Sharing data with personal information through SND
Datasets containing personal information may only be documented and shared through SND’s research data catalogue if your organization and SND have an agreement for this. The organizations that have agreements for sharing are listed below. If your organization does not have an option for sharing datasets with personal information through SND, you need to ensure that data are anonymized before you describe and share them. You can read more about anonymization here.
Datasets that contain personal information may not usually be shared openly in SND’s research data catalogue, but should be shared with restricted access. Restricted access implies that the data description is visible in the research data catalogue, but that access to data is provided only after a request to access the material has been reviewed and approved.
When describing a dataset in DORIS, SND's documentation tool:
- Specify the level of accessibility the dataset should have.
- For sensitive data – data that should not be freely accessible – select “Access to data is restricted”.
- Mark if the data contain personal data or other sensitive information. Also state the type of personal data/sensitive information.
- Documentation files are always freely accessible in the catalogue entry and should not contain personal data or other sensitive information.
Option to share sensitive data with restricted access
Researchers in the following organizations have the option to share research data with personal information through DORIS and SND's research data catalogue:
- University of Gothenburg
- University of Gävle
- Halmstad University
- Jönköping University
- Karolinska Institutet
- Luleå university of technology
- Swedish Polar Research Secretariat
- Stockholm University
- Swedish University of Agricultural Sciences
- Uppsala University
All organizations utilize DORIS for documenting datasets, but they have different internal solutions for handling the actual data files. When you have started a data description in DORIS you can send a message to your local data support unit, who can direct you as how to proceed.
Storage of data
Legally, SND never becomes the personal data controller for data shared via SND, regardless of whether the data are uploaded in DORIS or by other means. Protected data are either in a storage location under the control of the responsible organization, or the organization has established a personal data processing agreement with SND for the storage of files at SND.
Things to consider when sharing research data that contain personal information
It is always important that data are described and documented in detail. For datasets with restricted access, it is especially important that good documentation is openly accessible. Documentation is central to determining whether a dataset is suitable for a particular use. For example, information about questions asked in surveys, variables measured in field studies, or geographic areas covered by a dataset are things that should be included in the data description or in a documentation file.
As a rule, data files that are intended for reuse should not contain personal names or other direct identifiers. When there are direct identifiers associated with the data, the dataset prepared for sharing should be pseudonymized. This means that potential identifiers in data files are replaced with a code or a serial number. Identifiers are stored in a so-called code key. The code key should be preserved according to archival practice but should not be included in the dataset that is intended for reuse. Please note that pseudonymized data are still considered personal data.
There are also research data that contain personal information that cannot be linked to a code key, for example images or audio recordings. For research data where an interview is recorded and transcribed, it may be appropriate to create a dataset intended for sharing that contains only the transcription, and with all identifiers masked.
No protected information in metadata
It is also important to avoid including protected or personal information in the metadata or documentation files. SND's research data catalogue and associated documentation are always public and descriptions are easily found through a web search. Take extra care to ensure that the metadata description itself does not contain information that could lead to backtracking (e.g., by specifying precise geographic coordinates of residences).