From Cradle to Cloud: The contract between private companies and the Ministry of Health for newborn DNA

The open letter

An open letter was sent to the President of the Hellenic Parliament, the Prime Minister, Members of Parliament, universities, and relevant authorities by citizens, including doctors, scientists, lawyers, and others, in response to the signing of a Program Agreement between the Ministry of Health and two private companies.

The agreement involves the analysis of DNA (genetic material) from newborns in Greece.

What is this agreement?

Currently, five drops of blood are taken from all newborns and tested for around 30 diseases by the Child Health Institute (a body of the Ministry of Health).

The Agreement stipulates that three of the five blood drops will be handed over for analysis to one of the two companies, granting them “exclusive ownership” of the DNA data for 100,000 newborns in the country.

The signing of the agreement was made public in early April following an investigation by “Reporters United” and “Ef.Syn.“.

What are the scientists asking for

The signatories describe the transfer of data to private companies as “unacceptable” and request:

1. Its cancellation
2. The initiation of actions to properly utilize the data for the benefit of the public

They emphasize that for the screening to be beneficial, “it must be conducted under strict conditions” and not with haste or lack of transparency, as is the case here.

“They highlight that conducting this universally on children records genetic traits that form part of the identity of the Greek people.”

What they oppose #1

The scientists express their opposition to, among other things:

• The lack of parental consent, which is required by fundamental ethical and medical principles.
• The absence of a clear statement that the program is research-based.
• The lack of public consultation with the scientific community and society at large.
• The absence of a regulatory framework for using the population’s DNA for research or other purposes in Greece (with no independent oversight body).

What they oppose #2

• The risk of data theft, misuse, and commercialization after analysis (e.g., by insurance companies), as there is no relevant regulatory framework in Greece.
• The disregard for the objections raised by the Child Health Institute (the responsible body) regarding the signing of the contract.
• The lack of transparency about the program’s funding and the compensation to be
  

  Political Reactions

In a statement, SYRIZA called for the immediate cancellation of the contract, describing it as a “scandal that raises serious issues of bioethics, transparency, and personal data protection.”

PASOK brought the issue to Parliament, stating that “the entire program is being kept secret,” while the KKE raised the matter with the European Commission, calling the “handover of newborn DNA to private companies” unacceptable.
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*The contract was never posted on Diavgeia and includes a strict “confidentiality clause.”

Response from the Minister of Health

In early May, Health Minister A. Georgiadis dismissed the raised concerns as “nonsense,” assuring that there was no cause for concern.

He stated that “the proposal involves conducting free preventive genetic tests for 500 rare diseases, followed by the study of anonymous genomes for research purposes in the U.S.”

He also clarified that the Monitoring Committee is responsible for ensuring the proper implementation of the program.

The Monitoring Committee

The Monitoring Committee for the newborn DNA program is not an independent body, according to RU.

Its president is an employee of the Ministry of Health, and 4 out of 6 members represent the private companies that will manage the DNA.

The signing of the open letter is ongoing. To sign, click here.