Completed
Topics
This workshop explored the current use of DNA sequencing in newborns as well as the potential benefits and harms, associated ethical and data security issues, and equity in access to screening.
Featured publication
Workshop_in_brief
·2023
Pilot programs are employing whole genome sequencing and whole exome sequencing during the newborn phase both within the United States and internationally. While sequencing offers the opportunity to screen for treatable but not clinically evident conditions early in a childs life, it raises a host...
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Description
A planning committee of the National Academies of Sciences, Engineering, and Medicine will organize and conduct a one-day public workshop to examine the utilization of DNA sequencing as a supplement to traditional newborn screening for conditions that are treatable, but not clinically evident in the newborn phase. The overarching goals of the workshop are to (1) examine the known and expected benefits, and potential harms, of the widespread utilization of newborn DNA sequencing, (2) explore the ethical and data security and ownership issues associated with DNA sequencing of newborns at birth, and (3) address issues of next-generation newborn screening equity in the United States.
The public workshop will feature invited presentations and discussions to:
• Explore the scope of recently initiated programs, such as those in the US, UK, and Australia, investigating newborn DNA sequencing as a screening tool in diverse healthy newborn populations and their relationship with established newborn screening efforts.
• Engage families, patient advocates, public health system representatives and members of professional societies to provide their views on the need, impact, readiness, and risks of newborn DNA sequencing.
• Address equity of access to screening, on the assumption that newborn DNA sequencing may be less available, and less likely to identify pathogenic variants, in individuals from groups who are under-represented in genetic databases.
The planning committee will organize the workshop, develop the agenda, select and invite speakers and discussants, and moderate or identify moderators for the discussions. Proceedings-in-brief of the presentations and discussions at the workshop will be prepared by a designated rapporteur in accordance with institutional guidelines.
Collaborators
Committee
Co-Chair
Co-Chair
Member
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Sponsors
23andMe
All of Us Research Program
American Academy of Nursing
American College of Medical Genetics and Genomics
American Medical Association
American Society of Clinical Oncology
American Society of Human Genetics
Association for Molecular Pathology
Biogen
Blue Cross Blue Shield Association
College of American Pathologists
Eisai
Geisinger Health
Genome Medical
Health Resources and Services Administration
Illumina Inc.
Kaiser Foundation Health Plan, Inc.
Myriad Genetics
National Cancer Institute
National Human Genome Research Institute
National Institute of Mental Health
National Institute of Nursing Research
National Institute on Aging
National Institutes of Health
National Society of Genetic Counselors, Inc
Regeneron Pharmaceuticals
The Jackson Laboratory (JAX)
U.S. Air Force Medical Service
University of California, San Francisco
University of Vermont Health Network Medical Group
Vibrent Health
Staff
Sarah Beachy
Lead
Meredith Hackmann
Lydia Teferra
Kathryn Asalone
Aparna Cheran
