Establishing a blockchain-enabled Indigenous data sovereignty framework for genomic data
Open accessAbstract
Technological advances have enabled the rapid generation of health and genomic data, though rarely do these technologies account for the values and priorities of marginalized communities. In this commentary, we conceptualize a blockchain genomics data framework built out of the concept of Indigenous Data Sovereignty.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
Smart contracts can automatically enforce consent parameters, such as temporal limitations, usage restrictions, or benefit-sharing triggers.
“Additionally, smart contracts can automatically enforce consent parameters, such as temporal limitations, usage restrictions, or benefit-sharing triggers (Mackey et al. 2022).”
From Preventing AI extractivism: the case for braiding indigenous data justice with ABS for stronger AI data governance (2026) · cites this paper as Mackey et al. 2022
The Background says smart contracts can execute predetermined conditions for data access and sharing and can automate an agreement after community approval. It does not specify temporal limitations, usage restrictions, or benefit-sharing triggers as conditions those contracts enforce. (LLM, conf=0.88)
Experimental — accuracy not yet measured
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
Part of this paper’s reference list could not be split into single entries.
A framework for enhancing ethical genomic research with Indigenous communities
Claw, K. G., Anderson, M. Z., Begay, R. L., Tsosie, K. S., Fox, K., Garrison, N. A., Bader, A. C., Bardill, J., Bolnick, D. A., Brooks, J. L., et al. (2018) · Nature Communications · doi:10.1038/s41467-018-05188-3 · Cited by 493 · see citing works
Self-citationTandon, A., Dhir, A., Islam, A. K. M. N., & Mäntymäki, M. (2020) · Computers in Industry · doi:10.1016/j.compind.2020.103290 · Cited by 439 · see citing works
Conducting Research with Tribal Communities: Sovereignty, Ethics, and Data-Sharing Issues
Harding, A. K., HARPER, B. L., Stone, D., O’Neill, C., Berger, P. W., Harris, S. G., & Donatuto, J. L. (2011) · Environmental Health Perspectives · doi:10.1289/ehp.1103904 · Cited by 288 · see citing works
Miyachi, K., & Mackey, T. K. (2021) · Information Processing & Management · doi:10.1016/j.ipm.2021.102535 · Cited by 236 · see citing works
Self-citationCreating Synergies between Citizen Science and Indigenous and Local Knowledge
Tengö, M., Austin, B. J., Danielsen, F., & Fernández‐Llamazares, Á. (2021) · BioScience · doi:10.1093/biosci/biab023 · Cited by 169 · see citing works
The Illusion of Inclusion — The “All of Us” Research Program and Indigenous Peoples’ DNA
Fox, K. (2020) · New England Journal of Medicine · doi:10.1056/nejmp1915987 · Cited by 142 · see citing works
Self-citationDoes Indigenous health research have impact? A systematic review of reviews
Kinchin, I., McCalman, J., Bainbridge, R. G., Tsey, K., & Lui, F. W. (2017) · International Journal for Equity in Health · doi:10.1186/s12939-017-0548-4 · Cited by 54 · see citing works
Horse, A. J. Y., & Huyser, K. R. (2021) · Journal of Population Research · doi:10.1007/s12546-021-09261-5 · Cited by 54 · see citing works
Around Him, D., Andalcio Aguilar, T., Frederick, A., Larsen, H., Seiber, M., & Angal, J. (2019) · American Indian and Alaska Native Mental Health Research · doi:10.5820/aian.2602.2019.71 · Cited by 40 · see citing works
MedRec: Medical Data Management on the Blockchain
Ekblaw, A., & Azaria, A. (2016) · Cited by 36 · see citing works
Melroy-Greif, W. E., Wilhelmsen, K. C., & Ehlers, C. L. (2016) · Drug and Alcohol Dependence · doi:10.1016/j.drugalcdep.2016.06.021 · Cited by 26 · see citing works
Unlocking First Nations health information through data linkage
Walker, J. D., Pyper, E., Jones, C. R., Khan, S. M., Chong, N., Legge, D., Schull, M. J., & Henry, D. A. (2018) · International Journal for Population Data Science · doi:10.23889/ijpds.v3i1.450 · Cited by 23 · see citing works
Tsosie, K. S., Claw, K. G., & Garrison, N. A. (2021) · The American Journal of Bioethics · doi:10.1080/15265161.2021.1968068 · Cited by 22 · see citing works
