A systematic review of strategies that increase the recruitment and retention of African American adults in genetic and genomic studies.

Background: The National Institutes of Health mandates the inclusion of ancestrally diverse populations into federally funded biomedical and clinical trials research. However, low participation of ethnic minorities in genetics-genomics research continues to be one of the most difficult aspects of conducting human subjects research.

Objective: This systematic review was conducted to document effective recruitment strategies that increase participation in genetics-genomics studies.

Decisions to participate in fragile X and other genomics-related research: Native American and African American voices.

Unlabelled: The lack of adequate minority representation, including Native-Americans (NA) and African-Americans (AA), in health related research is well documented. Nowhere is this truer than in the area of genomics-related research, which is especially troubling as NA and AA have some of the highest rates of overall morbidity and mortality due to genetic diseases.

Objectives: The purpose of this study is to explore factors associated with the under representation of NA and AA adults in genetic research including: (1) decision barriers, (2) the influence of health care networks, (3) recruitment preferences, and (4) health conditions.

Checklist assessments of FMR1 gene mutation phenotypes.

Background: Fragile X Syndrome (FXS) caused by the mutation of the FMR1 gene, is the most common inherited cause of intellectual disability, autism, and other psychoneurological disorders. Timely identification of young children with social or emotional challenges is urged in that emotional and social problems are often overlooked until problems reach serious magnitudes. Reliable methods of screening children at an earlier age are crucial to early intervention.