Nissenbaum and Neurorights: The Jury is Still Out

This article refers to:

Brain Data in Context: Are New Rights the Way to Mental and Brain Privacy?

In their interesting paper, Susser and Cabrera (2024) apply the contextual integrity framework to brain data and mental privacy. This framework, developed by Nissenbaum (2009) and rooted in digital data and information ethics, has become an influential privacy theory. Based on this theory, Susser and Cabrera argue that while neurotechnologies raise privacy concerns because of the brain data they reveal, these are no different from the concerns raised by other data collection technologies, such as digital surveillance or genetic sequencing technologies. Therefore, they argue that “the privacy concerns neurotechnologies raise are urgent but not novel, justifying attention and action, but not new, unique rights” (131).

We agree that it is important to broaden the scope on privacy beyond the “privacy-as-control” theories that tend to be dominant in the debate on mental privacy. In addition, we agree that some of the privacy concerns raised by neurotechnologies are not unique, as they can also occur with other types of data such as genetic data. However, while we recognize the relevance of the contextual integrity framework for this debate, we believe that the authors too hastily conclude that, based on Nissenbaum’s account, no new rights to mental privacy—or “neurorights” (Ligthart et al. 2023)—are needed.

In fact, the relevance and potential of Nissenbaum’s contextual integrity approach comes to the fore precisely in the sense that it does not imply a strong position in terms of advocating or opposing new rights or legal provisions. Rather, the contextual integrity framework is a particularly useful tool to explore the fine-grained differences between various uses of data—including brain data—across different societal contexts and thus to explore the desirability of novel rights in particular contexts. As Nissenbaum makes clear, contextual integrity “can serve as a foundation for law and regulation by providing a standard against which legislation (existing or proposed) and detailed rules are tested” (Nissenbaum 2009, 236).

Accordingly, the contextual integrity framework can be helpful in complex privacy debates—including those pertaining to legal issues—precisely because it does not depart from one particular principle (such as control over information by individual consent) that is applied across all contexts. As Nissenbaum has argued, “there is no “one-size-fits-all” solution corresponding to broad classes of technology such as RFID [radio-frequency identification], video surveillance, and telephony (…)” (Nissenbaum 2009, 219). In the same way, there may be no one-size-fits-all solution to privacy challenges raised by neurotechnologies: maybe we will need novel rights to mental privacy in some societal contexts, but not in others. For example, the criminal justice context, discussed by Susser and Cabrera, could be a context where new rights are required to protect the rights of offenders (Meynen, et al. 2023)—the analysis will have to show this. Thus, the contextual integrity approach is not the end of the debate on the desirability of novel neurorights, but rather the start of a context-sensitive analysis of what would be (legally) required in each context of application. Based on such an analysis the legal framework may—or may not—need to be revised.

At this point, a useful comparison can be made between privacy concerns about brain data and those about genetic data. Similar to the debate on “neuroexceptionalism” (Bublitz 2022) and “neuroessentialism” (Reiner 2011) regarding neurotechnologies, there is a debate on “genetic exceptionalism” (Rothstein 2007) and “genetic essentialism” (Harden 2023) within genetics. Genetic exceptionalism holds that there is something distinct about genetic data that poses particular privacy concerns. Although many have been critical of genetic exceptionalism, legislation in the US, for example, is often genetic-specific when it comes to dealing with issues around genetic privacy, such as the Genetic Information Nondiscrimination Act (GINA) (Clayton et al. 2019). The contextual integrity framework is useful for the debate on genetic data as it explores the context-specific privacy-differences of such data, avoiding presuppositions about genetic exceptionalism. For example, in the specific context of law enforcement’s use of commercial DNA databases, a contextual integrity framework can elucidate issues regarding the interconnectedness of data and the dependence of law enforcement on commercial parties (de Groot 2023).

To illustrate, law enforcement is increasingly using commercial genetic databases like GEDmatch or FamilyTreeDNA to identify criminal suspects, such as the Golden State Killer (de Groot 2023). What is important here, is that if genetic data move from a commercial context to a law enforcement context, suddenly the data can be used for many purposes beyond the initial purpose, which has raised profound privacy concerns (De Groot 2023). In a similar vein, through the lens of contextual integrity, the privacy issues of applications of neurotechnologies across a variety of societal contexts can be clarified. Looking at brain data from a contextual integrity perspective may well reveal that certain explicit legal changes are needed regarding the flow of data within but also across various societal contexts.

If we use the contextual integrity framework to examine the desirability of novel neurorights, we also see that the question of whether brain data are different from other types of data in general may not be the most urgent question, as the type of data is only one of the parameters that constitute context-relative informational norms.

Still, even if we focus on brain data, it is useful not only to consider today’s technologies, but to look at possible future developments as well. Susser and Cabrera argue that present-day neurotechnologies do not give us direct access to thoughts or feelings. While this is an accurate description of the current state of affairs, in the context of discussions about new rights it is important to also consider what the (near) future might hold. Otherwise, legislation and regulation will always lag behind technological developments. With advancements in neurotechnology, it will probably become increasingly possible to link brain data to specific mental states, and these mental states arguably contain more sensitive information than many other types of data about human beings. While brain data at this point in time may thus not reveal such sensitive information, they might well do so in the near future.

Recognizing this evolving process of collecting brain data when implementing the contextual integrity approach may show that in certain contexts, more caution—and perhaps more legal protection—is warranted. And this is what the neurorights debate is largely about: technologies developing at such a rapid pace that we have to ethically and legally anticipate future developments in order not to lag behind (Ligthart et al. 2023). In other words, the fact that at this point in time neurotechnologies may not be able to “read minds” does not take away the deeper qualms motivating the neurorights debate. Therefore, considering the privacy implications of emerging neurotechnologies is important—and Nissenbaum’s framework is highly relevant here.

In conclusion, while we very much agree with the authors that there is a need for context-specific and multi-level approaches, we argue—contra the authors’ conclusion—that we should not prematurely dismiss new neurorights. At least, we should not do so based on Nissenbaum’s account, as refuting novel rights from the outset is precisely what the contextual integrity approach attempts to prevent: to apply (or, in this case, refute) one solution to a broad type of technology, such as neurotechnology. Instead, based on a differentiated and context-sensitive analysis of neurotechnologies, novel rights to mental privacy may still be on the table. In other words, when it comes to contextual integrity and the question of neurorights, the jury is still out.

DISCLOSURE STATEMENT

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the Nederlandse Organisatie voor Wetenschappelijk Onderzoek [PGW.19.014] and [VI.C.201.067].