Ethical, Legal, and Social Implications of Decentralized Science (DeSci) in Genomics (Excerpt)
- Steven Massey, Ph.D.
- Mar 30
- 5 min read
The following is an excerpt from a forthcoming publication on “Decentralized Science” by Dr. Steven Massey, Dr. Miriam Stankovich, and Samy Kebaish, M.Sc., MSDS.
Although genomic data were initially generated by few research institutions, the introduction and spread of the internet, coupled with iterative advances to hardware and software, permitted increased availability and interpretability of such data. This led to the inevitable development of “computational genomics” in the 1990s, a byproduct of the ability for principles of molecular biology, genetics, and evolutionary principles to be distilled discreetly into a set of rules used to translate information encoded within genetic material. Such developments have facilitated numerous use cases, ranging from scientific research (e.g. the elucidation of cellular signaling mechanisms), to commercial services, such as direct-to-consumer (DtC) genetic testing. Adjoining the implementation of such datasets has been a growing movement called “open science.” Inspired by “open-source software,” the free and transparent exchange of knowledge and collaboration in computer science, open science aims to make scientific research and its dissemination democratized, and accessible.
Recently, a derivative of open science has emerged, termed “Decentralized Science,” or DeSci (Figure 1). DeSci, so-called due to its decentralized nature, leverages Web 3.0 and blockchain technologies to confer the unique ability to disseminate scientific information broadly across digital networks, incorporating novel mechanisms of support and involvement, including voting, IP sharing, and funding mechanisms. One of the first movers in the space was a project to sequence the cannabis genome (McKernan et al., 2022). Subsequently, several decentralized autonomous organizations (DAOs) have arisen, such as vitaDAO (www.vitadao.com), which supports longevity research, valleyDAO (www.valleydao.bio), which supports green technologies, athenaDAO (www.athenadao.co), which supports women's health research, labDAO (labdao.xyz), which supports computational biology, and hairDAO (www.hairdao.xyz), which supports research into balding. There are also nascent projects designed to develop DeSci infrastructure, with an emphasis on Web3 tools. For example, Molecule (www.molecule.xyz) tokenizes Intellectual Property (IP) for the BioTech industry, while GOSH aims to provide decentralized repository infrastructure for DeSci (gosh.sh).
These methods have the potential to democratize the research process, allowing for a more inclusive participation from across the globe, and potentially change the course of scientific collaboration and access.
Yet, despite the enthusiasm for DeSci’s underlying technologies, it has also been mired by serious concerns. Particularly in the setting of genomics, there are questions as to the legal (e.g. intellectual property rights), social (e.g. impact on minority groups), and ethical implications (e.g. citizen science), along with uncertainty as to its potential impact on the scientific community and broader society. As it stands, even in 2025, DeSci remains largely unchartered and ambiguous, reflecting the exploratory stage of applying blockchain and Web3 to genomics, and the challenges due to its multidisciplinary nature.
For example, one of the primary legal concerns of DeSci revolves around data privacy and security. Decentralized genomics projects often involve sharing sensitive genetic information across a network of participants, which could be vulnerable to breaches if not properly safeguarded. Ensuring the confidentiality and integrity of this data is paramount, as unauthorized access could lead to misuse of genetic information, discrimination, or even genetic theft. That is, genetic data is inherently personal and subject to stringent regulations ensuring its protection and privacy. Legislation such as the General Data Protection Regulation (GDPR) in Europe and the Health Insurance Portability and Accountability Act (HIPAA) in the United States set strict guidelines on the handling of human genetic data, but the decentralized nature of crowd-sourced projects poses unique challenges in compliance and enforcement.
