Global Experts Announce the Formation of the International Consortium on Newborn Sequencing (ICoNS)

The Consortium aims to align stakeholders and establish guidelines based on empirical evidence for effective and equitable implementation of newborn sequencing.

The International Consortium on Newborn Sequencing (ICoNS) officially launched with the ratification of its 2023 consortium agreement. The purpose of ICoNS is 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 members recognize the power of newborn sequencing as a public healthcare tool that can help predict treatable and actionable disease in babies and intervene before symptoms begin. “Robust and effective clinical implementation of newborn sequencing can only be achieved through common understanding and coordination across the critical stakeholders that are required to build the infrastructure necessary to support it at population levels” said Nicolas Encina, Executive Director of ICoNS. It is with this in mind that ICoNS seeks to include and represent diverse voices in the harmonization of objectives and development. ICoNS was founded as a global alliance of scientists, government officials, industry leaders, healthcare providers, ethicists and patient advocates who share a vested interest in the long-term design, coordination, and implementation of newborn sequencing in public health.

Members

The Consortium was founded by 8 newborn sequencing research projects around the world, consisting of BabySeq, Genomics England, GUARDIAN Study, BeginNGS, Early Check, Screen4Care, ScreenPlus, and BabyBeyond. Nicolas Encina (Ariadne Labs, Harvard University, Precision Population Health) is a co-founder and the Executive Director of the Consortium, with Drs. Robert Green (BabySeq) and David Bick (Genomics England) acting as Co-Chairs. Leaders from each founding project form the Consortium’s Steering Committee, and an Advisory Committee is responsible for reviewing research proposals, establishing guidelines, standardizing on shared learnings, assessing progress, and suggesting future direction.

With the aim of measuring the utility of genomic sequencing in newborn care, The BabySeq Project is thrilled to be a member of ICoNS and to help standardize on learnings and strategies to implement newborn sequencing. “We felt that creating a centralized place for collaboration and knowledge sharing is essential for driving research and innovation in this space” said Robert Green, Director of Genomes2People, “ICoNS provides an excellent opportunity for global leaders in newborn sequencing to come together with the shared vision of preventing treatable disease before it even begins.”

"Genomics England is excited to be a member of ICoNS." said David Bick, Principal Clinician of the Newborn Genomes Programme, "Sharing the development and results of research efforts with other teams around the world will help all of us learn the best way forward for newborn genome screening". "Through careful and concerted efforts we can help thousands of children in every country live their best lives".

The Consortium currently consists of 17 newborn sequencing projects in 7 countries across the world. For more information on the consortium go to www.iconseq.org or email contact [at] iconseq [dot] org.

Activities

ICoNS seeks to develop recommendations based on evidence and expert consensus for the implementation of newborn sequencing. A variety of topics will be addressed by the Consortium to facilitate future implementation, such as:

  • Protocol and Method design

  • Data sharing

  • Infrastructure

  • Outcomes

  • Common dictionary and terminology

Conference

The Consortium sponsors an annual conference by its namesake (ICoNS), open to the public, to promote the exchange of development and ideas in public discourse. The inaugural event in October 2022 was held at the Museum of Science in Boston, MA, USA. On October 5-6 2023 ICoNS’23 will be held at The Royal Institution in London, England, co-hosted with Genomics England. For more information on the conference go to www.icons23.org or email event [at] icons23 [dot] org.

About ICoNS

Founded in 2022, ICoNS is a global alliance of scientists, government officials, industry leaders, healthcare providers, and patient advocates who share a vested interest in the long-term design, coordination, and implementation of newborn sequencing in public health.

About BabySeq

The BabySeq Project was a first-of-its-kind randomized clinical trial designed to measure the utility of using genomic sequencing in routine newborn care.

About the Generation Study

Genomics England will be delivering the Generation Study, a research project to sequence the genomes of 100,000 newborns to look for a specific set of rare genetic conditions that affect babies and can be acted on.