Perceptions of African-American health professionals and community members on the participation of children and pregnant women in genetic research.

BACKGROUND: As genetic research gains more prominence in society, ethical concerns and the need for safeguards in the participation of children and pregnant women have increased. This study examined the perspectives of African-American health professional and community members on genetic research involving children and pregnant women. METHODS: We used a mixed-methods approach to collect and analyze survey data and qualitative data from focus groups of community members and structured interviews of health professionals. RESULTS: We found that community members had significantly more favorable attitudes toward participation of children and pregnant women in genetic research than health professionals. Health professionals did not differ significantly from community members in their perceived understanding of genetic research. Emergent themes included limited knowledge of genetic research and distinction of biomedical research and clinical care, ethical concerns about confidentiality and potential harm, and the need to protect children and pregnant women. Participants expressed high interest and favorable attitude towards genetic research, despite limited genetic knowledge and concerns of potential harm to children and pregnant women. Some participants felt that genetic research findings could help dispel stigma and reduce discrimination, especially in mental illness. CONCLUSION: Findings suggest that the recruitment of participants into genetic research should directly address privacy and benefit concerns, and limited knowledge of physical and mental illness genetic research. There is a critical need to invest and engage racial/ethnic communities early, provide education on genetics, mental illness, and translate and share research findings with these communities.

Injuries among children in home and out-of-home care.

UNLABELLED: As the number of children receiving care in out-of-home settings increases in the United States, the risk of injury in such settings has become the subject of intense research. OBJECTIVES: This study examined the relative safety of out-of-home care compared with care in a child's own home. METHODS: This community based prospective cohort study of 656 families in three adjacent counties in the Piedmont region of North Carolina characterizes the patterns and rates of injuries among children less than 5 years of age in three child care settings, home care (HC), center based care (CBC), and other out-of-home care (OOHC). Information about minor and severe injuries was obtained from parents using monthly telephone interviews over a one year period. Statistical modeling designed to handle unbalanced data with correlated observations was used as the primary tool for analysis. RESULTS: Rate of minor injuries was highest in CBC, followed by HC, and then OOHC. However, these differences for OOHC may have been due to reporting biases and errors in rate estimates. There were no significant differences in severe injury rates among the three settings. CONCLUSIONS: The risk of serious injury among children under 5 in CBC is not different from that of children in HC or OOHC despite the fact that the risk of minor injury is higher.