What Role Do HIV Patients Want in Decisions About Their Genetic Research Results?

When it comes to making decisions about sharing individual genetic research results, people living with HIV have strong opinions. A study in Uganda asked 221 people receiving HIV care what role they wanted in deciding how to get information from genetic research. Most participants (122, 55. 2%) wanted to be part of the decision-making process with researchers. Another 67 (30. 3%) wanted to be in charge of decisions, while 32 (14. 5%) were happy to let researchers decide. Several factors played a role in who wanted to be more involved in decisions. Being married made someone less likely to want to be in charge. Having past research experience and being religious made someone more likely to want to be actively involved. Some people wanted to take the lead because they had experience with HIV medications and research. Others wanted researchers to make decisions for them because they were unsure about the link between genes and medications or trusted researchers to make the right call. All in all, the study shows that HIV patients want a say in how genetic research affects them. Researchers should give clear, simple information about genetic research and its implications so patients can make informed choices. Participants should be aware that they can impact the process by sharing their thoughts and concerns. Researchers should be mindful of the power they hold in these decisions and ensure that patients' voices are heard.