The Benefits And Perils Of COVID-19 Neuropsychiatric Studies
- Source: The Neuroethics Blog
Why we need neuro-psychiatric monitoring and registries during the Global Pandemic
There is a growing awareness of COVID-19-associated CNS dysfunction likely caused by SARS-CoV-2 direct or indirect CNS invasion. This raises the possibility of a neuro-phenotype of COVID-19 with acute and delayed neuro-psychiatric effects. To this end, a few groups are advocating for prospective trials to monitor the evolution of neurologic symptoms associated with COVID-19 as well as the establishment of International COVID-19 Neurologic Registries.
There are multiple potential benefits to neuro-psych registries and clinical trials:
- Results from prospective studies could uncover predictive biomarkers and the etiologic factors that contribute to COVID-19 neuro-psychiatric symptoms. We can identify vulnerability and resilience factors, understand the mechanisms underlying neuropsychiatric symptoms, characterize temporal pattern and course of illness. These findings can inform strategies for earlier identification and more targeted interventions.
- There is a risk of long-term neuro-psychiatric symptoms as a consequence of SARS-Cov-2. The resulting neurocognitive impairments could affect a person's social functioning. Data collection could improve our understanding of the bi-directional influence of SARS-CoV-2 on human biology and social structures that shape it. Awareness of biologic and ecologic factors that perpetuate COVID-19 morbidity can inform more comprehensive prevention and mitigation strategies. These need to include pharmacologic and policy recommendations, e.g. treatments to minimize neuroinflammation and augment immunity, social services, and health system structure improvements to address disparities.
- Appreciation for the temporal evolution of symptoms informs public health recommendations and approach to public communication.
- Neuro-psychiatric data sets can fuel not only COVID-19 specific research agendas but could inform deeper understanding of pathology associated with psychiatric and neurologic illness such as PTSD and delirium, two conditions reported in association with other viral illnesses and SARS-CoV-2 itself.
- Studies that foster collaboration on a global scale could expedite dissemination of and open access to data sets can facilitate creation of future solutions.
- Data from these investigations could spawn development of novel neuro-technologies, pandemic surveillance tools, and new diagnostics and advance disease modelling capabilities.
- Global interdisciplinary research collaborations, such as study registries, could unite government leaders, scientists, public health officials, clinicians, and the general public to enhance social cohesion and generate more effective collective action.
Neuro-Psych symptom monitoring
If mobile phones are an extension of our minds, then they are also treasure troves of neuro-psych data. For example, Mindstrong, a digital phenotyping platform, capitalizes on our routine mobile phone usage to predict and monitor psychiatric symptoms. The human voice is another treasure trove of information about mental state and ripe for deployment in clinical trials e.g Neurolex. Consumer brain computer interfaces, such as Emotiv real time EEG monitoring, adds low friction data capture with little effort from the study participant. An intriguing smart ring from Oura complements existing smart watches that capture data while seamlessly integrating into the study participant's lifestyle. Additionally, an evolving market of pencil and paper skin sensors could be repurposed for passive symptom monitoring. Circling all this are the behemoth Apple and Google health ecosystems along with tele-med providers slowly penetrating more deeply into our healthcare research infrastructure.
An older but omniscient monitoring technology is the electronic health record (EHR) — a behemoth of patient data ripe for the picking... with one big problem: the present healthcare system is still mired in systemic, local, and regulatory issues which impede patient information sharing between different health care delivery systems that use different EHR vendors. The pandemic accelerates the need for technologic solutions that facilitate interoperability between these different healthcare systems and unifies health data with the intention of improving health outcomes and overall quality of healthcare. Information sharing between different electronic health record vendors would foster more efficient data access at a time when fast, accurate information is critical.
