Global Leadership. Rigorous Science. Individual Impact.
The ICoNS Global Impact
The International Consortium on Newborn Sequencing (ICoNS) is at the forefront of a global shift in pediatric medicine. As we move from traditional biochemical screening to comprehensive genomic sequencing, ICoNS serves as the collaborative engine ensuring this transition is scientifically rigorous, ethically sound, and economically viable.
This page highlights the work of our specialized subcommittees and their collective role in moving the field of newborn sequencing forward.
Through these efforts, ICoNS is not just predicting the future of genomic newborn screening—we are building it. By uniting experts across economics, ethics, and genomics, we are creating a world where every child can benefit from the most advanced medical insights the moment their life begins.
Subcommittee Activities
Our subcommittees are where the vital work of standard-setting happens. Members are invited to contribute to these specialized groups, driving the evidence-based guidelines that the world relies on.
Gene List
Establishing the gold standard for what we screen for. By revisiting the foundational Wilson and Jungner criteria for the genomic age, this team develops common screening protocols and gene-selection principles that leverage the collective expertise of our global consortium to ensure clinical utility.
Data Sharing
Defining the essential guidelines, principles, and ontologies required for the safe, secure, and controlled sharing of genomic data. By creating the frameworks for data interoperability, we amplify the statistical power of global research while ensuring regulatory compliance and equity across all member programs.
Economics
Advancing the global understanding of the economic sustainability of newborn sequencing. We convene health economists to harmonize outcome measures and standardize evaluation methods, ensuring implementation is both innovative and fiscally viable across different jurisdictions.
Policy & Ethics
Establishing the core ethical principles that guide ICoNS-affiliated projects. We keep the community at the frontier of international policy, serving as a trusted source for robust debate on unresolved issues and recommending reforms that protect patients and families.
Analysis
Addressing the technical and analytical bottlenecks that hinder the large-scale adoption of genomic screening. We focus on solving decision-support issues and downstream interpretation to ensure that as gNBS scales, the analysis remains precise and actionable.
ICoNS’X
The strategic body responsible for producing and executing the annual ICoNS conference. Now recognized as the premier convening of gNBS experts worldwide, this subcommittee ensures the consortium remains the focal point for global knowledge exchange and networking.