2023 ACMG Annual Clinical Genetics Meeting Digital Edition: Poster Gallery-Implementing Community Engagement to Refine Education and Consent Materials for Newborn Genomic Sequencing Research

Pdf Summary

The document describes the methods and results of formative activities and community engagement efforts conducted to refine education and consent materials for a newborn genomic sequencing research study called Early Check. The formative activities included an in-person focus group and virtual interviews with parents of babies in North Carolina, while the community engagement events involved various community boards and groups. The goal of these activities was to improve the clarity and acceptability of the study materials.<br /><br />The results showed that the feedback obtained from the formative activities and community engagement events helped improve the clarity of the study materials. Purposeful engagement with a diverse group of respondents ensured inclusivity in the materials. Respondents were generally accepting of the concepts of newborn sequencing and screening for increased risk of type 1 diabetes. However, they required clear educational materials to understand genetic risk.<br /><br />The document also discussed the importance of including formative activities in the development of study materials to ensure they are understandable and acceptable to the target audience. Additional formative activities with parents and healthcare providers were planned to obtain further feedback for finalizing the materials.<br /><br />The document provided contact information for the presenting author and acknowledged the support of grants from Janssen and Travere Therapeutics in conducting the research. It also included references to previous research publications related to the Early Check study.<br /><br />Figures 1 and 2 in the document showed the revised recruitment flyer and screening group descriptions for Early Check. The demographic characteristics of the formative activities respondents were summarized in Table 1. The results of the formative activities and community engagement events were also summarized, including respondents' familiarity with genetic terms, understanding of genetic risk, and preferences for screening options.<br /><br />Overall, the document highlighted the importance of community engagement and formative activities in refining education and consent materials for newborn genomic sequencing research. The feedback obtained from these activities can help ensure the materials are understandable and acceptable to the target audience.

Asset Subtitle

Co-Author - Ana N. Forsythe, MS; Co-Author - Rebecca Moultrie, AS; Co-Author - Sara Andrews, MAT, MPH, RD, LDN; Co-Author - Mary Beth L. Boyea, MS; Presenting Author - Heidi Cope, MS, CGC; Co-Author - Holly L. Peay, PhD, MS, CGC;

Meta Tag

Ethical Legal and Social Issues

Genome sequencing

Polygenic risk scores

Public Patient and Professional Education

Sequencing

Co-Author Ana N. Forsythe, MS

Co-Author Rebecca Moultrie, AS

Co-Author Sara Andrews, MAT, MPH, RD, LDN

Co-Author Mary Beth L. Boyea, MS

Co-Author Holly L. Peay, PhD, MS, CGC

Presenting Author Heidi Cope, MS, CGC

Keywords

formative activities

community engagement

education materials

consent materials

newborn genomic sequencing

Early Check

clarity

acceptability

feedback

genetic risk