Tissue donors never knew who used their samples or how. For the first time, tissue donors are using blockchain technology to track how scientists use their samples through a pilot program that was launched by faculty at Johns Hopkins Berman Institute of Bioethics and breast cancer researchers at the Institute for Precision Medicine (a joint collaboration between the University of Pittsburgh and the University of Pittsburgh Medical Center [UPMC]).1,2
“We believe that patients have a right to know how their tissue samples are used. This transparency is a matter of respect for them as donors to the research enterprise,” says Amelia Hood, MA, a researcher at the Johns Hopkins Berman Institute of Bioethics.
Participants will receive a non-fungible token (NFT) to allow them to follow their samples while keeping their identities anonymous to researchers. “As we move toward an era of precision medicine, research findings are becoming relevant to patient care more frequently and more quickly than in the past,” Hood notes.
This is especially true for cancer patients. “The app serves as a platform for increased transparency of research activities and provides critical infrastructure for the return of research results that may inform healthcare decisions,” Hood explains.
For example, a researcher studying genomics might find a genetic result that can inform a patient’s care. A researcher testing drugs might find a patient’s tumor reacts to a certain drug. “These results are most timely in research on ‘fresh’ tissues, which are donated to research immediately after surgery,” Hood notes.
Researchers are in the process of inviting roughly 10,000 patients who agreed to donate excess tissue to the Breast Disease Research Repository at UPMC to participate in the program. “Patients want this, and those within our existing networks are in line to sign up. To them, it’s a no-brainer,” Hood reports.
Patients appreciate the opportunity to learn about their donations to research. Through the app, patients can interact with researchers, provide ideas for research, or provide supplemental data directly to researchers. “In the future, we hope to be able to connect all patients with information about their donated samples,” Hood says.
REFERENCES
1. Smith J. Donors can track how science uses their tissue but stay anonymous. Johns Hopkins University Hub. Oct. 25, 2022.
2. Yeomans M. Token identity. University of Pittsburgh. Oct. 26, 2022.
Tissue donors never knew who used their samples or how. For the first time, tissue donors are using blockchain technology to track how scientists use their samples through a pilot program.
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