NEW RECOMMENDATION OF THE NATIONAL COMMISSION FOR BIOETHICS & TECHNOETHICS

“On the bioethical dimensions of newborn screening by human genome sequencing”

The National Commission for Bioethics and Technoethics announces the publication of a new RECOMMENDATION on the bioethical dimensions of newborn screening by human genome sequencing.

The Committee observes that the rapid advances and consistently falling costs of whole-genome DNA sequencing now enable molecular detection of all 6,630 known monogenic rare diseases, making hundreds of which manageable or even treatable. Thanks to technological advances, traditional newborn screening for hereditary diseases can develop into a comprehensive genomic newborn screening. The analysis of newborn genomes serves both the health of newborns (e.g., disease prevention, protection from health damage) and the state, insofar as it allows for the timely adoption of measures to prevent such diseases or, if they occur, to treat them more effectively.

The Commission believes that substantial benefits for both newborns and their families, as well as for public health, depend on clear assurances of scientific reliability and adherence to ethical, deontological, and legal standards. 

In its Recommendation, the Commission outlines the essential ethical and legal principles for the collection and processing of personal data that should govern any newborn genetic screening programme, concluding with 14 specific recommendations to the State.

The full text can be found here.

Athens, November 2025