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The Benefits and Perils of COVID-19 Neuropsychiatric Studies

By Lydia Fazzio 

I. Why we need neuro-psychiatric monitoring and registries during the
Global Pandemic 


Image courtesy of Pixabay

There is a growing awareness of COVID-19-associated CNS dysfunction3 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.5 To this end, a few groups are advocating for prospective trials to monitor the evolution of neurologic symptoms associated with COVID-191 as well as the establishment of International COVID-19 Neurologic Registries.


There are multiple potential benefits to neuro-psych registries and clinical trials: 
  1. 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. 

  2. 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.

  3. Appreciation for the temporal evolution of symptoms informs public health recommendations and approach to public communication.

  4. 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.

  5. Studies that foster collaboration on a global scale could expedite dissemination of and open access to data sets can facilitate creation of
    future solutions.

  6. Data from these investigations could spawn development of novel neuro-technologies, pandemic surveillance tools, and new diagnostics and
    advance disease modelling capabilities.

  7. 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.

II. Neuro-Psych symptom monitoring 1,2,6

If mobile phones are an extension of our minds,7 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. 


III. (Ethical) Risks — while neuro-phenotyping and tracking could be valuable,
several ethical factors must be taken into consideration: 
  1. Neuro-paternalism and bias 

  2. Over-reduction of the human brain function and human experience 

  3. Data ownership 

  4. 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.9 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 

Image courtesy of Pixabay

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. 

Data ownership

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?”10 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.

Power dynamics 


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. 


Concluding statements 

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. 


References 
  1. Needham, E. J., Chou, S. H. Y., Coles, A. J., & Menon, D. K. (2020).
    Neurological implications of COVID-19 infections. Neurocritical care,
    1. 
  2. Frontera, J., Mainali, S., Fink, E. L., Robertson, C. L., Schober, M.,
    Ziai, W., … & McNett, M. (2020). Global Consortium Study of
    Neurological Dysfunction in COVID-19 (GCS-NeuroCOVID): Study Design and
    Rationale. Neurocritical Care, 1. 
  3. Mao, L., Jin, H., Wang, M., Hu, Y., Chen, S., He, Q., … &
    Miao, X. (2020). Neurologic manifestations of hospitalized patients with
    coronavirus disease 2019 in Wuhan, China. JAMA neurology, 77(6),
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  4. Román, G. C., Reis, J., Spencer, P. S., Buguet, A., Öztürk, S., Wasay, M.,
    … & Meshram, C. (2020). COVID-19 international neurological
    registries. The Lancet Neurology, 19(6), 484-485. 
  5. Troyer, E. A., Kohn, J. N., & Hong, S. (2020). Are we facing a
    crashing wave of neuropsychiatric sequelae of COVID-19? Neuropsychiatric
    symptoms and potential immunologic mechanisms. Brain, behavior, and
    immunity
  6. Holmes, E. A., O’Connor, R. C., Perry, V. H., Tracey, I., Wessely, S.,
    Arseneault, L., … & Ford, T. (2020). Multidisciplinary research
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  7. Is your phone part of your mind? | David Chalmers | TEDxSydney
    . (2011,
    June 12). [Video file]. Retrieved from
    https://www.youtube.com/watch?v=ksasPjrYFTg 
  8. Gropper, A, Chen, M, Fazzio, L. (2018). WebOfTrustInfo/rwot7-toronto.
    Retrieved from
    https://github.com/WebOfTrustInfo/rwot7-toronto/blob/master/topics-and-advance-readings/standards-for-governance.md 
  9. Tekin, Ş. (2014). Self-insight in the
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  10. Allen, C. (2016, April 26). The Path to Self-Sovereign Identity. Retrieved
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  11. Wolford, B. (2020, April 24). Everything you need to know about the “Right
    to be forgotten.” Retrieved from
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  12. Braidotti, R. (2019). A theoretical framework for the critical
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  13. Zuboff, S. (2020). The Age of Surveillance Capitalism: The Fight for a
    Human Future at the New Frontier of Power
    (Illustrated ed.). New York, NY:
    PublicAffairs. 
  14. 14. Braidotti, R. (2015). Posthuman affirmative politics.
    In Resisting Biopolitics (pp. 42-68). Routledge.
_________________


Lydia Fazzio, MD is Assistant Professor in the Dept of Psychiatry at
Emory University. She holds a BSc in Neuroscience from Brown University and trained at Cambridge Hospital in Cambridge MA.
Prior to Emory, Lydia was a research physician at Eli Lilly and Johnson &
Johnson and later pivoted to medial strategy positions at various healthcare
communications agencies in New York City. She seeks to integrate
eco-psychiatry and philosophy to inform a more comprehensive understanding of
mental illness. She maintai
ns mind-body integrity by spending as much time as possible in nature.


Want to cite this post?



Fazzio, L. (2020). The Benefits and Perils of COVID-19
Neuropsychiatric Studies. The Neuroethics Blog. Retrieved on

, from
http://www.theneuroethicsblog.com/2020/09/the-benefits-and-perils-of-covid-19.html. 

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