2024 Early Hearing Detection & Intervention Conference
March 17-19, 2024 • Denver, CO
Plenary II--A New Era of Early Detection - The Race to Newborn Genomic Sequencing and Where EHDI Fits In. Presented by Natasha Bonhomme
As programs focused on sequencing newborns expand around the globe (4 in the US, 7 additional throughout the world ), now is an opportune time for this community to learn and discuss what this could mean for identification and care in the near future. Many of the genetic conditions anticipated to be found through these sequencing programs have symptoms related to deafness, both early onset as well as later developing incidences. While many of these programs are driven from the viewpoint of reducing the diagnostic odyssey rare disease families face, the potential impact includes all families, including those in the EHDI community.
This presentation will cover what genomic screening is and what its purpose is, how it is different from genetic testing, its history, risks, benefits & challenges, and what is on the horizon and in discussions today. The accompanying panel members will provide their perspectives and information on the current landscape of sequencing as it relates to DHH, the challenges and opportunities for input at a national and international level, and why now is the time to build a stronger connection between EHDI and genetics communities while keeping families at the center of those relationships.
Presenter: Natasha Bonhomme
Natasha Bonhomme brings nearly two decades of nonprofit and maternal and child health experience to her role as Founder of Expecting Health at Genetic Alliance. She launched Expecting Health to bring together a range of consumer and professional stakeholders to address the need for clear, science-based information for families and individuals through tangible, actionable messages. Her focus is on bringing public and families’ perspectives into policy and program design and implementation. Her programmatic portfolio includes leading Baby’s First Test, a national resource center that reaches over 600,000 families and health providers annually, being the program director for the HRSA-funded Newborn Screening Family Education Program and participating on numerous committees on maternal health and dignified care throughout the prenatal and postnatal periods. Ms. Bonhomme has also testified in front of Congress on the importance of family support and education in newborn screening. She is an organizational representative (non-voting) to the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children. She is a Board Member of the DC-based Federally Qualified Health Center, Whitman-Walker Health, which provides affirming community-based care with a special focus on LGBTQ+ and HIV care.
ASHA DISCLOSURE:
Financial -
• Receives Ownership interest for Ownership from Nurture.
• Receives Consulting fee for Consulting from RTI.
• Receives Honoraria excluding diversified mutual funds for Membership on advisory committee or review panels from UNC.
Nonfinancial -
• Has a Professional (member)
relationship for Volunteer membership on advisory committee or review panels.