269916 Community role for implementation of expanding recommended uniform newborn screening panel

Tuesday, October 30, 2012 : 9:30 AM - 9:50 AM

Sylvia M. Au, MS , Genetics Program, Hawaii Department of Health, Honolulu, HI
Background: Based on disorder review and recommendations by the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC), the Secretary of Health and Human Services recommends new disorders to the Recommended Uniform Screening Panel. Newborn screening (NBS) is state mandated; each state independently determines how to implement and fund new recommendations to its already large list of disorders. This model illustrates one state's community-based decision making process to decide if and how to implement screening and follow-up for new disorders.

Methods: The Hawai‘i Department of Health Genetics and NBS Programs convened a community task force to make recommendations on adding Critical Congenital Heart Defects to the state NBS panel. The task force includes cardiologists, nursery staff, birthing facility administration, public health staff, pediatricians, and family representatives. Neighbor Island stakeholders attend via teleconference. The task force considers SACHDNC recommendations, American Academy of Pediatrics guidelines, plus other relevant information (e.g., cost analysis). It discusses whether a disorder should be added to the state panel and what model will be used for screening and follow-up, if implemented. Task force recommendations are presented to the State NBS Advisory Committee for review, then transmitted to the Hawai‘i Department of Health for final decisions and implementation.

Results and Conclusions: Adding disorders to mandated state NBS panels requires community agreement, additional manpower, and funding. When federal agencies make unfunded recommendations, states must decide if and how to implement them. This decision making model helps Hawai‘i provide the NBS services that the community wants.

Learning Areas:
Diversity and culture
Planning of health education strategies, interventions, and programs
Program planning
Public health administration or related administration

Learning Objectives:
1) Identify the Recommended Uniform Screening Panel 2) Describe one model of community shared decision making for adding new tests to the state mandated newborn screening panel.

Keywords: Neonatal Screening, Community Participation

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have headed the state genetics program in the Hawaii Department of Health for almost two decades. I have overseen and continue to oversee the revision of legislation and implementation of new disorders to the newborn screening panel during my period with the health department. I have been the principal investigator on federally funded research projects to determine what the public wants for newborn screening education and implementation.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.