Self-citationRethinking Patient Data Privacy In The Era Of Digital Health
(2019) · Forefront Group · doi:10.1377/forefront.20191210.216658 · Cited by 21 · see citing works
Flagged first, then by citations
Cited by
Sorted by citations
Shiammala, P. N., Duraimutharasan, N. K. B., Vaseeharan, B., Alothaim, A. S., Al‐Malki, E. S., Snekaa, B., Safi, S. Z., Singh, S. K., Velmurugan, D., & Selvaraj, C. (2023) · Methods · doi:10.1016/j.ymeth.2023.09.010 · Cited by 57 · see citing works
Zhuang, Y., Shyu, C., Hong, S., Li, P., & Zhang, L. (2023) · Computers in Biology and Medicine · doi:10.1016/j.compbiomed.2023.106778 · Cited by 53 · see citing works
Oliva, A., Kaphle, A., Reguant, R., Sng, L. M. F., Twine, N. A., Malakar, Y., Wickramarachchi, A., Keller, M., Ranbaduge, T., Chan, E. K. F., et al. (2024) · GigaScience · doi:10.1093/gigascience/giae021 · Cited by 41 · see citing works
A framework for sharing of clinical and genetic data for precision medicine applications
Elhussein, A., Baymuradov, U. K., Phatnani, H., Kwan, J., Sareen, D., Broach, J. R., Simmons, Z., Arcila-Londono, X., Lee, E. B., Deerlin, V. M. V., et al. (2024) · Nature Medicine · doi:10.1038/s41591-024-03239-5 · Cited by 37 · see citing works
Microbiome ownership for Indigenous peoples
Handsley‐Davis, M., Anderson, M. Z., Bader, A. C., Ehau‐Taumaunu, H., Fox, K., Kowal, E., & Weyrich, L. S. (2023) · Nature Microbiology · doi:10.1038/s41564-023-01470-3 · Cited by 34 · see citing works
Self-citationCompeting interests: digital health and indigenous data sovereignty
Cordes, A., Bak, M., Lyndon, M., Hudson, M. L., Fiske, A., Celi, L. A., & McLennan, S. (2024) · npj Digital Medicine · doi:10.1038/s41746-024-01171-z · Cited by 29 · see citing works
Ethical hazards of health data governance in the metaverse
Kostick, K. M., & Rahimzadeh, V. N. (2023) · Nature Machine Intelligence · doi:10.1038/s42256-023-00658-w · Cited by 22 · see citing works
Māori Algorithmic Sovereignty: Idea, Principles, and Use
Brown, P. T., Wilson, D., West, K., Escott, K.-R., Basabas, K., Ritchie, B., Lucas, D., Taia, I., Kusabs, N., & Keegan, T. T. (2024) · Data Science Journal · doi:10.5334/dsj-2024-015 · Cited by 20 · see citing works
2024 Chinese guideline on the construction and application of medical blockchain
Chen, X., Cao, F., Wang, Q., Ye, Z., Chen, X., Ye, Z., Cao, F., Chen, W., Cui, W., Feng, D., et al. (2024) · Intelligent Medicine · doi:10.1016/j.imed.2024.09.002 · Cited by 13 · see citing works
Calac, A. J., & Mackey, T. K. (2025) · npj Digital Medicine · doi:10.1038/s41746-025-01902-w · Cited by 11 · see citing works
Self-citationBiological samples taken from Native American Ancestors are human remains under NAGPRA
Bader, A. C., Carbaugh, A. E., Davis, J. L., Krupa, K. L., & Malhi, R. S. (2023) · American Journal of Biological Anthropology · doi:10.1002/ajpa.24726 · Cited by 10 · see citing works
Bandeira, A., Gonçalves, L. H. D. N., Holl, F., Shaibu, J. U., Gonçalves, M. L., Payinda, R., Paudel, S., Berionni, A., WFPHA, Y., Purnat, T. D., et al. (2025) · JMIR Infodemiology · doi:10.2196/69474 · Cited by 9 · see citing works
Self-citationIndigenizing fungal biotechnology for planetary health: an opinion paper
Perez, R., Flores, W. K., Astolfi, M., Espinoza, U. J., Zimring, T. B., & Fox, K. (2025) · Fungal Biology and Biotechnology · doi:10.1186/s40694-025-00200-0 · Cited by 4 · see citing works
Self-citationWorking Ethically with Ancient DNA from Composites in the United States
Johnson, T., Thakar, H. B., Watkins, J. E., & Linderholm, A. E. (2024) · Advances in Archaeological Practice · doi:10.1017/aap.2023.32 · Cited by 6 · see citing works
Wang, C., Ming, X., Gao, X., & Zhang, X. (2024) · Advanced Engineering Informatics · doi:10.1016/j.aei.2024.103085 · Cited by 6 · see citing works
Sovereignty in the digital age Indigenous perspectives on health data and emerging technologies
Hurst, S., Dhein, K., Yracheta, J., & Mackey, T. K. (2026) · SSM - Qualitative Research in Health · doi:10.1016/j.ssmqr.2025.100698 · Cited by 7 · see citing works
Self-citationGenomics and Biodiversity: Applications and Ethical Considerations for Climate-Just Conservation.
