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Article History

Received: 14 November 2023

Accepted: 1 April 2024

First Online: 27 April 2024

Declarations

:

: All authors declare they have no financial or other conflict of interest.

: The investigations carried out were part of the response to a health alert, and insofar as the need for emergency implementation can be characterized and justified, benefited from the exemption from the authorisation requirement set out in article 67 of law no. 78-17 on information technology, files and freedoms (loi informatique et libertés). This waiver was valid for one year only. In this way, <i>Santé publique France</i> collected the data under the legal authorisation number 341 194 v42 of the French national commission for information technology and civil liberties (ie CNIL:Commission nationale de l’informatique et des libertés). This authorisation allowed the agency to collect and analyse data on investigations performed in the context of a health warning, especially a suspected cluster, data from families and healthcare professionals. The processing of their data was part of the management of a health alert carried out under the responsibility of <i>Santé publique France</i>. This processing based on a mission of public interest, was thus established in accordance with the provisions of articles L. 1413-7 and L.1413-12-3 of the French Public Health Code. The experts from the SEC, bound by medical secrecy, provided signed commitment to confidentiality and only had access to pseudonymised data (without first and last names). Families of cases included in the suspected clusters in Loire-Atlantique and Morbihan received a letter from <i>Santé publique France</i> informing them of the transfer of their home address details to anses within the framework of their investigations. The storage period for data sent by families was 5 years. They were informed that they could at any time exercise their right to oppose, access, rectify or delete the data collected.

: Personal data may not be published without the express and specific consent of the persons concerned. A face-to-face interview was conducted with each concerned family in order to present to families how data collected during the investigations could be presented in a public report, with their consent.Santé publique France publications must comply with the confidentiality provisions of Articles L. 311-6 and L. 311-7 of the French Code of relations between the public and the administration. Thus, Santé publique France publications may not disclose information:Some families expressed their wish that neither the name of the <i>commune</i> (sub-<i>département</i> administrative area) where they were living at the time of the pregnancy, nor the year of birth of their child should be published. Therefore, the only specific geographical names given are those of the three <i>départements</i> involved (Ain, Morbihan, and Loire-Atlantique), and the regions to which they belong (Rhône-Alpes, Brittany, and Pays de la Loire, respectively). Furthermore, only periods of pregnancy covering several years are presented.