From consent to participatory governance: The need for multi-stakeholder alignment in iPSC-based drug repurposing
Esther A.M. Bührman, Alain Geille, Martina C. Cornel, Wouter P.C. Boon, Vivi M. Heine, Tessel Rigter, SIMPATHIC Consortium · 2026
Read From consent to participatory governance: The need for multi-stakeholder alignment in iPSC-based drug repurposing by Esther A.M. Bührman, Alain Geille, Martina C. Cornel, Wouter P.C. Boon, Vivi M. Heine, Tessel Rigter, SIMPATHIC Consortium (2026) in the Tower of Babel, a free online library of public-domain works preserved in clean, searchable text. No sign-up. The full text is served as a plain-text file at a predictable URL, where text is present: https://antarctic-labs.com/tower-of-babel/pmc-13681317.txt.
Description
Esther A M Bührman and co-authors, writing for the SIMPATHIC consortium in 2026, study how stem cell research for rare brain diseases should be governed. The work uses lab-grown stem cells from patients to test whether known drugs can be reused, a fast route for rare diseases with few options.
The team interviewed experts from eight countries about practice on the ground. They found weak spots in how children and people with limited mental capacity are informed, and a lack of clarity on commercial use and on reporting results back. Murky rules slow joint work and delay clinical use. The authors call for open, shared governance where all parties, patients included, help set the rules as the science moves.
Catalog record
| CREATOR | Esther A.M. Bührman, Alain Geille, Martina C. Cornel, Wouter P.C. Boon, Vivi M. Heine, Tessel Rigter, SIMPATHIC Consortium |
|---|---|
| YEAR | 2026 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 62 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |