Decentralized Biobanking to Empower Patient Engagement in Biospecimen Research: Operational Feasibility Case Study
We established operational feasibility for the first step toward decentralized biobanking, informed by requirements to manage expectations, workflows, and power dynamics. Our technical solution demonstrated robust participant engagement and compatibility with established biobanks, suggesting potential to build trust and align incentives and identifying next steps for communications, sustainability, and governance.
Authors
- Mario Macis (ORCID: https://orcid.org/0000-0001-6635-2752)
- Andrew Thomas DeWan (ORCID: https://orcid.org/0000-0002-7679-8704)
- J. S. Kahn
- Marielle S. Gross (ORCID: https://orcid.org/0000-0002-3009-4082)
- Robert C. Miller (ORCID: https://orcid.org/0000-0001-8932-2732)
- Vivian Altiery De Jesus
- Eve Budd
- William Sánchez (ORCID: https://orcid.org/0009-0009-8437-0386)
Institutions
- DePauw University (US)
- Binghamton University (US)
- Mayo Clinic (US)
- Johns Hopkins University (US)
- Johns Hopkins Medicine (US)
- Johns Hopkins Berman Institute of Bioethics (US)
- Indiana University School of Medicine
- Indiana University – Purdue University Indianapolis (US)
Publication Details
- Journal
- Biopreservation and Biobanking
- Published
- 2025-10-30
- DOI
- https://doi.org/10.1177/19475535251384429
- Primary Topic
- Ethics in Clinical Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00