Makerere University bioethicists have warned that irresponsible sharing of patient genetic data could expose individuals, families, and communities to serious risks if proper ethical guidelines are not followed.
The scientists, who were releasing findings from a study analyzing how human genes interact with HIV/AIDS drugs, also unveiled new guidance on how to responsibly share genetic information without exposing people to social and ethical risks such as stigma and discrimination.
Dr. Sylvia Nabukenya, a bioethicist at Makerere University College of Health Sciences who led the study, said during a meeting on Wednesday that the research involved clients who had been on HIV treatment for at least five years and were receiving care at the Infectious Diseases Institute (IDI) clinics. The team assessed how patients responded to treatment based on their genetic makeup.
She revealed that 66 percent of the participants preferred that researchers share their genetic data with them to help them understand why people with the same illness may respond differently to identical drugs
However, the researchers expressed concern that sharing such information remains a challenge due to the absence of clear guidelines on how to handle sensitive genetic data.
They noted that genetic data can reveal extensive information about an individual and their family, including DNA details and predispositions to certain diseases, which could lead to misuse or discrimination if improperly shared.
Prof. Erisa Mwaka, another bioethicist at Makerere University, explained that Uganda’s regulatory framework remains inadequate for such research, as existing guidelines are too generic and fail to address how sensitive information should be handled.
Dr. Nabukenya said the new guidance provides a systematic process through which genetic data can be shared responsibly, minimizing ethical and social risks.
The scientists also raised concern that while Uganda is making progress in genetic research, the country lacks professionals trained in genetic counseling—a specialized field that helps individuals understand and cope with genetic information.
Nabukenya noted that this profession does not yet exist in Uganda, yet in other countries, genetic counselors undergo at least three years of formal training to guide patients and families on the implications of genetic findings.
Meanwhile, institutions such as the Uganda Virus Research Institute (UVRI), Joint Clinical Research Centre (JCRC), Uganda Cancer Institute, and Government Analytical Laboratories are already engaged in genomic research.
However, experts say it remains unclear how these institutions share and release genetic data in the absence of a harmonized national framework.