Work

P680: Implementing community engagement to refine education and consent materials for newborn genomic sequencing research

Year: 2023

Type: article

Abstract: Early Check is a research program in which parents of children born in North Carolina (NC) are offered screening for selected disorders not on NC’s newborn screening (NBS) program. Informed consent for Early Check is obtained primarily through an online consent portal that uses a participant-centered approach. Since launching in October 2018, Early Check has screened >21,000 babies.

Source: Genetics in Medicine Open

DOI: 10.1016/j.gimo.2023.100752

Authors: Ana Forsythe, Rebecca Moultrie, Sara Andrews, Mary Beth Boyea, Heidi Cope, Holly Peay

Institution: RTI International

Language: English

Topic: Ethics in Clinical Research

Subfield: Public Health, Environmental and Occupational Health

Field: Medicine

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: gold

Estimated APC paid: $3,200