Miner, S. A., & Thurman, T. J. (2024) · The Hastings center report · doi:10.1002/hast.4936 · Cited by 3 · see citing works
Getz, M. J., DeLouize, A. M., Madimenos, F. C., Uwizeye, G., Thayer, Z. M., McKerracher, L., la Mora, A. N., & Snodgrass, J. J. (2025) · American Journal of Human Biology · doi:10.1002/ajhb.70011 · Cited by 4 · see citing works
Lysaght, T., Ankeny, R. A., Brown, A. D. H., McWhirter, R., Nicol, D., Otlowski, M. F. A., Richards, B. J., & Newson, A. J. (2025) · npj Genomic Medicine · doi:10.1038/s41525-025-00492-6 · Cited by 4 · see citing works
Recent advances and future prospects for blockchain in biomedicine
Ni, E., Tang, X., Zhou, X., Lee, D. H., Elhussein, A., Knight, E., Gürsoy, G., & Gerstein, M. (2025) · Cell Reports Methods · doi:10.1016/j.crmeth.2025.101114 · Cited by 4 · see citing works
A Just Genomics Needs an ELSI of Translation
Halley, M. C., Olson, N. W., Ashley, E. A., Goldenberg, A. J., & Tabor, H. K. (2024) · The Hastings Center Report · doi:10.1002/hast.4938 · Cited by 4 · see citing works
Rakeiora Genomics Platform: a pathfinder for genomic medicine research in Aotearoa New Zealand
Rye, C. E., Puketapu-Watson, H., Wihongi, H., Aika, B. T., Macartney-Coxson, D. P., de Ligt, J., Print, C. G., Stabej, P. L. Q., Tsai, P., Curran, B., et al. (2025) · Journal of the Royal Society of New Zealand · doi:10.1080/03036758.2025.2469626 · Cited by 3 · see citing works
Arya, A., & Malik, A. (2025) · Medical & Biological Engineering & Computing · doi:10.1007/s11517-025-03480-1 · Cited by 2 · see citing works
Mackey, T. K., Calac, A. J., McMann, T., Miyachi, K., Hurst, S., Fox, K., Dillabaugh, B., Dhein, K., Ducheneaux, G., & Yracheta, J. (2026) · Journal of Medical Internet Research · doi:10.2196/90247 · Cited by 2 · see citing works
Self-citationA Delimitation of Data Sovereignty From Privacy
Pampus, J., & Heisel, M. (2025) · IGI Global eBooks · doi:10.4018/979-8-3693-9137-2.ch001 · Cited by 2 · see citing works
Integration of Blockchain Into Medical Data Security
Makinde, A. S., Agbeyangi, A. O., & Samuel, O. (2023) · Advances in healthcare information systems and administration book series · doi:10.4018/978-1-6684-8913-0.ch006 · Cited by 2 · see citing works
Blockchain Enforced Attribute based Access Control with ZKP for Healthcare Service
Lee, D., & Kim, H. (2024) · International journal of Computer Networks & Communications · doi:10.5121/ijcnc.2024.16308 · Cited by 2 · see citing works
Schulz, M., & Loewen-Colón, J. (2026) · AI & SOCIETY · doi:10.1007/s00146-026-02931-z · Cited by 1 · see citing works
“If It Don’t Talk, It's Not Whakapapa Data”: Conceptualising Whakapapa Data in a Digital Age
Tarapa-Dewes, E. P., & Kukutai, T. (2026) · Journal of the Royal Society of New Zealand · doi:10.1002/snz2.70016 · Cited by 1 · see citing works
Calac, A. J., McMann, T., Yracheta, J., & Mackey, T. K. (2026) · Frontiers in Health Services · doi:10.3389/frhs.2026.1731352 · Cited by 1 · see citing works
