Source: European Parliament
Question for written answer E-001681/2025
to the Commission
Rule 144
Emmanouil Fragkos (ECR)
The Greek government is privatising preventive newborn screening by 2029, aiming to adopt a genetic analysis method through human genome sequencing instead of traditional biochemical testing. The process will be entrusted to RealGenix and Beginnings, with the research results belonging to these companies, which raises serious ethical and technical issues, as genetic analysis is still at the pilot stage worldwide.
The ‘programmatic agreement’ between the Ministry of Health and the two companies provides for the conduct of genetic testing for 100,000 newborns by 2029, without prior scientific evaluation or opinion from competent institutions. This process raises concerns about the management of personal data, as well as the possible exploitation of citizens’ genetic material by private companies, with a potential benefit for multinational pharmaceutical and insurance companies. In the absence of transparency and safeguards in a programmatic agreement between the public sector and companies for the genomic analysis of 100,000 newborns, despite the official assurance of compliance with the GDPR, the genetic material becomes the property of the company without clear guarantees for its non-commercial exploitation.
In view of this:
- 1.Are the strict confidentiality clause, the lack of public access to the agreement and the opacity of funding compatible with the objective of protecting the personal data of future Greek children?
- 2.Has the Commission examined whether the ‘programmatic agreement’ meets European standards for the protection of the GDPR?
Submitted: 26.4.2025