Ethical guidance in research is underpinned by the need to show respect for study participants by upholding autonomy in participant decision-making, and confidentiality and protection of individual rights, privacy and interests, yet decision-making could also be influenced by the participant’s sociocultural and belief systems. This calls for a more Africanised approach to research ethics where these values and beliefs are upheld. While national and international ethics guidelines do exist, there is little evidence that such a paradigm shift in research ethics (...) is adequately interrogated in the teaching and learning curricula in higher education, where research skills are developed and nurtured. Critical reflection is used to highlight opportunities to stimulate learning and debates underpinned by humanised pedagogy in higher education. (shrink)

Precision medicine is an emerging approach to treatment and disease prevention that relies on linkages between very large datasets of health information that is shared amongst researchers and health professionals. While studies suggest broad support for sharing precision medicine data with researchers at publicly funded institutions, there is reluctance to share health information with private industry for research and development. As the private sector is likely to play an important role in generating public benefits from precision medicine initiatives, it is (...) important to understand what the concerns are and how they might be mitigated. This study reports outcomes of a deliberative method of citizen engagement in Singapore that asked whether sharing precision medicine data with private industry would be permissible, and if so, under what circumstances. Findings from this citizens’ jury suggest sharing with industry would be permissible under certain conditions that are set out in nine recommendations. Implications of the recommendations and their underlying assumptions for policy decision makers are discussed. This study aligns with prior international studies which found conditional acceptance for data sharing with private industry, a public benefit requirement, specific reluctance to share with insurance companies and an emphasis on accountability and transparency to demonstrate trustworthiness. However, our results differ from prior studies in that opt-in consent did not dominate the deliberations as jurors were able to set it aside as an assumed prerequisite for participation in a precision medicine programme. (shrink)