Patient-held portable consent for reusing samples and data across studies
Patients would carry a digital consent that says how their trial samples and records may be reused, so their contribution is not locked to one company or study and they decide who benefits from it.
A patient-controlled dynamic consent record, interoperable across trial sponsors and health systems, in which patients specify permitted secondary uses (academic research, commercial research, specific diseases, return of results) and can update choices. Sponsors adopt the record in trial consent, and the data and biospecimen commons honour it. This shifts the legal basis for reuse from sponsor-controlled contracts to patient authorisation, unblocking most of the reuse that current bilateral contracts prevent, and gives patient groups negotiating power over how their collective contribution is used. Count Me In, the Metastatic Breast Cancer Project and the UK's Our Future Health show patients consent broadly when asked directly.
- Secrecy and intellectual property block collaboration · Companies with complementary drugs rarely test them together, and data that could answer questions stays locked up.
- Patients lack understanding, navigation and agency · Most patients cannot understand their options, find trials, or push back, so decisions are made for them.
- Data silos · Records, scans, genomes and outcomes sit in separate systems that cannot talk. Every patient's experience is lost to the next.
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