On Friday, April 11, the newspaper Efimerida ton Syntakton and the network Reporters United revealed the programmatic agreement between the Ministry of Health and the company Real Genix along with the NGO Beginnings – Newborn Sequencing Initiative.
The agreement concerns the privatization of neonatal screening and involves the processing of special categories of personal data, specifically genetic data.
Based on the content of the programmatic agreement, there appears to be insufficient reference to compliance with data protection legislation. The roles of the involved parties are not clearly defined, and there is no information provided to inspire public trust regarding the seriousness with which research projects involving special categories of personal data should be handled.
For this reason, on April 14, we submitted a request before the Hellenic Data Protection Authority (HDPA) to investigate the matter, as significant challenges arise regarding the protection of sensitive personal data under this agreement. You can read our full submission here.
Furthermore, following our request to the Data Protection Authority, on April 15, we sent an electronic letter to the DPO (Data Protection Officer) of the Ministry of Health, in which we call on him to:
A) Inform us of the actions taken in the context of their duties as DPO of the Ministry of Health, specifically regarding this programmatic agreement:
-
Let us know whether they have issued guidance or provided information to the Minister of Health or other relevant departments of the Ministry concerning this agreement;
-
Inform us whether they have provided advice regarding the need for a Data Protection Impact Assessment (DPIA) in relation to this project, either to the Minister or other competent services within the Ministry;
-
Inform us whether they have contacted the HDPA about this programmatic agreement and the associated project.
Additionally, if the DPO has issued any written guidance or communications to the Minister or other Ministry departments in relation to points A1 and A2, we respectfully request access to these documents, in accordance with our right as Greek citizens to access public records, as defined in Article 5(5) of the Code of Administrative Procedure (Law 2690/1999, A’ 45), as currently in force, taking into account the relevant Ministerial Decision of the Minister of the Interior (No. 21797/31-12-2024).
We look forward to receiving the relevant responses.