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Dynamic governance: A new era for consent for stem cell research
Rosario Isasi1, Heidi B Bentzen2, Morris Fabbri1
1Interdisciplinary Stem Cell Institute and Dr. John T. Macdonald Foundation Department of Human Genetics, Miami, FL, USA.
Stem Cell Reports
|August 16, 2024
Summary
Dynamic informed consent (IC) models and participatory platforms can improve governance for human pluripotent stem cell research. These approaches address challenges posed by scientific advancements and e-health data processing.
Area of Science:
- Biomedical research
- Stem cell science
- Bioethics
Background:
- Current governance frameworks for human pluripotent stem cells (SC) face challenges from scientific advancements like SC-derived embryo models and organoids.
- E-health platforms necessitate a re-evaluation of traditional informed consent (IC) models due to transformations in data processing.
Purpose of the Study:
- To explore the benefits and challenges of implementing dynamic informed consent (IC) and governance models for human pluripotent stem cell research.
- To identify participatory research platforms as tools for enhancing engagement and decision-making in SC research governance.
Main Methods:
- Review of European initiatives piloting dynamic IC for biobanking and SC research.
- Analysis of challenges and benefits associated with dynamic IC and governance in the context of evolving scientific and data landscapes.
Main Results:
- Participatory research platforms facilitate longitudinal engagement and interactive decision-making.
- Dynamic IC models offer a potential solution to adapt consent processes for complex biospecimens and e-health data.
Conclusions:
- Dynamic IC and participatory platforms are crucial for adapting research governance to scientific and technological advancements in stem cell research.
- Implementing dynamic IC requires careful consideration of ethical and practical challenges to ensure robust governance.
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