Researcher Perspectives on Data Sharing in Deep Brain Stimulation

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

doi:10.3389/fnhum.2020.578687

Cited by 12 publications

(11 citation statements)

References 51 publications

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“…22 Few investigators report sharing their research data with groups besides scientists, NIH, and/or review committees. A previous study raised concern about potential widespread data sharing with device manufacturers, 35 but our data show that this is uncommon. Most investigators thought that misuse would be unlikely, even if their research data would be public.…”

Section: Discussioncontrasting

confidence: 66%

“…3,4 Previously self-reported data sharing in subgroups of neuroscientists was more mixed. 35,39 However, willingness to share data is high in other domains, [40][41][42] which may represent mostly on-request sharing 41 and/or may overrepresent actual data sharing practices (e.g., socially desirable responses). 43 Requirements to share data 44 may also play a role.…”

Section: Discussionmentioning

confidence: 99%

“…Challenges with data usability have been highlighted previously. 3,4,35 The higher-level FAIR (Findable, Accessible, Interoperable, and Reusable) principles may help define some of the needed standards. 51 Policymakers may also consider the timing of data sharing, which may matter to investigators.…”

Section: Discussionmentioning

confidence: 99%

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Survey of Investigators About Sharing Human Research Data in the Neurosciences

2022

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Background:In the neurosciences, significant opportunities for sharing individual-level data are underexploited. Commentators suggest various barriers to data sharing, which may need to be addressed. Investigators’ perspectives on the main barriers are unclear. Furthermore, bioethicists have raised concerns about the potential misuse of neuroscience data, though discussions are hampered by uncertainty about the potential risks. It is unclear how common sensitive data are obtained and whether investigators judge them as sensitive.Methods:An online survey was disseminated among 1190 Principal Investigators (PIs) of active NINDS, NIMH, or NIH Brain Research through Advancing Innovative Neurotechnologies® (BRAIN) Initiative grants involving human subjects research.Results:397 investigators responded to the survey (response rate 33%). Most investigators (84%) support efforts to increase sharing of de-identified, individual-level data. However, investigators perceive many barriers to data sharing. The largest barriers were: costs and time; limited interpretation of the data without understanding the context of data collection; lack of incentives; limited standardization and norms for data acquisition, formatting, and description; and heterogeneity of data types.Several types of data described as sensitive in the literature are common among neuroscience studies, for example, neural correlates of behavior, emotions, or decision-making (71%) and/or predictive data (54%). Although most investigators consider it unlikely or extremely unlikely for their research data to be misused to harm individual research participants (82%), the majority were at least slightly concerned about potential harm to individuals if their research data were misused (65%). Investigators with more easily re-identifiable data, data from vulnerable groups, and neural data were more concerned about the likelihood of misuse and/or magnitude of harm of misuse of their research data.Discussion:We hope these data help prioritize the development of tools and strategies to overcome the main barriers to data sharing. Furthermore, these data provide input on what may be sensitive data for which additional safeguards should be considered.

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Section: Discussioncontrasting

confidence: 66%

Section: Discussionmentioning

confidence: 99%

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Survey of Investigators About Sharing Human Research Data in the Neurosciences

2022

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“…Based on Parens’s ( Parens, 1998 ) definition, we defined enhancement for our respondents as any technological or biomedical intervention used to improve someone’s cognitive, motor, or moral abilities beyond those of the average person, and beyond what is necessary to restore or sustain health. These questions were part of a larger interview guide developed to explore key ethical issues surrounding aDBS research, which we report elsewhere ( Muñoz et al, 2020 ; Zuk et al, 2020 ).…”

Section: Methodsmentioning

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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“…It will be particularly important for clinicians to participate in pediatric DBS data registries to expand the basis of evidence given that most pediatric DBS surgeries are performed outside of clinical trials in the US and other countries [38,39]. Knowledge gained from further research and data registries would allow for a more robust assessment of the risks and benefits of pediatric DBS for a given patient.…”

Section: Addressing Unknowns and Expanding The Basis Of Evidencementioning

confidence: 99%

Pressing ethical issues in considering pediatric deep brain stimulation for obsessive-compulsive disorder

et al. 2021

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Background: Refractory obsessive-compulsive disorder (OCD) among adults is the first psychiatric indication of deep brain stimulation (DBS) to receive an FDA Humanitarian Device Exemption (HDE). Given the HDE approval and encouraging evidence that has since emerged, exploration of DBS for OCD may expand to adolescents in the future. More than 100,000 adolescents in the U.S. suffer from refractory OCD, and there is already a precedent for the transition of DBS in adults to children in the case of dystonia. However, the risk-benefit analysis of pediatric DBS for OCD may be more complex and raise different ethical questions compared to pediatric DBS for dystonia.Objective: This study aimed to gain insight into pressing ethical issues related to using DBS in adolescents with OCD. Methods: Semi-structured interviews were conducted with clinicians (n ¼ 25) caring for pediatric patients with refractory OCD. Interview transcripts were coded with MAXQDA 2018 software and analyzed using thematic content analysis to identify emergent themes. Results: Five central themes were identified in clinician responses, three of which were exacerbated in the pediatric DBS setting. Clinicians expressed concerns related to conditions of decision-making including adolescents' capacity to assent (80%), the lack of evidence about the outcomes and potential unknown effects of using DBS in adolescents with OCD (68%), and the importance of exhausting other treatment options before considering DBS (20%). Conclusions: Strategies to address clinician concerns include implementation of validated decision support tools and further research into the outcomes of pediatric DBS for OCD to establish clear guidelines for patient selection.

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Researcher Perspectives on Data Sharing in Deep Brain Stimulation

Cited by 12 publications

References 51 publications

Survey of Investigators About Sharing Human Research Data in the Neurosciences

Survey of Investigators About Sharing Human Research Data in the Neurosciences

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

Pressing ethical issues in considering pediatric deep brain stimulation for obsessive-compulsive disorder

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