“De-identification is the process by which a person’s sample is altered so that it cannot be used to identify them during research. However, her app allows patients to stay connected to their samples by tracking use of their data and being notified if the research potentially discovers a new treatment that could save lives.”
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“Marielle Gross writes: It’s time to change the paradigm to allow patients to track their contributions to biomedical research.”
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“In its first semester, the ILA course students assisted Pitt-affiliated biotech start-up de-bi, co., a new company working at the intersection of web3, life science, and digital health. The de-bi app applies blockchain technology to enable individuals to track the use of their biosamples, learn about their contribution to science, and be contacted if necessary.”
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“Currently the app is a part of a pilot program launched in October 2022 at the Johns Hopkins Berman Institute of Bioethics and the University of Pittsburgh’s Institute for Precision Medicine.”
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“ While obtaining an individual's informed consent has become standard procedure before the use of tissues in medical research, many patients still don’t know what happens to their samples. Now, a new phone-based app is aiming to change that.”
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“At the end of the day, people’s lives could be saved [with] a pathway from the research lab back to the patient,” Gross points out. “And so that’s what we’re building.”
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