Consumer Taskforce on Newborn Screening

WASHINGTON, DC – September 17, 2007 – Genetic Alliance announced today the establishment of the Consumer Taskforce on Newborn Screening (CTF-NBS). The ten-member group includes parents who have experienced a range of NBS outcomes – carrier identification, false positive screening, and typical/normal screening – as well as those who have a child with a condition for which there is no medical treatment at this time, and those whose child did not have access to screening for the condition s/he has.  Thus, the CTF-NBS includes parents who are experienced in various aspects of the NBS system in addition to those who are just starting to navigate these issues. The CTF-NBS will ensure the integration of consumer perspectives in the planning and implementation of the Consumer Focused Newborn Screening projects, two cooperative agreements awarded by the Genetic Services Branch of Health Resources Services Adminstration/HHS.

Several advocacy organizations are partnering with Genetic Alliance in the CTF-NBS: Cares Foundation, Children’s Sickle Cell Foundation, Citizens for Quality Sickle Cell Care Foundation, Hunter’s Hope Foundation, and Save Babies through Screening Foundation.   Adds Micki Gartzke, Director of Education and Awareness for Hunter’s Hope Foundation, “This Taskforce brings consumers of NBS together in a novel and innovative way.  Through our discussions, the taskforce will ensure that the consumer perspective is central to the models produced from these projects.”

By bringing together a broad spectrum of viewpoints, we create a forum for the assessment of different ideas about newborn screening using the question ‘what is at stake?’ This focus enables multiple interests to be boiled down to their core fundamental issues, leading to the empowerment of consumers from different interest groups. This process will help both veteran and new NBS stakeholders to understand the issues and policies around NBS. Victoria Odesina, Co-Founder and Board member of Citizens for Quality Sickle Cell Care, remarked, “I hope that through this project, the sickle cell ‘community’ will have a better understanding of and involvement in NBS issues for health promotion.”

Through the Consumer Focused Newborn Screening projects, the CTF-NBS will be instrumental in identifying and empowering other consumers in the NBS community.  For example, by preparing consumers to attend the Secretary’s Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children (ACHDGDNC) meetings, the CTF-NBS will be encouraging others to participate in education and policy initiatives for NBS. This will not only increase the education of these consumers but also the greater knowledge of the stakeholder communities that they represent.  "The CTF-NBS will disseminate knowledge and understanding about NBS issues to the communities and stakeholders that we represent," notes Jill Levy-Fisch, President of Save Babies Through Screening Foundation.

Natasha Bonhomme, Program Coordinator for the Consumer Focused Newborn Screening projects, will manage the CTF-NBS.

Please contact Natasha Bonhomme nbonhomme@geneticalliance.org at 202.966.5557 ext.211 for more information.