Understanding access to genomics in an ethnically diverse south Florida population: A comparison of demographics in odyssey and rapid whole genome sequencing programs.

Advances in genomic medicine have evolved to include rapid whole genome sequencing (rWGS) in pediatric intensive care settings. Traditionally, genetic testing was conducted in outpatient clinics, with stepwise genetic testing occurring over several years. This delayed the time to diagnosis, making it more difficult to include underrepresented groups, such as those who identify as Black and Latinx. National genetic sequencing programs have also struggled to engage these participants in their studies, leading to a significant disparity in access to new genetic technologies. The purpose of our study was to compare the demographic characteristics of families enrolled in both an Odyssey Program (N = 46), defined as outpatients in the Genetics Clinic who have had prior genetic testing, and a newly implemented rWGS (N = 52) sequencing program. Despite living in a large, ethnically diverse city, our results indicated that parents in the Odyssey program differed significantly from parents in the rWGS program in level of education, family income, and insurance status. For example, 71.5% of parents in the diagnostic Odyssey program had a college or advanced degree, whereas 42% of parents in the rWGS program had this level of education. Family income and insurance also differed, with 48.6% of families in the Odyssey program earning $100,000 or more versus 28.2% in rWGS; 56% of parents in the Odyssey program had private insurance with 26% on Medicaid whereas only 23% of parents in rWGS had private insurance, with the vast majority of children on Medicaid (69%). Thus, our Odyssey program illustrates some of the common pitfalls in implementing genomic testing in an ethnically diverse community, including lack of referrals, travel to outpatient visits, and a cultural mismatch with providers. The successful enrollment of underrepresented groups in the rWGS program demonstrates that given the opportunity to participate in genetic testing, families are interested and aware of the potential benefits of this testing for their child. As genomic sequencing transitions from outpatient to inpatient settings, an opportunity arises to close the health disparity gap. Recommendations for implementing rWGS in pediatric, intensive care settings that address the common barriers faced by underrepresented families are discussed.

Natural Mentors, Racial Pride, and Academic Engagement Among Black Adolescents: Resilience in the Context of Perceived Discrimination.

The current study examined the potential of relational closeness in the natural mentoring relationships (NMRs) of Black students to counter and protect against the noxious effects of school-based discrimination on academic engagement. The study sample included 663 Black students between the ages of 12 and 19 (M = 14.96 years, SD = 1.81 years), all reporting a natural mentor. Approximately half of participants were female (53%). Participants were recruited from three different school districts in a Midwestern metropolitan area. Findings indicated that perceived school-based discrimination was negatively associated with academic engagement. Relational closeness in NMRs countered, but did not protect against, the negative effects of perceived school-based discrimination on students' academic engagement. Additional analyses indicated that one mechanism through which relational closeness in NMRs may promote greater academic engagement among Black students is via increased racial pride. Results highlight the potential of NMRs to counter messages of inferiority communicated through discriminatory experiences in the school. Fostering relational closeness between Black students and supportive non-parental adults in their lives may be an effective strategy to boost academic achievement among Black youth experiencing discrimination in the school environment. In addition to fostering stronger bonds with natural mentors, strategic efforts to reduce school-based discrimination are needed to truly bolster the academic success of Black youth.

Applying a Social Justice Lens to Youth Mentoring: A Review of the Literature and Recommendations for Practice.

Youth mentoring interventions are often designed with the intention of promoting improved outcomes among marginalized youth. Despite their promise to reduce inequality through the provision of novel opportunities and increased social capital to marginalized youth, youth mentoring interventions hold the potential to reproduce rather than reduce inequality. In the current review, we explore literature on youth mentoring that has incorporated a social justice lens. We conclude that there is a need for greater attention to principles of social justice in the design, implementation, and evaluation of youth mentoring interventions. After reviewing the literature, we make recommendations for research and practice based on a social justice perspective and explore alternatives to traditional youth mentoring that may allow for better alignment with social justice principles.

Pathways to Pain: Racial Discrimination and Relations Between Parental Functioning and Child Psychosocial Well-Being.

The relationship between racial discrimination, parental functioning, and child adjustment is not well understood. The goal of the present study was to assess parental reports of discrimination in relation to depression and parenting practices, as well as on subsequent child internalizing and externalizing problems in low-income Black families. Data include a subsample of the Early Steps project, a multisite longitudinal study of financial and behaviorally at-risk families. Structural equation modeling was used to analyze our hypothesized model. Excellent model fit was established after removing externalizing problems from the model. As predicted, indirect associations were found from discrimination to parental depression, parenting, and child internalizing problems; and direct associations were found from discrimination to child internalizing problems. The results are consistent with findings suggesting that discrimination is negatively associated with adult well-being; moreover, contribute to the sparse literature on the effects of discrimination beyond the direct recipient. Finally, that parent discrimination was directly associated with child emotional problems suggests the continued need to address and treat discriminatory practices more generally.