The National Dental Foundation and Colgate awarded Abimbola Oladayo, a postdoctoral researcher in Azeez Butali’s laboratory, a scholarship to support her research on ethical issues related to the handling of genetic information obtained through she and her team’s research.

As part of Butali’s research team, Oladayo is identifying incidental actionable findings in cleft lip and palate families from Africa as well as the limitations and challenges for understanding genetics risks information by community gatekeepers with the goal of making recommendations that are culturally appropriate. As part of this research, the team can often identify genetic risk for other genetic conditions (such as sickle cell anemia) during their research that can be addressed medically.

Unfortunately, many healthcare providers, including dentists, surgeons, pediatricians, etc., who assist in the research study lack familiarity with genomic data and are ill equipped to describe medical risks associated with that data—whether the risk is from sickle cell anemia or a propensity for cancer or heart disease.

Furthermore, the research participants may not have the ability to act on information about these medical risks.

To address these issues, (1) Oladayo’s research uses an online questionnaire to investigate healthcare providers current knowledge and comfort level with genomic information. (2) The team also surveys parents and children on their ability to act on medical advice if it were given. (3) The team also consulted with community gatekeepers, including religious and cultural leaders, on their knowledge about genetic risks and their beliefs about it and their willingness to act and support various medical responses.

In response to these studies, Oladayo hopes to develop a set of ethical and clinical best practices for releasing information to study participants who may benefit from them.