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

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.