The Community Engagement event will take place at a Hotel and Conference Center in Central Iowa. The hotel chosen will be centrally located and all costs are covered for participants. Participants will also be reimbursed for transportation to and from the event.
This Community Engagement project recruits a representative sample of Iowans to determine public perspective on the addition of new genetic conditions to the Newborn Screening Panel in Iowa (Pompe, X-ALD, and MPS-1). Participants will be briefed on the ethical, economic and personal considerations of adding these screenings. After the event, public recommendations will be compiled and published for policy and future decision making.
Experts, parents and concerned community members have been invited to share their thoughts during the weekend event. Facilitated discussion throughout the event will be guided by trained facilitators.