Pitt Startup Building Blockchain-Based Biobank for Patients
New Approach Gives Patients Ownership of Their Bio-specimens
Nobody would put money into a bank account that they couldn’t trace.
Marielle Gross does not believe people should behave any differently with their biological samples stored in a biobank.
Gross, assistant professor of obstetrics, gynecology and reproductive sciences and an affiliate member of the University of Pittsburgh Center for Bioethics and the Law, is championing a new personalized approach to biobanking.
The status quo is for samples to be de-identified from the individuals to protect their privacy. She is applying blockchain technology to enable individuals to track the use of their data, learn about their contribution to science, and to be contacted if research uncovers a disease diagnosis or suggests new treatments that could improve or save their lives. If the samples are commercialized, this approach also can ensure that patients share in any profits derived from their body – all while maintaining privacy.
“The underlying ethos of my work is that the future of human rights requires decentralized ownership of the web. The physical and digital world are increasingly indistinguishable. A decentralized approach to management of biosamples optimizes efficiency and ethics of their use,” Gross said.
Gross is putting her bitcoin where her mouth is. She has launched an app for both the Android and Apple (invite only for now) that can allow people to access their bio-samples via NFTs (non-fungible tokens), or digital identifiers that can’t be copied, substituted, or subdivided. The seeds for this project were planted during Gross’s postdoctoral fellowship, in which she focused on deidentification, structural justice and blockchain technology at the Berman Institute at Johns Hopkins University, where she maintains a secondary faculty appointment.
Gross said that it was after arriving at Pitt and meeting Adrian Lee, Professor of Pharmacology & Chemical Biology and Director of the University of Pittsburgh Precision Medicine Institute, that she felt the need to get her idea out into the world. Lee, for his part, said he was intrigued by Gross’s idea and he remains a dedicated member of the project.
“As a breast cancer researcher, I am passionate about translational studies which may eventually help patients,” Lee said. “I believe that using new technologies, such as blockchain, we can safely keep the link between patients’ identify and their bio-samples and thus increase their engagement in research and hopefully return key results. In the end these approaches are critical to us achieving precision medicine.”
With Lee on board, Gross set out to build a cross-disciplinary team to bring the idea to life. Needing an expert in privacy-aware and blockchain-based systems, she found Balaji Palanisamy, associate professor at the Pitt School of Computing and Information, who developed several key aspects of the core technological innovation for the use of NFTs for biobanking and a system architecture for deploying the framework compatible with existing biobanking and research protocols.
“This is a very compelling use case for NFTs. If biobanks start adopting our NFT-based solutions, it can significantly empower patients and enable researchers to find the most relevant biospecimens for their research studies,” he said.
Gross has formed a startup company, HENY Inc., around her technology. The Pitt Innovation Institute filed a utility patent application on the intellectual property for which Gross and Palanisamy are co-inventors. Gross said she is eager to expand the HENY biobank beyond the initial focus on breast cancer.
Lee provided the connection for the beta users for her app via the Pitt’s Breast Disease Research Repository, which has an almost 20-year collection of samples.
“The core of the app is a bio-wallet that shows the individual’s samples within the context of the biobank. We’re re-framing research participation as membership in an investment collective, a token-based decentralized autonomous organization pooling bio-assets that positions patients as co-investigators,” she said.
One of the first to sign up to put their specimens into the new app is Chris Needles of Pittsburgh, a two-time survivor of metastatic cancer who has been cancer-free since 2010 and has become a committed advocate for cancer research ever since.
Needles said she is not interested in possible compensation if research on her specimens lead to a therapeutic breakthrough.
“I am more interested in being able to see how my specimens are used in research. If they can help at least one person, it will do more good for me than money possibly could.”
Emily Parise grimly jokes that over the past 9.5 years she has honed her skills as a “professional cancer patient” after being first diagnosed with breast cancer at age 29, then a brain tumor five years ago. She learned of the HENY app through 412 Thrive, a local advocacy group for those with breast cancer or genetic mutations founded by cancer survivor Samantha Moatz from Whitehall in Pittsburgh’s South Hills.
“You can be the victim or be the advocate,” Parise said. “With this new app, it’s nice to have your own way of knowing what’s going on with your disease and keep track of your own story. As we look forward to the day when cancer can be managed as a chronic illness and not a death sentence, I’m happy to participate in anything that advances research and patient rights.
Gross believes that her approach to empowering individuals like Needles and Parise to take ownership of their health data will be also provide benefits to researchers.
She pointed out that approximately 90 percent of bio samples go unused. She said people in the app’s decentralized biobank can pool their samples to attract researchers in the therapeutic area where they have a mutual interest to spur new research.
As it currently stands, researchers studying individual patients may lack access to the data or samples they need and have no way to communicate with their de-identified subjects. Gross said the HENY platform will allow researchers to provide collective and individual level feedback to the patients whose samples they use without compromising patient privacy.
The platform accelerates research by allowing patients to directly share information with researchers, eliminating middlemen while still providing auditability and ethical oversight. This model also expands opportunities to collaborate with other industry or academic researchers, overcoming barriers and improving the utility of existing samples at Pitt.
“Our sense of our ownership of our physical selves is profound and universal. But it does not yet extend into the digital realm” Gross said. “The ethical imperative to build this new system is strongest in the realm of health data because of the potential clinical relevance of research on your samples. The foundation of web3 could be built by closing gaps in the current healthcare system.”
Gross’s has been supported by the Emerson Collective, a think tank focused on education, health and the environment, as well as the Beckwith Institute, an endowed fund at UPMC which supports efforts to improve patient experience and deliver superior clinical outcomes.
Individuals can learn more or sign up for the pilot of the decentralized biobanking (de-bi) app at de-bi.com. Biobanks and research programs interested in being included on the wait list for expanding the pilot, email the team at hello@heny.co, or visit heny.co to learn more.