Researcher Perspectives on Ethical Considerations in Adaptive Deep Brain Stimulation Trials

Muñoz, Katrina A.; Kostick, Kristin M.; Sanchez, Clarissa E.; Kalwani, Lavina; Torgerson, Laura; Hsu, Rebecca L.; Sierra‐Mercado, Demetrio; Robinson, Jill O.; Outram, Simon; Koenig, Barbara A.; Pereira, Stacey; McGuire, Amy L.; Zuk, Peter; Lázaro‐Muñoz, Gabriel

doi:10.3389/fnhum.2020.578695

Cited by 29 publications

(23 citation statements)

References 41 publications

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“…We developed the interview guide based on a review of key issues and concerns identified in the bioethics and neuroethics literature on data sharing, during participant observation in a lab conducting aDBS research, and in discussions with other experts. While the interview guide included additional questions related to other important neuroethics issues (including what researchers view as the most pressing ethical issues in aDBS research, what issues they have personally encountered in their research, and questions about specific features of aDBS), we report researchers' views on those topics elsewhere (Muñoz et al, 2020) and report here specifically on results about researchers' attitudes and perspectives towards data sharing. We have used identification numbers in this piece that are different than those in Muñoz et al (2020) to help ensure de-identification of researcher-participants.…”

Section: Methodsmentioning

confidence: 99%

Researcher Perspectives on Data Sharing in Deep Brain Stimulation

Zuk

Sanchez

Kostick

et al. 2020

Front. Hum. Neurosci.

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The expansion of research on deep brain stimulation (DBS) and adaptive DBS (aDBS) raises important neuroethics and policy questions related to data sharing. However, there has been little empirical research on the perspectives of experts developing these technologies. We conducted semi-structured, open-ended interviews with aDBS researchers regarding their data sharing practices and their perspectives on ethical and policy issues related to sharing. Researchers expressed support for and a commitment to sharing, with most saying that they were either sharing their data or would share in the future and that doing so was important for advancing the field. However, those who are sharing reported a variety of sharing partners, suggesting heterogeneity in sharing practices and lack of the broad sharing that would reflect principles of open science. Researchers described several concerns and barriers related to sharing, including privacy and confidentiality, the usability of shared data by others, ownership and control of data (including potential commercialization), and limited resources for sharing. They also suggested potential solutions to these challenges, including additional safeguards to address privacy issues, standardization and transparency in analysis to address issues of data usability, professional norms and heightened cooperation to address issues of ownership and control, and streamlining of data transmission to address resource limitations. Researchers also offered a range of views on the sensitivity of neural activity data (NAD) and data related to mental health in the context of sharing. These findings are an important input to deliberations by researchers, policymakers, neuroethicists, and other stakeholders as they navigate ethics and policy questions related to aDBS research.

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Section: Methodsmentioning

confidence: 99%

Researcher Perspectives on Data Sharing in Deep Brain Stimulation

Zuk

Sanchez

Kostick

et al. 2020

Front. Hum. Neurosci.

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“…are likewise being explored for use as enhancements ( Kreitmair, 2019 ; Wexler and Reiner, 2019 ), we focus here specifically on aDBS, which differs from most other neurotechnologies by virtue of being an invasive, surgically implanted technology with an established capacity to both read and write to the brain, meaning the device can monitor as well as independently and automatically stimulate brain activity. This closed-loop technology, once further developed, would bypass the need for active monitoring or intervention by a human agent and raise ethical questions related to data privacy and security, patient informed consent and understanding ( Muñoz et al, 2020 ), and the need to preserve personal autonomy ( Zuk and Lázaro-Muñoz, 2019a ), agency, and identity ( Lázaro-Muñoz et al, 2017 ). When used in the context of experimental clinical settings, aDBS devices raise additional concerns about post-trial continued access ( Muñoz et al, 2020 ) to and/or removal of devices ( Sierra-Mercado et al, 2019 ) for participants in research trials after the study period is over.…”

Section: Introductionmentioning

confidence: 99%

“…This closed-loop technology, once further developed, would bypass the need for active monitoring or intervention by a human agent and raise ethical questions related to data privacy and security, patient informed consent and understanding ( Muñoz et al, 2020 ), and the need to preserve personal autonomy ( Zuk and Lázaro-Muñoz, 2019a ), agency, and identity ( Lázaro-Muñoz et al, 2017 ). When used in the context of experimental clinical settings, aDBS devices raise additional concerns about post-trial continued access ( Muñoz et al, 2020 ) to and/or removal of devices ( Sierra-Mercado et al, 2019 ) for participants in research trials after the study period is over. The intentional expansion of aDBS technology into the commercial sphere for non-clinical and elective ( Neuralink Inc, 2022 ) uses evokes further concerns, both practical (related to function and efficacy) and ethical (related to moral rightness or wrongness), revolving around safety (that it could potentially harm consumers) ( Jarchum, 2019 ), data security/privacy (brain activity could be accessed by unwanted third parties, “hacked” or otherwise exploited or exchanged as “currency” via licensing agreements) ( Dresler et al, 2018 ), and free will (that neuroenhancement may threaten our understanding of human agency, responsibility and liability) ( Nahmias et al, 2014 ; Klein et al, 2016 ).…”

Section: Introductionmentioning

confidence: 99%

Researchers’ Ethical Concerns About Using Adaptive Deep Brain Stimulation for Enhancement

Kostick

Kalwani

Koenig

et al. 2022

Front. Hum. Neurosci.

