Dr Edilene Lopes Mcinnes1
1The University of Adelaide, Australia
Biography:
I am a social and public health researcher with expertise in engaging the public and patients in research and policy initiatives. My focus is on co-designed and collaboratively developed initiatives aimed at marginalised populations and that strive to incorporate the values of all involved parties.
Abstract:
Aims:
This presentation focuses on the findings of interviews and a prospective focus group from the EOAR project (Enabling Openness in Australian Stem Cell Research), which explores stakeholders’ perspectives on research with induced Pluripotent Stem Cells (iPSCs) in Australia. Key themes discussed include informed consent, sharing of biomaterials and data, and research commercialisation.
Methods:
Semi-structured interviews with 48 stem cell scientists, 17 patient organisation representatives, eight clinician researchers and a prospective focus group with ten patients who donated stem cells for research.
Results:
Stem cell scientists and clinician researchers emphasise the relevance of providing comprehensive information to research participants, complying with ethics committees’ requirements, and maintaining ethical standards when sharing data or cell lines with collaborators. Patient organisation representatives raised concerns related to the limitations of current informed consent practices, particularly the lack of accessible information about complex research projects and the uncertainty of future research endeavours. These participants recommended developing new mechanisms to allow patients to have more control over how their biomaterials and data are managed, as well as establishing ongoing interactions with donors and patient organisations to inform future research governance arrangements. The focus groups with donors (to be conducted in August 2024) will explore these issues in more depth with patients who donate stem cells for research. Results will be available at the time of the conference.
Conclusion:
The EOAR research team will use these results to develop a framework to increase transparency and openness in stem cell-based research and therapies in Australia.