Navigating medical authority and fatwa in genetic decision-making: an empirical bioethics study in Malaysia

Advances in genetic science expand diagnostic possibilities while raising complex ethical questions regarding scientific authority and moral legitimacy. In Muslim societies, genetic decision-making may require individuals and stakeholders to navigate medical advice and religious guidance, particularly in sensitive matters involving the sanctity of life and familial obligations. This study explored how stakeholders navigate medical authority and religious guidance in genetic decision-making within the Malaysian context. This qualitative study utilised semi-structured interviews with 23 purposively recruited stakeholders, including medical professionals and religious scholars, involved in genetics-related issues in Malaysia. Data were collected, transcribed verbatim, and analysed using an inductive thematic approach to explore how respondents navigate the intersection of scientific evidence and religious authority. Three main themes emerged: medical authority as a source of epistemic trust, fatwa as a source of moral legitimation, and fragmented integration between scientific and religious authority. Respondents associated their reliance on medical experts with the technical complexity of genetic information and the difficulty of interpreting it without specialised knowledge. Simultaneously, religious guidance provided moral reassurance in sensitive decisions involving ethical uncertainty and questions of religious permissibility. Respondents reported uncertainty when medical and religious guidance was encountered through separate channels, and they associated this uncertainty with the absence of a clear mechanism for applying the two sources together. Among the stakeholders interviewed in this study, genetic decision-making within the Malaysian Muslim context was described as involving an interaction between medical authority and religious legitimacy. This study contributes to empirical bioethics by detailing how stakeholders navigate dual sources of authority. The findings highlight respondents’ perceived value of improved coordination between medical and religious guidance. In light of these findings, integrated guidance involving both medical and religious expertise warrants further participatory exploration through co-design, feasibility assessment, and empirical evaluation.