Table 3.
Examples of stakeholder engagements used to inform newborn screening policies
| Institution or organization |
Key stakeholders |
Purpose of the engagement related to policy |
Policy- development stage |
Methods of engagement |
Outcomes of engagement related to policy |
|---|---|---|---|---|---|
| Michigan’s BioTrust for Health/Michigan Department of Community Health48 | Ten diverse communities selected to represent special concerns as stakeholders in the BioTrust | To ensure citizen involvement in the development of policies governing the use of stored dried blood spots from newborn screening | Agenda setting, analysis, policy formation, implementation, review and evaluation | Focus groups; pre- and postsurveys; BioTrust Community Values Board | Retained an opt-out policy for the use of archived bloodspots and formalized an opt-in policy for new leftover bloodspots; developed research guidelines and a multistage review process |
| Illinois Department of Public Health49,50 | Appointed members of the Genetic and Metabolic Advisory Committee (parents of affected children, scientific experts, medical experts) | To evaluate the appropriateness of adding conditions to the NBS panel and advise on all aspects of the NBS program | Agenda setting, analysis, policy formation, implementation, review and evaluation | Genetic and Metabolic Advisory Committee meetings | The Evanosky Foundation (parent advocacy group) lobbied the legislature to mandate screening for additional lysosomal storage diseases in Illinois’ NBS program |
| Wisconsin NBS Program51 | Wisconsin NBS Task Force (parents of affected children, physicians, public health experts), Wisconsin NBS Umbrella Committee (parent representatives, March of Dimes, Hospital Association) | To propose a framework for making addition and deletion decisions by scientifically weighing evidence and eliminating bias | Agenda setting, analysis, policy formation, implementation, review and evaluation | Meetings and communications of the Wisconsin NBS Task Force, Wisconsin NBS Umbrella Committee | Provided recommendations on how to improve the advisory process and developed criteria for adding/deleting tests |
| US Department of Health and Human Services (Federal NBS Policy)52 | Members of the Discretionary Advisory Committee on Heritable Disorders in Newborns and Children (medical, technical, public health, or scientific professionals; experts in ethics and heritable disorders; patient advocates | To provide advice to the Secretary of Health and Human Services about aspects of NBS and childhood screening and technical information for the development of policies and priorities in NBS | Agenda setting, analysis, policy formation | Meetings and communications of the Discretionary Advisory Committee on Heritable Disorders in Newborns and Children | Provided recommendations for national policy on retention and use of dried blood spot specimens after NBS; developed a decision-making process for including conditions in Recommended Uniform Screening Panel53 |
NBS, newborn screening.