(Ethical) Risks — while neuro-phenotyping and tracking could be valuable, several ethical factors must be taken into consideration:
- Neuro-paternalism and bias
- Over-reduction of the human brain function and human experience
- Data ownership
- Power dynamic/further disenfranchisement
Neuro-paternalism and bias
A risk, however, of gathering neuro-psych data is that we generate a type of neuro-paternalism or the development of a new neuro-psychiatric underclass; those at risk (eg, of suicide, depression, or cognitive impairment) might face community stigma, insurability issues, uncertain employment, or underemployment and strained interpersonal relationships. We must plan for the potential disrupted sense of self, self-stigma, and loss of personal agency from awareness of a looming illness with foreshortened future, i.e. the "reflective impact" of diagnosis. This necessitates robust community support and contingency plans for any indicators of deteriorating neuro-psych parameters (e.g., elevations in suicide risk as well as psychotic or mood decompensation).
Reductionism of the human brain and human experience
As our brains are systematically deconstructed, quantified, monitored, as our thoughts, feelings, and motivations become more reduced to the activities of neural networks and taken as proxies for identity, it raises questions about our humanity: What we are becoming?
We can imagine a future where COVID-19 neuro-psych registries re-define norms for human cognition and behavior. However, who will vet the algorithm that determines the boundaries of "normalcy" and relative to what standard? Study creators must remain vigilant for racial or cultural bias inherent in their underlying assumptions and analyses.
Further, our cultural, economic and political milieu has a strong influence on our definitions of health or illness. We possess different thresholds for when the normal becomes "abnormal" and needs treatment. Treatment of neuro-psychiatric symptoms should also encompass non-pharmacologic interventions such as legislation for equity in access to treatments, social financial support programs, unlinking health insurance from jobs, possible provision of universal basic income, enhanced civic engagement, and policies to minimize pollution. These prospective COVID-19 neuro-psych studies will generate data that could alter our understanding of human cognition, brain functioning and the interaction of human biology and ecology.
How much control should we have over the data used for this transformation?
To what extent should clinical trial subjects be empowered with the right to self-determination regarding their neuro-psych data; should they be allowed to administer this digital identity in the spirit of being "self-sovereign?" Aside from the obvious privacy and security concerns which have been adequately addressed elsewhere, how do we prevent the exploitation of this neural footprint that when combined with our location, purchases, and social media profiles can create an even richer honey pot for digital identity. Study plans will need to define how subjects can lay claim to the identity created for them in these data sets. They need to clarify how accessible and transparent these data are, whether participants can exercise the "right to be forgotten," or port data elsewhere. There should be consent for additional uses and adherence to data minimization principles to ensure the protocols preserve individual freedoms and mitigate exploitation by design.
Neuro-psych registries might form yet another emerging power structure of the 4th industrial revolution; one that allows for knowledge to be extracted from living systems — in this case, our brains. We risk that this near sacred, very personal data falls prey to "cognitive capitalism" where bio-information from living systems becomes "capital" whose value is exploited by governments or private industry to further manipulate, surveille (surveillance capitalism), marginalize, and eliminate (thanato-politics). By creating a neuro-psych profile which exposes possible vulnerabilities, do we disavow "the vulnerable" of their power to change the very social structures that keep them stuck? This argues for developing paradigms that anticipate scenarios for how our bio-information interacts with existing and future socio-economic-political systems so we maximize the protection of human rights for all.
As I write this, social unrest in the US is elevating hope that positive change in existing economic and political power structures can give way to a more inclusive, harmonious world. SARS-CoV-2 illustrates how fragile these systems can be – it calls us to cultivate altruism and mobilize the productive power of the data we gather to help us all find the joy to live our best and healthy lives. While study data and tech progress could uncover a neuro-phenotype of COVID-19, these discoveries will mean very little if we don't re-imagine the very institutions and societal structures that perpetuate ecologic crisis, health inequity, poverty, racism and economic instability. The COVID-19 Pandemic reveals a reality we might be afraid to face: there is no return to "normal" since the previous normal was anything but.
This post is reprinted with permission and originally appeared on The Neuroethics Blog hosted by the Center for Ethics, Neuroethics Program at Emory University.