DARIS does everything possible to provide open and easy access to data, while at the same time protecting the confidentiality of research participants and the rights of the data depositors. We rely on a combination of basic anonymisation techniques (e.g., taking out identifying variables), access eligibility criteria, informed consent among study participants, and end-user contract conditions as a way of ensuring confidentiality. Our practices are in accord with Swiss federal data protection laws.
Protection of quantitative data
Data anonymisation. As a general rule, DARIS will only give access to datasets that have been anonymised by removal of variables that could allow identification of individual participants. This includes direct identifiers, such as name and address, as well as other variables that could potentially be crossed with others to allow individual identification, such as commune crossed with occupation. However, under exceptional circumstances and following certain strict conditions, DARIS will provide access to datasets that include more sensitive variables, if a compelling case can be made for why this would be required for analytic purposes.
Access eligibility criteria. We will provide access to quantitative data only to individuals affiliated with a research institution (e.g., a university or university of applied science), although researchers from outside of this system can apply for access. Such outside requests are carefully vetted.
End-user contract. Researchers may gain access to datasets only after signing an agreement to use and cite the data in a proper fashion, for scientific research and education within an academic framework, and following typical scientific ethical norms of conduct. Click here to see an example of our standard end-user contract.
Protection of qualitative data
Informed consent and anonymisation. DARIS will only release non-fully anonymised qualitative data (audio, video, images, transcriptions) if there has been informed consent by study participants for their data to be used for research purposes. DARIS will in principle, however, give access to fully anonymised text transcriptions without informed consent, since it would be extremely difficult to identify individual study participants. It should be noted though that it is rare to have a text transcription that has been fully and sufficiently anonymised, and DARIS does not provide this service.
Access eligibility criteria. Access to qualitative data is restricted to researchers affiliated with a university or research institution, or to students with supervisor permission. Access is only granted for research projects or teaching purposes, with adequate justification for why the data are needed.
End-user contract. Before receiving the data, users must sign a contract either for research or teaching legally binding them to specific terms, including proper use, citation, and storage of the data, as well as respect for the confidentiality of individual study participants. All requests for data must be accompanied by a project description and statement of purpose.
For more information on protection of qualitative data, see section 2.0 on "Confidentiality, anonymisation, informed consent and access" in the document "Qualitative Data Archiving at DARIS – Policy and Procedures".
Rights and interests of data depositors
Besides protecting study participants, DARIS also protects certain rights and interests of those who deposit data with us:
- Data depositors maintain the copyrights on the data that they provide to DARIS.
- The data supplier can ask to be informed regularly about the use of the deposited data.
- If the data are deposited before publication by the researchers (of their own analyses), a limited embargo may be employed for a specific period of time.
- DARIS asks of data users that they explicitly cite the data source in all publications referring to the data used.
These rights and others are formalised in an agreement between the depositor and DARIS. Click here to see an example of a standard DARIS deposit contract.
Protection des données