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. METHODS: Extensive literature search strategies were employed to locate and appraise relevant literature reporting original data in which strategies to recruit African American adults into genetics-genomics research studies had been evaluated. RESULTS: Six studies published up to July, 2011 were included. Informal recruitment strategies for initial contact appeared to have a more positive impact on increasing recruitment and participation numbers than formal mailings of letters and postcards. Another key stratagem identified was participant-recruiter like-ancestry. Other methods such as monetary incentives and support of the research project by community leaders were not as effective. CONCLUSIONS: Some strategies bolstered recruitment rates while others did not. More research is needed to determine the efficacy of recruitment strategies with African Americans.

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. METHODS: Eight focus groups were conducted, each by led by individuals who shared racial/cultural identification with participants. Adherence to tenants of Community Based Participatory Research (CBPR) was maintained. Qualitative data were analyzed using NVIVO program analyses and the constant comparative method. RESULTS: Themes supported the efficacy of CBPR to help demolish barriers while facilitating a willingness to participate in genetics-related research. CONCLUSIONS: Community-based approaches may enhance representation of minorities in genomics-related research crucial to eliminating health disparities.

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. PURPOSE: The purpose of this article is to illuminate phenotypic characteristics of FXS and the role that the use of screening tools may play to help interdisciplinary health and human development professionals to empower parents as frontline screeners to seek early diagnosis and implement effective early intervention. METHODS: This article reviews what is known about phenotypic characteristics of the FMR1 gene mutation. In addition, eight screening tools in use to screen for the FMR1 gene mutation are compared with the author-developed screening tool, the Biopsychiosocial Screening Inventory for Fragile X Syndrome (BIPSSI-FX). CONCLUSIONS: The BIPSSI-FX, a parent response tool, is a conduit by which the primary caregivers may contribute to an earlier diagnosis. It is the only parent response tool, based on research evidence, designed to tap the wealth of knowledge parents possess about subtle developmental characteristics of very young children with FXS.