Specific to the GDPR, this regulation has significantly influenced how personal data is processed across various sectors (Staunton et al., 2019). Although DeSci confer the ability to adhere to GDPR guidelines by incorporating blockchain's cryptographic protection and enhanced security protocols, a contentious issue arises concerning the right to data erasure stipulated by GDPR and the inherent immutability of blockchain data. The regulation, through Articles 16 and 17, presupposes the possibility of data modification or deletion to meet legal obligations, a provision seemingly at odds with blockchain’s unalterable data feature meant to ensure data integrity and trust (Mitchell et al., 2020). Furthermore, the European Parliamentary Research Service (2019) is evaluating whether data typically stored on distributed ledgers, even if encrypted or hashed, qualifies as personal under GDPR. Striking a balance between confidentiality and sharing of genomic data is complex, and current invocations in the research context are essential areas of research.
Accordingly, much work needs to be done in this area of research, for which the authors of this article are collaborating towards clarifying the ethical, legal and social implications, positive and negative, as DeSci becomes a more prevalent part of our daily lives.
References
Ding, W., Wang, X., Garibaldi, J., Teng, S., Rudas, I., & Olaverri-Monreal, C. (2022). The DAO to DeSci: AI for free, fair, and responsibility-sensitive sciences. IEEE Intelligent Systems, 37(2), 16–22. https://doi.org/10.1109/MIS.2022.3167070
European Parliamentary Research Service. (2019). How blockchain technology could change our lives. https://www.europarl.europa.eu/RegData/etudes/IDAN/2017/581948/EPRS_IDA(2017)581948_EN.pdf
Mitchell, C., Ordish, J., Johnson, E., Brigden, T., & Hall, A. (2020). The GDPR and genomic data: The impact of the GDPR and DPA 2018 on genomic healthcare and research. PHG Foundation. https://www.phgfoundation.org/report/the-gdpr-and-genomic-data
Mittelstadt, B. D., & Floridi, L. (2016). The ethics of big data: Current and foreseeable issues in biomedical contexts. Science and Engineering Ethics, 22(2), 303–341. https://doi.org/10.1007/s11948-015-9652-2
Staunton, C., Slokenberga, S., & Mascalzoni, D. (2019). The GDPR and the research exemption: Considerations on the necessary safeguards for research biobanks. European Journal of Human Genetics, 27(8), 1159–1167. https://doi.org/10.1038/s41431-019-0386-5
Let me know if you need in-text citation help or want these converted into LaTeX.
About the Authors
Dr. Steven Massey is a bioinformatician, molecular evolutionist and genomicist at UPR - Rio Piedras. Dr. Massey's lab works in the fields of bioinformatics, metagenomics and genomics, complexity and molecular evolution. His research entails using comparative genomics to understand the molecular evolution and pathogenesis of microbial pathogens, simulation studies to investigate the emergence of beneficial traits in biological systems and metagenomics to analyze microbial populations in some of unique habitats in Puerto Rico.
Dr. Miriam Stankovich is a Senior Principal Digital Policy Specialist, with expertise in Intellectual Property, Data Governance, and the Regulation of Emerging Technologies, such as AI. Dr. Stankovich holds a PhD from the Institute of Economics, University Ss Cyril and Methodius, Skopje, Macedonia. She is also a holder of an LL.M. degree in International Intellectual Property Law from the Chicago-Kent College of Law, Illinois Institute of Technology, where she finished first in her class in Spring 2010. She has been a Visiting Scholar at the Sanford School of Public Policy at Duke University, for which she has won the World Bank Robert McNamara fellowship. She is also a recipient of a Centre for International Cooperation and Development (CICOPS) scholarship from the University of Pavia, Italy. Dr. Stankovic has also been a Fulbright Fellow and a Visiting Scholar at Duke University School of Law, researching the legal aspects of technology transfer as a factor for economic growth of developing countries. She already holds an LL.M. in International Business Law granted by the Central European University, Budapest,
Samy Kebaish is a Research Associate in AI at Tambourine Innovation Ventures, and currently a doctoral student at GWU in Artificial Intelligence & Machine Learning. He received his Masters in Data Science at the University of Virginia, which was preceded by a Masters of Science in Biotechnology with a Bioinformatics Concentration. He did his undergraduate studies at the University of Virginia, where he received his Bachelor of Science in Biochemistry, and his Bachelor of Arts in Cognitive Science with a Neuroscience Concentration.