186842 Knowledge of Newborn Screening and other Genetic Services and Resources among Minority Populations in Illinois

Sunday, October 26, 2008

Carlos Sanchez, MD , Jane Addams College of Social Work, Midwest Latino Health Research Training and Policy Center, Chicago, IL
Jose O. Arrom, MA , Midwest Latino Health Research, Training, and Policy Center, University of Illinois at Chicago, Chicago, IL
Aida L. Giachello, PhD , Midwest Latino Health Research, Training, and Policy Center, University of Illinois at Chicago, Chicago, IL
Elena Navas-Nacher, MS , Midwest Latino Health Research, Training, and Policy Center, University of Illinois at Chicago, Chicago, IL
Purpose. Improve delivery of genetics services for limited English Latinas and minority women of childbearing age, including state newborn screening services. Background. The Illinois Phenylketonuria Testing Act (410ILCS240) mandates newborn screening for all infants born in Illinois. The only allowable exception is parental refusal based on religious beliefs and practices; in that case, a written refusal must be signed by the parents and documented in the infant's medical record. Genetic screening of newborns is critical for identifying over 30-40 rare conditions. Early detection can lead to early treatment and entry into a range of health and development services. English language proficiency and low literacy are barriers to access and use. Methods. Under contract from the Illinois Department of Public Health, the UIC Midwest Latino Health Research, Training and Policy Center planned six focus groups, including three in Spanish, to assess understanding and knowledge of genetic services and resources in Illinois among underserved populations. Participants also will discuss the uses of family health histories, and strategies to improve genetics information. Participants, mostly females ages 18-45 with recent pregnancies, will be recruited through health centers and community organizations. Results. Six focus groups were planned in diverse communities. We expect that awareness gaps and misconceptions about newborn screening will be confirmed; however; new cultural and linguistic appropriate strategies will be developed. Implications. Research is necessary to improve communication about and access to genetic services for limited English populations; the findings will stress community perspectives on access, prenatal care, and community education.

Learning Objectives:
Identify barriers for genetics awareness of genetics testing and newborn screening among Latino and minority communities in Illinois. Describe community perspectives on culturally appropriate cultural strategies for improving access and use of genetic services, including the reframing of the benefits of family health histories. Design qualitative processes for the improvement of genetics services

Keywords: Neonatal Screening, Cultural Competency

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I coordinated this project, funded by the Illinois Department of Public Health-Genetics and Newborn Screening Program.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.