Self-citation2023 Beijing Health Data Science Summit
Chen, L., Qi, Y., Yang, T., Cheng, Y., Deng, L., Jiang, T., Zhao, W., Wang, S., Du, J., Wu, Y., et al. (2024) · Health Data Science · doi:10.34133/hds.0112
Implementing genomics research in developing countries: Common challenges, and emerging solutions
Reynolds, A. W., Lea, A. J., & Nieves-Colón, M. A. (2024) · Elsevier eBooks · doi:10.1016/b978-0-443-18546-5.00004-8
In Search of Durable Models for Research Consent in Emerging Computing Environments
Rahimzadeh, V. N. (2025) · The American Journal of Bioethics · doi:10.1080/15265161.2025.2470672
Advancing Indigenous Knowledge Research Epistemologies and Research Methodologies in LIS Research
Rugambwa, N. O., & Lyaka, M. (2026) · Advances in computational intelligence and robotics book series · doi:10.4018/979-8-2600-0434-0.ch009
Data as a relation: development of a blockchain-based platform for Indigenous data sovereignty
Mackey, T. K., Calac, A. J., McMann, T., Miyachi, K., Hurst, S., Fox, K., Dillabaugh, B., Dhein, K., Ducheneaux, G., & Yracheta, J. (2026) · The Lancet Digital Health · doi:10.1016/j.landig.2026.101070
Self-citationIndigenous Knowledge Systems and AI
Gupta, D., Gayratovich, E. N., Akishova, S., Rasulova, I., Sottarov, A., & Nazirjon, R. (2026) · Advances in computational intelligence and robotics book series · doi:10.4018/979-8-3373-7837-4.ch008
- Authors
- Mackey, T. K., Calac, A. J., Chenna Keshava, B. S., Yracheta, J., Tsosie, K. S., & Fox, K.
- Affiliations
- San Diego Supercomputer Center (US)
- University of California San Diego (US)
- Corresponding author
- Fox, Keolu
- Venue
- Cell
- Publisher
- Elsevier BV
- Published
- 2022-07
- Volume
- 185
- Issue
- 15
- Pages
- 2626-2631
- ISSN
- 0092-8674 (ISSN-L)
- OpenAlex
- W4286266880
- Cited by
- 36
- References
- 14
- Citations by year
- 2026: 8 · 2025: 10 · 2024: 12 · 2023: 6
- FWCI
- 6.93
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- www.elsevier.com/tdm/userlicense/1.0/ (tdm)
- www.elsevier.com/legal/tdmrep-license (tdm)
- www.elsevier.com/open-access/userlicense/1.0/ (vor, 385 d)
- doi.org/10.15223/policy-017 (stm-asf)
- doi.org/10.15223/policy-037 (stm-asf)
- doi.org/10.15223/policy-012 (stm-asf)
- doi.org/10.15223/policy-029 (stm-asf)
- doi.org/10.15223/policy-004 (stm-asf)
- Locations
- Cell (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Physical Sciences › Computer Science › Information Systems › Blockchain Technology Applications and Security
- Social Sciences › Health › Indigenous Health, Education, and Rights
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Race, Genetics, and Society
- Keywords
- blockchain, Indigenous data sovereignty, genomic data, health data, data governance, indigenous peoples, marginalized communities, data ownership
- MeSH terms
- Blockchain, Technology, Computer Security, Genomics
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review