Romania begins building its own reference genome: ROGEN enters the public information phase, with no sampling at this stage

Romania is taking a strategic step toward personalized medicine through the national project ROGEN (Development of Genomic Research in Romania), which aims to create a reference genome for the Romanian population and to develop a modern genomic data infrastructure. At this stage, the project has officially entered the public information and expression-of-interest phase, with no biological sample collection taking place yet.

According to public statements by Dr. Ștefan Busnatu, ROGEN seeks to build a “reference map” based on data relevant to Romania’s population, which, over time, can support more accurate risk assessments, better-tailored clinical decisions, and the development of preventive and personalized medicine.

What the current phase actually means

The focus is not on sampling, but on information, understanding, and building an informed community prepared for the next operational steps. Interested individuals can express their intention to participate, while the technical phases will be launched gradually as the infrastructure becomes fully operational.

“Genomics is not only about technology, but about people and trust,” Dr. Busnatu emphasizes, explaining that a national project of this scale only makes sense if it is built on clear rules and transparent communication.

The key question: what happens to my data?

One of ROGEN’s central messages concerns genomic data governance. The project is based on principles such as data protection by design, pseudonymization, strict access control, traceability and audit of data usage, ethical oversight, and full compliance with legislation, including GDPR.

In this context, trust is not requested “by word,” but built through verifiable policies, procedures, and responsibilities that clearly define how data are collected, stored, used, and who can access them.

Meeting at UMF “Carol Davila”: security, interoperability, governance

On January 20, 2026, an open meeting dedicated to the progress of ROGEN took place at UMF “Carol Davila” in Bucharest, bringing together representatives of public institutions, academia, clinicians, researchers, and consortium partners.

Two major directions were presented:

• the development of infrastructure for the reference genome and a secure, interoperable national genomic data platform;
• the consolidation of the project’s strategic dimension, including collaboration with the European Investment Bank (EIB) within PASA, focusing on sustainability and integration into European initiatives.

The project is supported by the Ministry of Investments and European Projects, the Ministry of Health, UMFCD, and the Institute for Research and Development in Genomics (ICDG).

Link to digital health systems: a long-term objective

ROGEN’s vision includes, in the long term, interoperability between genomic infrastructure and Romania’s digital health systems, including the Electronic Health Record (PIAS). Responsible integration and longitudinal follow-up could transform genomic data into a real tool for prevention, population-specific risk validation, and more personalized clinical decisions.

Communication in plain language

To prevent genomics from remaining a purely technical domain, the ROGEN team, together with Dr. Mihail Pautov and the research teams involved, aims to build communication that is accessible to the general public, with clear explanations and direct answers to common questions about participation and data use.

Updated information about the project is available on the official ROGEN website, where the stages, objectives, and ways to stay connected with the project’s progress are explained.

ROGEN represents a national effort to build Romania’s own framework for genomic medicine, centered on transparency, clear rules, and informed public involvement.