The Iowa Department of Public Health (IDPH) is recruiting individuals interested in issues related to newborn screening for inherited conditions. The project coordinated through the IDPH Center for Congenital and Inherited Disorders will bring together a diverse and representative group of Iowans for a weekend to help determine future policy for the state’s newborn screening program.
Recently, three new disorders (MPS-1 (Mucopolysaccharidosis Type I), X-ALD (X-Linked Adrenoleukodystrophy) and Pompe Disease) were recommended as additions to the screening. “Our staff wants to hear Iowans’ opinions about how the program decides what disorders it screens for. There are many ethical, economic and social issues involved with some of the new disorders.”
Selected participants will receive $250, free travel, meals and hotel stay during the April 7 and 8, 2018, public discussion event. Transportation, childcare assistance and interpretation will be available as needed. There will be presentations and discussions about health, ethics and genetics, with experts and others with experience in newborn screening and genetics presenting information.
The project is for the Iowa Department of Public Health and is funded by a grant from the Association of Public Health Laboratories and the Colorado College of Public Health NewSTEPs program.
The Center for Congenital and Inherited Disorders collaborates with the University of Iowa State Hygienic Laboratory, and the Stead Family Children’s Hospital and Department of Pediatrics to administer the Iowa Newborn Screening Program.
For more information and to apply for the event, visit http://bit.ly/2ru10n5.