One consortium to unite a growing international movement.

The era of genomic sequencing in medicine has arrived.

Scientists have long predicted that newborn sequencing would one day become a routine health check at birth, offering parents early guidance on care that is tailored to their child.

Researchers from around the globe have been independently studying the implementation of newborn sequencing, slowly moving us closer to realizing that goal.

We convened ICoNS to accelerate that process by bringing these world-class experts together to share knowledge, research plans, and results from the original eight studies in newborn sequencing.

This newly founded consortium introduced themselves and their mission to the world at the inaugural International Conference on Newborn Sequencing, held in Boston in 2022.

Since then, we’ve assembled the ICoNS Steering Committee, a governing body of project leaders who founded the consortium, to drive this growing movement steadily toward success.

Now, with all contributing partners under one umbrella, we can concentrate all of the world’s research on newborn genomics into one unified effort to improve public health for all.

The ICoNS Steering Committee

  • Nicolas Encina

    ICoNS Director

    Ariadne Labs, Harvard University

  • Robert C. Green

    ICoNS Co-Chair

    BabySeq

  • David Bick

    ICoNS Co-Chair

    Genomics England

  • Wendy K. Chung

    The GUARDIAN Project

  • Stephen Kingsmore

    BeginNGS

  • Holly L Peay

    Early Check Program

  • Allesandra Ferlini

    Screen4Care

  • Lilian Downie

    BabyBeyond

    BabyScreen+

  • Melissa Wasserstein

    ScreenPlus

MISSION

To inform the clinical and public health research and implementation of genomic screening in newborns through the harmonization and aggregation of scientific evidence and resources

ICoNS Activities

Our Mission advocates active progress toward a future in healthcare where no child with treatable conditions is missed and exposed to avoidable suffering. Our members are passionate about realizing that future. In addition to their independent work, many of our members actively contribute to coordinated Activities that are run by ICoNS Subcommittees that focus on common interests that will unlock potential for the field, globally. Activities are proposed by members, reviewed by management, and formally approved by the Steering Committee. A list of our current Activities:

Data Sharing Subcommittee

MISSION

To inform the implementation of NBSeq through aggregation, harmonization and dissemination of scientific data and evidence from Member programs in an equitable, secure and regulatory-compliant manner.

Gene List Subcommittee

MISSION

To inform the genes for analysis in NBSeq through defining principles of gene selection and providing a process to evaluate and consider gene disease pairs 

Economics Subcommittee

MISSION

The mission of this subcommittee is to advance understanding of the economic impacts of newborn genomic sequencing in various jurisdictions through assembling investigators to discuss data collection and economic evaluation methods, allowing for harmonization and innovation. 

Policy Subcommittee

MISSION

To offer evidence-based resources to support public health policy about newborn sequencing across the world.

ICoNS’X Subcommittee

MISSION

To convene world thought leaders in newborn sequencing, and adjacent fields, to discuss the current state of newborn sequencing as it pertains to public health, with the objective of celebrating advances while addressing key implementation challenges that affect widespread adoption.

Further information about our Activities and Subcommittees may be found in our Members-only network

The path forward begins with us.

ICoNS is growing daily, with more and more partners from around the world joining the movement and contributing their research to propel us toward the dream of preventive genomics as routine medicine.

With hundreds of individual consortium members and the multitude of researchers, healthcare providers, vendors, and laboratories they bring with them, ICoNS is the premier collection of experts in the field.

ICoNS welcomes thought-leaders across all fields that are actively participating in newborn sequencing implementation projects, or are imminently preparing to do so.

Membership

Benefits

  • Access to Membership network and monthly consortium meetings

  • Discount on annual conference registration and early ticket access

  • Eligible for participation in Activity Subcommittees

  • Access to Activity reports & resources

  • Participate in consortium communications

  • Receive updates and stay informed on the status of Consortium activities, emerging trends, and new opportunities

Question(s) about the consortium?

Contact Us