Gross is an assistant professor of obstetrics, gynecology and reproductive sciences at the University of Pittsburgh and an affiliate assistant professor at Johns Hopkins Berman Institute of Bioethics. When patients participate in research studies, their names and identifying features are taken off of their samples. But the problem, Gross told Technical.ly, is that should a researcher discover an illness or genetic marker for future diseases, they can’t let the patient know. So, the doctors and the hospitals they work for can use their medical information to learn, but the patient goes uninformed about information that could be in some cases life saving.
“We take their names off of their data off of their samples [and] we say it’s to protect their privacy, but what it means is that if you learned something that could help them, you’re not allowed to tell them,” Gross said. “Functionally what that means is that a whole swath of our population is essentially exploited by this process with no hope of really ever achieving access to the best, or the most cutting-edge therapies.”
After years of studying bioethics and historical medical disparities, Gross believes there’s a perhaps unexpected way to balance research with patient care: nonfungible tokens, or NFTs. In the case of heny inc, a decentralized biobank and university-affiliated startup of which Gross is the founder and CEO, NFTs will be used in a soon-to-be beta-tested app focused on allowing breast cancer patients to remain connected to their biopsy results.
A concept that’s known most commonly for being something the internet loves or hates, NFTs are cryptographic tokens that exist on a blockchain and cannot be replicated. These tokens often represent real-world items like artwork and real estate. But in this context, Gross would like to see NFTs to represent biospecimens to encourage accountability while making it so that patients can keep their privacy, while also maintaining access to information related to their samples.
Gross learned about blockchain technology in 2016, a few years later she completed a postdoctoral fellowship in bioethics at the Berman Institute. The more she worked in the field and heard stories from her colleagues of families who could’ve been helped by the knowledge researchers had found related to gene mutations and hereditary illnesses, the more she realized that blockchains technology which NFTs use and allows digital information to be recorded and distributed, but not edited, could be the answer.
“I’ve been writing papers about this since 2017 [or] 2018,” Gross said, “about the potential role of blockchain entities and how they can address these fundamental disconnects in our healthcare system and how we treat people. It’s not just unethical, it’s also inefficient and ineffective.”
Her team at heny includes Dr. Adrian Lee, director of Pitt and UPMC’s Institute for Precision Medicine; Jeff Kahn, director of the Berman Institute; and Dr. Robert Miller, who leads the design of clinical trials for the Mayo Clinic Proton Beam Therapy Program. Serving as advisors and research collaborators are Balaji Palanisamy, a blockchain and privacy-aware computing expert at Pitt’s School of Computing and Information; Mario Macis, a professor of economics at Johns Hopkins University; and Amelia Hood, a faculty member at Hopkins focused on policy.
With their support, a pilot version of the app will launch in October just in time to celebrate Breast Cancer Awareness Month. The app will “enable breast cancer patients to track and learn about research on their donated tumor [and] tissues,” Gross said, and she hopes it will serve as a prototype for future NFT use in bioethics.
Although from a bioethics perspective NFTs might prove useful, from an environmental standpoint, over the years NFTs have gained a fair amount of critics in part due to the negative environmental impact as the production process is energy intensive, which leads to carbon emissions being released. While Gross understands the concern, she feels that weighed against the cost of patients being ignorant about information related to their health, for the time being, the good outweighs the bad.
“If you put it in the context where you have to start balancing it against the fact that right now, there’s patients who might have the BRCA gene [and] diseases where they might qualify for treatments that we might have learned about [and] right now, we’re just keeping that to ourselves in the research lab well, suddenly, the environmental impacts, whatever they may be, become a little bit more trivial,” Gross said. “And certainly [that’s] worth putting in perspective of what we’re what we’re using it for.”Atiya Irvin-Mitchell is a 2022-2023 corps member for Report for America, an initiative of The Groundtruth Project that pairs young journalists with local newsrooms. This position is supported by the Heinz Endowments.
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