Ugandan scientists are increasingly conducting genetic tests on people living with HIV (PLHIV) to understand how their genes interact with HIV/Aids drugs and to guide treatment decisions.
However, a new report shows that although 98 percent of study participants want access to their test results, many are not receiving them.
Presenting the findings at Makerere University Medical School on Wednesday, Dr Sylvia Nabukenya, the study’s lead researcher, recommended that participants should be given ‘valuable and clinically actionable’ pharmacogenomic test results to help improve their care.
Pharmacogenomics – the study of how an individual’s genes affect drug response – enables health workers to prescribe the most effective drugs and minimise adverse reactions. ‘Returning pharmacogenomic results involves giving participants clear information on how genes interact with drugs,’ Dr Nabukenya said. ‘This helps them understand their own biology and make informed treatment decisions.’
Uganda currently has about 1.5 million people living with HIV. Dr Nabukenya noted that some patients may need to switch to alternative, often more expensive, drugs based on their genetic profile.
‘They deserve to know why a treatment change is necessary,’ she added.
Issue
The report found that many scientists hesitate to share test results because of the technical complexity of genetic information, lack of translated terminology, and concerns that results could cause anxiety or highlight treatment options unavailable under public health programmes.
Interviews with scientists and community leaders revealed that returning results fosters trust, respect, and hope among participants,especially those managing long-term conditions like HIV.
‘It is a symbol of reciprocity,’ one community leader said, adding that it encourages greater engagement between researchers and participants.
Dr Nabukenya also launched new national guidelines developed to help researchers and institutions safely return pharmacogenomic results. The framework emphasises clear communication, counselling, and linkage to care for participants receiving complex genetic information.
The guidance was developed with input from geneticists, bioethicists, research ethics committees, and PLHIV representatives from several institutions, including the Makerere University Infectious Diseases Institute, Baylor Uganda, TASO, MUJHU, and UCWRU.
‘This will not only support researchers and clinicians in communicating results but also empower participants to become co-creators of knowledge and active decision-makers,’ Dr Nabukenya said.