Building on his February 2020 NIH grant, Azeez Butali, Gilbert Lily endowed professor of oral pathology, radiology, and medicine, and the world's leading expert in orofacial clefts among African populations, was awarded a supplemental award to investigate why African mothers in two clinics, Lagos and Kumasi, tended to want to know genetic results, including incidental or secondary findings, discovered during their research on the genetic causes of orofacial clefting among African populations.

Because of the far-reaching familial and social implications of orofacial clefts on family life, especially in less economically developed areas, there is often significant stigmatization and lack of sociocultural support for affected families. Some studies have found that because such conditions are believed to be a result of “blood,” that is—passed down in families—the stigma will extend toward the entire family unit.

A prior supplemental award investigated the role of community gatekeepers—such as community elders or religious leaders—in mitigating the stigma associated with orofacial clefts. Furthermore, as part of a first supplemental award and the larger NIH grant, the research team identified incidental genetic findings, including, for example, increase risks for sickle cell anemia among other genetic conditions. A third supplemental award focused on assessing the mental health of mothers and their children with orofacial clefting given knowledge about these genetic incidental findings, the pressures associated with orofacial clefts more generally, and related sociocultural stigma.

This is the fourth supplemental award for the team, and it explores why two clinics had 95% of affected mothers request information from the team’s genetic findings, including secondary findings. The team will conduct focus groups with the caregivers and use photovoice technology to observe them in real time outside of the clinic. The overall aim of the supplemental project is to increase participation in genetics and genomic research and to support families as they navigate the cultural challenges experienced by families.

Butali’s research team also includes Oluwafemi Adeagbo, assistant professor in the Department of Community and Behaviorial Health, Lord Gowans, a lecturer at Kwame Nkurumah University of Science and Technology, Wasiu Adeyemo, professor at the University of Lagos and Nnenna Mba-Oduwusi at Insight Health Consulting.