Privacy, BiSC’s priority

The data collected in the BiSC Project are much more than numbers: they describe the health, environment and development of children and their families. Therefore, the protection of this information is a central priority of the project.

Before any data collection, it is defined in detail what information is really necessary for the research. Participation is based on informed consent and respect for current data protection regulations, which establish that the information is treated confidentially and with appropriate security measures. BiSC does not make commercial use of the data and offers closed access to its databases and biological samples, so that only authorized research teams have access under controlled conditions.

One of the key elements is the anonymization and pseudonymization of the data. This means that the analysis files do not contain names or surnames, but codes. Identifiable data (such as name or telephone number) are stored in separate systems from clinical information or questionnaires, and only a small number of authorized professionals can link these two blocks when it is essential for the management of the study.

To reinforce security, projects like BiSC use protected servers, information encryption, robust passwords and access controls. The research team follows clear protocols on how to store and share sensitive files, and receives regular training in data protection. Any new IT tool or external collaboration is reviewed to ensure that it complies with the General Data Protection Regulation (GDPR).

Although the risk is low, the project also has action plans in place in the event of an error or incident, such as sending a file to the wrong recipient or the possible leakage of information. In such a situation, an internal protocol is activated: the problem is detected and corrected, the relevant people in charge are informed and the causes are analyzed to prevent it from happening again.

Thus, BiSC wants to make it clear that the confidentiality of its participants is not only a legal obligation, but a fundamental pillar of the project. The trust that families place in the study only makes sense if it is accompanied by rigorous, secure and responsible data treatment.

 

This news has been written by Toni Galmes, data manager of the BiSC Project.