Newborn screening in Greece – time for openness and transparency
The news that the Greek government has entrusted newborn screening to private organisations raises many concerns. Newborn screening is a vital public health initiative, and significant efforts are being made to improve the effectiveness and sustainability of programmes across Europe. But no such programme can be effective without significant public participation, and this can only be achieved through consultation at every step along the road. This has not been the case in Greece, where there has been no consultation with families or others, yet their compulsory participation in the scheme has been implied.
The application of wide-range genetic testing in newborns is in the early stages of research and its benefits and challenges still largely unknown. Adopting such a protocol outside a research framework is irresponsible. Whilst there is public health research that can lawfully be carried out without the consent of participants, in public emergencies, for example, this type of project does not fit into that category.
ESHG believes that all stakeholders should be involved in planning and deliberating any population screening proposal. Clear and understandable information on the aim of the research, if and how results would be returned, conditions under which data would be held, and the accountability and legal obligations of the research team should be made available. It is also essential that the public should be told the precise conditions under which the companies will use the data and what would happen to them in the event of a takeover, bankruptcy, or any other unexpected event in the future.
We are concerned that a lack of transparency could affect the trust of the public in newborn screening and in healthcare more widely - and not just in Greece. We have seen how mistrust in vaccination, for example, has spread quickly all over the world. We understand that the agreement with the private companies has been put on hold, and we hope that the government will now undertake open consultation with all those likely to be affected in the future before proceeding further.
References:
- https://www.reportersunited.gr/16145/adonis-georgiadis-dna/ [reportersunited.gr]
- the Agreement , in Greek https://www.documentcloud.org/documents/25893844-programmatike-sumbase-up-ugeias-me-realgenix-beginnings/ [documentcloud.org]
- Parliamentary question - E-001681/2025 Privatisation of preventive screening 25.4.2025 https://www.europarl.europa.eu/doceo/document/E-10-2025-001681_EN.html