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.
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 domains. Castellum automatically creates a new domain for each study. There can be more than one domain per study as well as general domains that are not connected to studies at all. You can think of domains as “coding lists” that are handled by Castellum in the background.
Pseudonyms are only unique (and therefore useful) in the context of a domain. Whenever you use a pseudonym, make sure that it is clear which domain it belongs to. If in doubt, store the domain along with the pseudonym.
It is up to you to decide on a granularity of domains. For example you could use a single domain for all bio samples. Or you could use separate domains 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.
Using pseudonyms from general domains
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 pseudonyms from a general domain.
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.
It is possible to delete a domain 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 domain 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 produces alphanumeric strings with 20 bits of entropy and two checkdigits that are guaranteed to detect single errors. It is also available as a standalone package.