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The capacity of next-generation closed-loop or adaptive deep brain stimulation devices (aDBS) to read (measure neural activity) and write (stimulate brain regions or circuits) shows great potential to effectively manage movement, seizure, and psychiatric disorders, and also raises the possibility of using aDBS to electively (non-therapeutically) modulate mood, cognition, and prosociality. What separates aDBS from most neurotechnologies (e.g. transcranial stimulation) currently used for enhancement is that aDBS remains an invasive, surgically-implanted technology with a risk-benefit ratio significantly different when applied to diseased versus non-diseased individuals. Despite a large discourse about the ethics of enhancement, no empirical studies yet examine perspectives on enhancement from within the aDBS research community. We interviewed 23 aDBS researchers about their attitudes toward expanding aDBS use for enhancement. A thematic content analysis revealed that researchers share ethical concerns related to (1) safety and security; (2) enhancement as unnecessary, unnatural or aberrant; and (3) fairness, equality, and distributive justice. Most (70%) researchers felt that enhancement applications for DBS will eventually be technically feasible and that attempts to develop such applications for DBS are already happening (particularly for military purposes). However, researchers unanimously (100%) felt that DBS ideally should not be considered for enhancement until researchers better understand brain target localization and functioning. While many researchers acknowledged controversies highlighted by scholars and ethicists, such as potential impacts on personhood, authenticity, autonomy and privacy, their ethical concerns reflect considerations of both gravity and perceived near-term likelihood.

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“…Although caregiver relationships are often characterized by support, in some instances they may introduce tension and disagreement in a patients' experience and interpretation of DBS effects (Klein et al 2016). As emotional experiences can be deeply situated within social contexts, it will be essential to understand the role of close others when aiming to support patients' development of self-trust, as well as the impact of DBS on agency more broadly (Muñoz et al 2020;Brown 2020;Klein et al 2016;Goering et al 2017;Mackenzie 2014).…”

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confidence: 99%

“…Advances in technology and neuroscientific knowledge hope to bring a clearer distinction between instances where stimulation should be autonomously adapted independently of patient input versus stimulation in which they should be kept "in the loop" in order to assess and potentially alter its effects (Muñoz et al 2020;Klein et al 2016;Goering 2015). Maybe Cora would prefer to be able to "self-modulate" her DBS in order to best attune the effects of stimulation to the demands of her everyday life, in this case preferring to have the capacity to engage in a particular kind of emotional expression at a funeral.…”

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confidence: 99%

The Development of Self-Trust in DBS Patients

Walton

2021

AJOB Neuroscience

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Schönau et al. (2021) provides essential concepts and methodological tools for examining the complex interactions that emerge between neurotechnology and an individual's agency. The authors describe the agency dimension of trust as an individual's trust in themselves to make use of feedback provided by neurological interventions in order to effectively evaluate their own experience and choose how to act within their environments. Their discussion is restricted to issues of sensory feedback for those using brain computer interfaces (BCIs). However, this also presents an opportunity to consider the emotional effects that can result from deep brain stimulation (DBS) as a type of feedback for which individuals must develop self-trust regarding their ability to reflect and act upon these experiences. Building upon the authors' work, I discuss the relational aspects of self-trust for DBS patients, focusing on the adjustment of stimulation parameters and the future potential of autonomous neurostimulation.Consider their case study of Cora, an individual using DBS for major depressive disorder. For Cora, the relevant feedback is her feelings (or lack thereof) in response to her friend's funeral, where she is left wondering whether her emotional reaction is attributable to her DBS or to aspects of her relationship with her friend. In the same way that BCI users must learn to trust their understanding and use of sensory feedback, DBS users must learn to trust themselves in the reflection and interpretation of their emotional responses. The process of interpreting and negotiating changes to emotional experiences is of particular importance to DBS, as there is often a need and opportunity to adjust and "fine-tune" the stimulation parameters to fit the needs of individual patients. Thus, patients must identify what experiences represent desired control of their symptoms versus undesired side effects. Due to the wide range of variability with regards to disease experience, effects of DBS, and how these effects impact the abilities meaningful to individual patients, it is essential for patients to contribute actively to the process of identifying the stimulation effects that best work for them-and to trust themselves in doing so.Developing and practicing this trust occurs in the context of interactions with caregivers and close others (Brown 2020). While Schӧnau et al.'s case study describes Cora as alone in reflecting and interpreting the meaning of her emotional experience, there are often friends or family members that play an essential role in how we understand and interpret our emotional reactions, and thus support our ability to trust ourselves in acting upon these

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Researcher Perspectives on Ethical Considerations in Adaptive Deep Brain Stimulation Trials

Cited by 29 publications

References 41 publications

Researcher Perspectives on Data Sharing in Deep Brain Stimulation

Researcher Perspectives on Data Sharing in Deep Brain Stimulation

Researchers’ Ethical Concerns About Using Adaptive Deep Brain Stimulation for Enhancement

The Development of Self-Trust in DBS Patients

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