Unlocking the Potential of Organoid Regulation to Protect Personal Data
Modern societies are ruled by what academics have identified as a data imperative (i), an unspoken mandate to every type of organization to extract, create, and use data for all its decisions and output creation. As a result, a massive amount of personal data is constantly being collected about us and our daily activities. This has created an intense and currently unresolved debate surrounding who owns this data.
Personal data typically refers to “any information relating to an identified or identifiable natural person”(ii). This includes indirect identification, like through a phone number or IP address. Its regulation has gained a significant focus among the international community after the enactment of the 2016 EU’s General Data Protection Regulation. The relevance of the European single market and its role in international commerce has driven many multinational companies to comply with the European standards. This has “generated a broader compliance pull with strong extraterritorial ramifications”(iii). Nonetheless, there remains an ongoing debate about the nature and ownership of personal data (iv).
There are two main assumptions underlying our current conceptualization of personal data: firstly, it is a commodityv (vi) , and secondly, it is owned by the companies manufacturing it (vii viii ix). This gives private and public organizations collecting our information the right to own it, use it and sell it.
Both the appropriation and commodification of personal data are major root causes of the weak legal and financial repercussions for data misuse and abuse. This has led to a situation where the harm posed to individuals is disproportionate to the consequences faced by organizations breaching data protection regulations. A good example is the lack of deterrence power of current fines and legal penalties. Hence, to establish a solid legal framework for personal data protection, the legal nature and ownership rights of personal data must be re-conceptualized.
The debate surrounding personal data ownership spans through a wide spectrum. From libertarians advocating for individuals’ ownership and monetization rights of their own information (x), to progressive voices arguing for declaring personal data as a public good, making it free, public, and managed for the collective benefit of society (xi). Therefore, the debate is often locked up in the dichotomy between individual rights and the broader societal welfare (xii). However, is there a possibility to reconcile these personal and public benefits?
One potential solution would be to draw personal data’s conceptualization and subsequent regulation from organoids: artificial organs developed through the labour and technology of labs and using as its primary source human bodily materials (xiii). Organoids have both subject-like and object-like components, making them a useful analogy for navigating the complexities of personal data.
This new framework would yield three valuable outputs. Firstly, personal data would be conveyed as a co-production between tech companies and individuals, entailing co-ownership. Secondly, the individual’s input would be identified as a bodily part, assuming that the information generated by people is a material embodiment of their identity. In other words, the transformation of their abstract being into tangible bits stored in servers. Thirdly, the gift paradigm approach of organ donation would underlie the data generation system, whereby individuals would altruistically donate their bodily parts. Although this will prevent the libertarians’ aspirations of exchanging personal data for profit, it will allow organizations to continue their data-base activity and innovation, generate economic development, and hence contribute the common good (xiv).
This new vision of personal data would mark a significant departure from current practices, emphasizing the confidentiality and social prominence of such information. As a result, extracting personal data will become a lengthy and expensive process. Consent, for instance, would no longer be permanent, and would be a case-to-case negotiation regarding the property rights, the scope and the purposes of usage and the duration of storage (xv). Much like organoids, different types of personal data exhibit varying degrees of intimacy, privacy requirements, responsibility allocation and ethical implications. For example, in the context of sperm and egg donation in assisted reproduction, legal rights and responsibilities pertaining to the child are previously determined in a consent agreement. For instance, a sperm donor may wish to disclaim any paternal responsibilities, whereas an egg donor may want maternal responsibility.
To smoothen the process, it could be useful establishing public-private partnerships in the form of databanks, such as biobanks in the case of organoids. These entities would be responsible for collecting and curating personal data, by specializing procedures such as consent negotiation, anonymization, and high-security storage.
Organizations seeking access to the data would submit requests to the databank, and if they need non—available data they could file an application for its collection by the entity. Donors would be provided with personal accounts where they could manage the information collected on them, the terms of consent and usage details. To ensure the security of the data, the databanks would operate independently from each other, having independent storage servers. They would also be independent from governmental authorities, meaning that public entities seeking access to the data would need to request it, protecting citizens from excessive state surveillance and control.
The new status of personal data would also imply tougher legal and financial repercussions for unauthorised or unethical use. In some cases, such misuse could even result in criminal consequences. While there are currently no specific repercussions for the misuse of organoids as it is a relatively new field, existing legislation and ethics standards relating to the potential misuse or dual use of biotechnologies could apply (xvi).
In light of the global attention being paid to data protection, it is imperative that regulators and policymakers capitalize on this momentum by establishing a robust regulatory framework and reliable infrastructure for managing this valuable resource. Democratic governments have a responsibility to safeguard the privacy and freedom of their citizens by protecting their personal data and fostering a trusted internet and digital ecosystem. One effective approach to achieving this goal is without doubt drawing upon key concepts from the regulation of organoids.
References:
i Sadowski, Jathan, “When data is capital: Datafication, accumulation, and extraction”, Big Data & Society, 6 (1), 2019. Available at: https://doi.org/10.1177/2053951718820549
ii European Union, “General Data Protection Regulation”, Official Journal of the European
Union”, vol. L 119, pp. 1, 2016. Available at: https://gdpr-info.eu/
iii Bradford, Anu, “The Brussels Effect: How the European Union Rules the World”, Columbia Law School Faculty Books, 2020. Available at: https://scholarship.law.columbia.edu/books/232
iv Prins, Corien, “When personal data, behavior and virtual identities become a commodity: would a property rights approach matter?”, SCRIPTed: A Journal of Law, Technology and Society, vol. 3, no. 4, 2006, pp. 270-303. Available at: https://script-ed.org/wp- content/uploads/2016/07/3-4-Prins.pdf
v Symons, Tom & Bass, Theo, “Me, my data and I: The future of the personal data economy”, Nesta, 2017. Available at: https://www.nesta.org.uk/report/me-my-data-and-i-the-future-of- the-personal-data-economy/
vi Sadowski, “When data is capital”, 2019
vii Sadowski, “When data is capital”, 2019
viii Thatcher, Jim; O’Sullivan, David & Mahmoudi, Dillon, “Data colonialism through accumulation by dispossession: New metaphors for daily data” Environment and Planning D: Society and Space, 34(6), 2016, pp. 990–1006. Available at: https://doi.org/10.1177/0263775816633195
ix Scassa, Teresa, “Data Ownership”, Center for International Governance Innovation, nº187, 2018. Available at: https://www.cigionline.org/publications/data-ownership/
x Lanier, Jaron, “Who Owns the Future?” Simon & Schuster, 2013
xi Symons & Bass Me, my data and I, 2017
xii Scassa, Teresa, “Who can Own Data in the Data Economy?” Center for International Governance Innovation, 2018. Available at: https://www.cigionline.org/articles/who-can-own- data-data-economy/
xiii Boers, Sarah N., Van Delden, Johannes J.M. & Bredenoord, Annelien “Organoids as hybrids: ethical implications for the exchange of human tissues,” Journal of Medical Ethics, 45(2), 2019
pp. 131–139. Available at: https://doi.org/10.1136/medethics-2018-104846
xiv Boers et al., “Organoids as hybrids”, 2019
xv Boers et al., “Organoids as hybrids”, 2019
xvi Mollaki, Vasiliki, “Ethical Challenges in Organoid Use”. BioTech, 10 (12), 2021 https://doi.org/10.3390/biotech10030012