Abstract
The pandemic has highlighted the importance of sharing biobank data and also the way in which blockchain technology could help facilitate this process. However, legal issues about the regulation of blockchain technology still need to be resolved. The rules concerning personal data protection for research have proved to be ineffective, regardless of the technology used. Additionally, data security must be increased to prevent the loss of intellectual property. Despite the potential benefits of blockchain technology, regulatory uncertainties and the inadequacy of commonly applied standards limit its adoption.
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Notes
- 1.
Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation) (Text with EEA relevance), O.J. 4.5.2016 L 119/1.
- 2.
Confidential Consortium Framework. (n.d.). Microsoft Research. https://www.microsoft.com/en-us/research/project/confidential-consortium-framework/.
- 3.
European Parliament. Directorate General for Parliamentary Research Services (2019). Blockchain and the general data protection regulation: Can distributed ledgers be squared with European data protection law? Publications Office, p. 101. https://data.europa.eu/doi/10.2861/535.
- 4.
Communication from the Commission to the European Parliament and the Council Data Protection as a pillar of citizens’ empowerment and the EU’s approach to the digital transition—2 years of application of the General Data Protection Regulation COM/2020/264 final.
References
Albalwy F, Brass A, Davies A (2021) A blockchain-based dynamic consent architecture to support clinical genomic data sharing (consentchain): proof-of-concept study. JMIR Med Inform 9(11):e27816. https://doi.org/10.2196/27816
Basu M (2016, March 6) Estonia using blockchain to secure health records’. GovInsider (blog). https://perma.cc/EAF8-FRLQ
Choudhury O, Sarker H, Rudolph N, Foreman M, Fay N, Dhuliawala M, Sylla I, Fairoza N, Das AK (2018) Enforcing human subject regulations using blockchain and smart contracts. Blockchain in Healthcare Today. https://doi.org/10.30953/bhty.v1.10
Committee on Biological Collections: Their Past, Present, and Future Contributions and Options for Sustaining Them, Board on Life Sciences, Division on Earth and Life Studies, & National Academies of Sciences, Engineering, and Medicine (2020) Biological collections: ensuring critical research and education for the 21st century. National Academies Press, https://doi.org/10.17226/25592
Committee on Improving the Quality of Health Care Globally, Board on Global Health, Board on Health Care Services, Health and Medicine Division, & National Academies of Sciences, Engineering, and Medicine (2018) Crossing the global quality chasm: improving health care worldwide. National Academies Press, p 25152. https://doi.org/10.17226/25152
Digital Science, Van Rossum J (2017) Blockchain for research. Digital Science. https://doi.org/10.6084/M9.FIGSHARE.5607778
Evangelatos N, Upadya SP, Venne J, Satyamoorthy K, Brand H, Ramashesha CS, Brand A (2020) Digital transformation and governance innovation for public biobanks and free/libre open source software using a blockchain technology. OMICS: J Integr Biol 24(5):278–285. https://doi.org/10.1089/omi.2019.0178
Giordano MT (2021) Blockchain and the GDPR: new challenges for privacy and security. In: Cappiello B, Carullo G (eds) Blockchain, law and governance. Springer International Publishing, pp 275–286. https://doi.org/10.1007/978-3-030-52722-8_20
Goisauf M, Durnová AP (2019) From engaging publics to engaging knowledges: enacting “appropriateness” in the Austrian biobank infrastructure. Public Underst Sci 28(3):275–289. https://doi.org/10.1177/0963662518806451
Goncharov L, Suominen H, Cook M (2022) Dynamic consent and personalised medicine. Med J Aust 216(11):547–549. https://doi.org/10.5694/mja2.51555
Hazlegreaves S (2019, September 24) Distributive biobanking models: why biospecimens need blockchain. Open Access Government. https://www.openaccessgovernment.org/distributive-biobanking-models/73910/
Kaaniche N, Laurent M, Belguith S (2020) Privacy enhancing technologies for solving the privacy-personalization paradox: taxonomy and survey. J Netw Comput Appl 171:102807. https://doi.org/10.1016/j.jnca.2020.102807
Kim TM, Lee S-J, Chang D-J, Koo J, Kim T, Yoon K-H, Choi I-Y (2021) DynamiChain: development of medical blockchain ecosystem based on dynamic consent system. Appl Sci 11(4):1612. https://doi.org/10.3390/app11041612
Mamo N, Martin GM, Desira M, Ellul B, Ebejer J-P (2020) Dwarna: a blockchain solution for dynamic consent in biobanking. Eur J Hum Genet 28(5):609–626. https://doi.org/10.1038/s41431-019-0560-9
Nordberg A (2021) Biobank and biomedical research: responsibilities of controllers and processors under the EU general data protection regulation. In: Slokenberga S, Tzortzatou O, Reichel J (eds) GDPR and biobanking. Individual rights, public interest and research regulation across Europe. Springer, pp 61–89. https://doi.org/10.1007/978-3-030-49388-2
Özdemir V (2018) The dark side of the moon: the internet of things, industry 4.0, and the quantified planet. OMICS J Integr Biol 22(10):637–641. https://doi.org/10.1089/omi.2018.0143
Prictor M, Teare HJA, Bell J, Taylor M, Kaye J (2019) Consent for data processing under the general data protection regulation: could ‘dynamic consent’ be a useful tool for researchers? J Data Protect Priv 3(1) https://ora.ox.ac.uk/objects/uuid:f74babfc-a8d6-4709-8049-6a0756e97a71
Royal Society (Great Britain) (2019) Protecting privacy in practice: The current use, development and limits of privacy enhancing technologies in data analysis
Rupasinghe T, Frada B, Carsten R (2019) Blockchain based dynamic patient consent: a privacy-preserving data acquisition architecture for clinical data analytics. In: ICIS 2019 Proceedings, 2019. https://aisel.aisnet.org/icis2019/blockchain_fintech/
Shabani M (2019) Blockchain-based platforms for genomic data sharing: a de-centralized approach in response to the governance problems? J Am Med Inform Assoc 26(1):76–80. https://doi.org/10.1093/jamia/ocy149
Spector-Bagdady K, De Vries RG, Gornick MG, Shuman AG, Kardia S, Platt J (2018) Encouraging participation and transparency in biobank research. Health Aff 37(8):1313–1320. https://doi.org/10.1377/hlthaff.2018.0159
Vlahou A, Hallinan D, Apweiler R, Argiles A, Beige J, Benigni A, Bischoff R, Black PC, Boehm F, Céraline J, Chrousos GP, Delles C, Evenepoel P, Fridolin I, Glorieux G, van Gool AJ, Heidegger I, Ioannidis JPA, Jankowski J et al (2021) Data sharing under the general data protection regulation: time to harmonize law and research ethics? Hypertension 77(4):1029–1035. https://doi.org/10.1161/HYPERTENSIONAHA.120.16340
Wee R, Henaghan M, Winship I (2013) Dynamic consent in the digital age of biology: online initiatives and regulatory considerations. J Prim Health Care 5(4):341–347. http://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=104169296&site=ehost-live&scope=site
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Zatti, F. (2023). Blockchain and Dynamic Consent. In: Colcelli, V., Cippitani, R., Brochhausen-Delius, C., Arnold, R. (eds) GDPR Requirements for Biobanking Activities Across Europe. Springer, Cham. https://doi.org/10.1007/978-3-031-42944-6_7
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