Makerere University bioethicists have cautioned that careless sharing of patient genetic data could put individuals, families, and communities at serious risk if ethical guidelines are not strictly followed.
The warning comes alongside findings from a study examining how human genes influence responses to HIV/AIDS treatments, with researchers also unveiling guidance on responsibly sharing genetic information to prevent social and ethical harms such as stigma and discrimination.
Dr. Sylvia Nabukenya, a bioethicist at Makerere University College of Health Sciences and lead researcher, said the study involved clients who had been on HIV treatment for at least five years at Infectious Diseases Institute (IDI)clinics. The research assessed patients’ responses to treatment based on their genetic makeup.
“Sixty-six percent of participants preferred that researchers share their genetic data with them to help understand why people with the same illness respond differently to identical drugs,” Dr. Nabukenya said.
However, the team raised concerns that sharing genetic information remains challenging due to the lack of clear guidelines on handling sensitive data. Genetic information can reveal extensive details about an individual and their family, including predispositions to certain diseases, which could be misused or lead to discrimination if improperly shared.
Prof. Erisa Mwaka, also a bioethicist at Makerere University, noted that Uganda’s regulatory framework for genomic research is inadequate.“Existing guidelines are too generic and fail to address how sensitive genetic data should be handled,” Prof. Mwaka explained.
Dr. Nabukenya said the newly proposed guidance provides a structured process for sharing genetic data responsibly, reducing ethical and social risks.
The scientists also highlighted a critical gap in the country: Uganda currently lacks trained genetic counselors, professionals who guide patients and families on the implications of genetic findings. “In other countries, genetic counselors undergo at least three years of formal training,” Nabukenya said, “yet in Uganda, this profession does not yet exist, leaving patients without expert guidance on sensitive genetic information.”
Institutions such as the Uganda Virus Research Institute (UVRI), Joint Clinical Research Centre (JCRC), Uganda Cancer Institute, and Government Analytical Laboratories are already conducting genomic research. However, experts warn that in the absence of a harmonized national framework, how these institutions share and release genetic data remains unclear.
