungen an den datenschutzkonformen Einsatz von Pseudonymisierungslösungen (german).
The algorithm that is used to generate pseudonyms can be configured. The default algorithm uses digits and uppercase letters. In order to avoid mixups, the letters “O”, “I”, “S”, and “B” never appear in a pseudonym. When a user enters those letters, they are automatically replaced by “0”, “1”, “5”, or “8” respectively. Single typos are guaranteed to be detected. This algorithm is also available as a standalone python package so you can validate pseudonyms in your scripts and pipelines.