JMIR Publications recently published “Fungible Tokens as a Blockchain Solution to Ethical Challenges for the Secondary Use of Biospecimens: Viewpoint” in JMIR Bioinformatics and Biotechnology in which the authors discuss how current practices of de-identifying human samples for research recall the treatment of Henrietta Lacks tissue in 1951. They highlight how current standards continue to free researchers and health systems from obligations to promote respect, beneficence and justice for patients.
This historical case illuminates the ethical challenges for secondary use of biospecimens, which persist in contemporary learning health systems. De-identification and broad consent attempt to maximize the benefits of care learning while minimizing burdens on patients and researchers, but the authors demonstrate how these strategies fall short of privacy, transparency, engagement, and justice .
The resulting supply chain for products based on human cells and tissues may therefore recapitulate the harm experienced by the Lacks family for all patients, past and present.
By convention at the then-segregated Johns Hopkins Hospital in 1951, tissue obtained during Henrietta Lacks’ cancer treatment was de-identified using the first 2 letters of her first and last name, allowing her tissue to be researched without your knowledge or explicit consent.
This solution transformed Henrietta Lacks’ cervical cancer into death-defying “HeLa cells.”
Although the world’s technical standards for de-identification have evolved, the spirit of de-identification that disconnected Mrs. Lacks, a poor black mother of 5, from her legacy remains immortalized in American law and is widely exploited by the current research company.
De-identification of biospecimens ‘checks the box’ of protecting privacy while allowing unrestricted secondary use of clinical data.”
Dr. Marielle Gross, University of Pittsburgh and Johns Hopkins
The authors of JMIR’s Bioinformatics and Biotechnology introduce the potential of blockchain technology to generate unprecedented transparency, engagement, and accountability in health system architecture learning without the need for de-identification. In particular, NFTs have the potential to embed the primacy of patient duty into our human tissue research supply chains by maintaining continuity of care for people, promoting learning and enabling efficient translation without compromising the privacy
Dr. Gross and co-authors concluded in their JMIR Publications Research Output that continued reliance on de-identification and broad consent for “secondary use” of biospecimens may create learning platforms that recapitulate historically exploitative practices of integrating the research and patient care.
Conversely, “HeLa cells are the original ‘use case’ for NFTs, as they demonstrate the imperative to maintain the provenance of non-expendable human-derived assets and the fiduciary duties of respective patients” .
Blockchain technology has the potential to bring about unprecedented transparency, engagement and accountability in learning health system architecture.
Representation of biospecimens with NFT can maximize efficiency, effectiveness and fairness in the future of learning health systems and warrants further exploration.
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Journal reference:
Gross, MA, et al. (2022) Nonfungible Tokens as a Blockchain Solution to Ethical Challenges for Secondary Use of Biospecimens: Viewpoint. JMIR Bioinformatics and Biotechnology. doi.org/10.2196/29905.