Greek Health Minister Georgiadis met with representatives of the US Embassy’s Commercial Affairs Department and American biotechnological and medical companies. Deputy Health Ministers Vartzopoulos and Themistocleous, as well as Chargé d’Affaires at the US Embassy Maria Olson and Commercial Attaché Yuri Arthur, also participated in the meeting.
The discussion focused on Greece’s participation in a program to collect genome information from newborns, with the aim of developing medical technology equipment for genetic therapies, as well as cooperation with private (American) research institutions. In short, the Embassy wants to “sell American companies.”
Following the meeting, Health Minister Georgiadis stated:
“Today, we were pleased to welcome to the Ministry of Health officials from the US Embassy, along with representatives of US biotech and medical companies, in an extremely constructive working meeting. Greek-American relations have long-standing political, commercial, economic and historical institutions and are based on a shared Western heritage and shared democratic ideals. In this context, the close cooperation between the two parties reflects the steady and continuous strengthening of our relations in the field of Health. We discussed the development of political initiatives and opportunities in genetic therapies, the exchange of know-how in the fields of research and the provision of health services, while at the same time emphasizing the importance of the upgrade of medical equipment currently being implemented, with modern and innovative machines that will offer quality health care services to citizens. Our continued cooperation in the health sector is one of the main pillars of our close bilateral relations and within this framework we will continue to work steadily, effectively and substantially.”
However, there are serious objections and reactions from the Greek scientific community on the issue:
” The Hellenic Society of Medical Genetics and the Hellenic Neonatology Society express reservations about the Ministry of Health’s plan regarding the genomic testing of 100,000 newborns and the alleged transfer of data to American private companies
The Hellenic Society of Medical Genetics and the Hellenic Neonatology Society express reservations in a joint statement regarding the “First Steps” Neonatal Genomic Testing program for 100,000 newborns that will be born in our country by 2029. The program applies the method of sequencing the entire human genome with a drop of blood, taken from the newborn’s heel in the first days of life. Initially, the participation of the Papageogiou Hospital of Thessaloniki in the program was announced, with an emphasis on the analysis of approximately 400 genes, which are related to more than 500 genetic diseases. These are diseases that are potentially curable if diagnosed and treated in time.
However, what has caused concern among scientists is the publication of the terms of the program agreement that the Ministry of Health allegedly signed with companies of American interests that will implement the program. According to the Editors’ Journal, the program agreement provides, among other things, for the assignment of data to two private companies, as well as that the research data that will result, namely the genetic profile of the Greek population – through the sample of 100,000 newborns – will constitute their “exclusive property”. Subsequently, the companies will keep the genomic data of the newborns in a biobank.
The Institute of Child Health – which has been conducting preventive screening of newborns biochemically until now – has already expressed its objection highlighting both scientific and ethical issues. It is noted that the Institute has not provided neonatal samples to these private companies so far.
Now, the Hellenic Society of Medical Genetics and the Hellenic Neonatology Society are filing their objections, emphasizing that the project is scientifically premature, while issues of bioethics, transparency and personal data protection are being raised.
As reported by Greek geneticists and neonatologists, this specific program will be based on the provision of neonatal samples (in pseudo-anonymized form) by the Institute of Child Health, where the national biochemical screening program has been carried out for 50 years. “Neonatal genomic screening aims at the early diagnosis of rare genetic diseases and the immediate therapeutic treatment of affected newborns before irreversible complications occur. This is a field of particular scientific interest which falls under the Personalized Precision Medicine of the future. Despite the fact that the efficiency of neonatal genomic screening is under investigation worldwide, the Greek Ministry of Health decided on its massive and immediate implementation in our country, ignoring all the concerns raised by the IYP, some of which are listed below:
The ethical and moral problems raised by the collaboration in such a massive genomic testing project.
Currently, there is no valid informed consent of parents to perform such diagnostic tests on a massive scale.
Genomic screening produces data about the newborn and his family that can be used over time and in various ways (forensic coverage by insurance companies, etc.)
Concerns are raised regarding ensuring the protection of the personal data of newborns/families and preventing any risk of threat against the latter either for reasons of malicious misappropriation by a third party or commercial exploitation of data trading, etc.
It must be ensured that Guthrie cards will be used only in accordance with the rules of medical ethics and conduct and only with a view to the national interest and only for the benefit of young patients and families, without under any circumstances being objects of exploitation or sale or running the risk of leaks of sensitive personal data.
They propose that the State take measures for the implementation of this specific method or any other that is accepted internationally as having documented scientific value and social benefit, with the Institute of Child Health as the implementing body. Also, the Hellenic Society of Medical Genetics and the Hellenic Neonatology Society argue that a prerequisite is a public consultation with the participation of all interested parties, such as the IYP, the relevant scientific associations and patient representatives. Finally, scientific societies ask that parents be informed thoroughly and analytically before signing the information and consent document, as well as that there be provision for future withdrawal of the signature by the children themselves, when they become adults.”
