Workshop: Next-Generation Screening – The Promise and Perils of DNA Sequencing of Newborns at Birth

Wednesday, June 7 | 8:30 a.m. – 5 p.m. ET | Washington, D.C. & Online
On June 7, the Roundtable on Genomics and Precision Health at the National Academy of Sciences will host a hybrid public workshop examining the use of DNA sequencing as a supplement to traditional newborn screenings for treatable, but not yet clinically evident, conditions. The workshop will feature family, patient advocate, and public health representative perspectives on the need for and readiness of newborn DNA sequencing and will explore potential impacts and risks.

Objectives:

  • Examine the known and expected benefits, and potential harms, of the widespread utilization of newborn DNA sequencing
  • Explore ethical as well as data security and ownership concerns associated with newborn DNA sequencing
  • Address issues of next-generation newborn screening equity in the U.S.

Seating is limited for in-person attendees and registration is required. To learn more about the workshop, please visit the project webpage.

International Conference on Newborn Sequencing

Wednesday, October 5 – Thursday, October 6 | Boston, MA & Virtual

The inaugural International Conference on Newborn Sequencing, to be held October 5-6 in Boston, will explore how DNA sequencing is being implemented globally as a diagnostic and screening strategy for newborn children.

Learn more and register on the event website.

Please note: registration fees vary and will increase after Friday, September 30.

Parental Guidance Suggested: Engaging Parents as Partners in Research Studies of Genomic Screening for a Pediatric Population

Posted on by Alexis

Sabrina N. Powell, Grace Byfield, Ashley Bennetone, Annabelle M. Frantz, Langston K. Harrison, Erin R. James-Crook, Heather Osborne, Thomas H. Owens, Jonathan L. Shaw, Julianne O’Daniel, and Laura V. Milko

Recent advances in genomic sequencing and genomic medicine are reshaping the landscape of clinical care. As a screening modality, genetic sequencing has the potential to dramatically expand the clinical utility of newborn screening (NBS), though significant barriers remain regarding ethical, legal, and social implications (ELSI) and technical and evidentiary challenges. Stakeholder-informed implementation research is poised to grapple with many of these barriers, and parents are crucial stakeholders in this process. We describe the formation and activities of a Community Research Board (CRB) composed of parents with diverse backgrounds assembled to participate in an ongoing research partnership with genomic and public health researchers at the University of North Carolina. The mission of the CRB is to provide insight into parental perspectives regarding the prospect of adding genomic sequencing to NBS and collaboratively develop strategies to ensure its equitable uptake. We describe how these contributions can improve the accessibility of research and recruitment methods and promote trust and inclusivity within diverse communities to maximize the societal benefit of population genomic screening in healthy children.

Read the full article in Frontiers in Genetics.

Keywords: genomic sequencing, newborn screening, community research board, engaging parents, stakeholders, public health, equity, accessibility