Towards a Governance Framework for Brain Data

Voeneky, Silja; Ienca, Marcello; Fins, Joseph J.; Jox, Ralf J.; Jotterand, Fabrice; Andorno, Roberto; Ball, Tonio; Castelluccia, Claude; Chavarriaga, Ricardo; Chneiweiss, Hervé; Ferretti, Agata; Friedrich, Orsolya; Hurst, Samia; Merkel, Grischa; Molnár-Gábor, Fruzsina; Rickli, Jean-Marc; Scheibner, James; Vayena, Effy; Yuste, Rafael; Kellmeyer, Philipp

doi:10.1007/s12152-022-09498-8

Cited by 46 publications

(21 citation statements)

References 44 publications

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“…169 Protecting privacy in computational ecosystems is challenging, but several steps can be taken to ensure that the privacy of the patient is protected, for example, by (1) minimizing the data collection, (2) anonymizing the data by removing personally identifiable information from data before storing or processing, (3 using encryption methods to protect patient data while the data are being transmitted, stored, or processed, (4) implementation of access controls, (5) using security monitoring tools to detect potential breaches or unauthorized access to preclinical and clinical data, as wells as (6) obtaining clear and explicit consent from users before collecting, storing, or processing data to ensure that the users are aware of privacy aspects. [170][171][172][173] In addition, interdisciplinary research approaches allow the evaluation and optimization of process mining methods, aimed at the identification of discrete events, potentially enabling the modeling of dependencies in organ crosstalk. 174 Emerging data ecosystems like International Data Spaces 175 provide a holistic solution for the generation and sharing of data and knowledge, which are mandatory prerequisites for the advancement of analytical methods.…”

Section: Future Perspective Of Computational Ecosystems For Multiorga...mentioning

confidence: 99%

Section: Systems Biology Approach To Organ Crosstalkmentioning

confidence: 99%

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Use of Computation Ecosystems to Analyze the Kidney-Heart Crosstalk

Lohmöller

Kühl

et al. 2023

Circulation Research

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The identification of mediators for physiologic processes, correlation of molecular processes, or even pathophysiological processes within a single organ such as the kidney or heart has been extensively studied to answer specific research questions using organ-centered approaches in the past 50 years. However, it has become evident that these approaches do not adequately complement each other and display a distorted single-disease progression, lacking holistic multilevel/multidimensional correlations. Holistic approaches have become increasingly significant in understanding and uncovering high dimensional interactions and molecular overlaps between different organ systems in the pathophysiology of multimorbid and systemic diseases like cardiorenal syndrome because of pathological heart-kidney crosstalk. Holistic approaches to unraveling multimorbid diseases are based on the integration, merging, and correlation of extensive, heterogeneous, and multidimensional data from different data sources, both -omics and nonomics databases. These approaches aimed at generating viable and translatable disease models using mathematical, statistical, and computational tools, thereby creating first computational ecosystems. As part of these computational ecosystems, systems medicine solutions focus on the analysis of -omics data in single-organ diseases. However, the data–scientific requirements to address the complexity of multimodality and multimorbidity reach far beyond what is currently available and require multiphased and cross-sectional approaches. These approaches break down complexity into small and comprehensible challenges. Such holistic computational ecosystems encompass data, methods, processes, and interdisciplinary knowledge to manage the complexity of multiorgan crosstalk. Therefore, this review summarizes the current knowledge of kidney-heart crosstalk, along with methods and opportunities that arise from the novel application of computational ecosystems providing a holistic analysis on the example of kidney-heart crosstalk.

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Section: Future Perspective Of Computational Ecosystems For Multiorga...mentioning

confidence: 99%

Section: Systems Biology Approach To Organ Crosstalkmentioning

confidence: 99%

Use of Computation Ecosystems to Analyze the Kidney-Heart Crosstalk

Lohmöller

Kühl

et al. 2023

Circulation Research

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“…These include direct measurements of brain structure, activity and/or function (e.g., neuronal firing or bioelectric signals from EEG) and indirect functional indicators (i.e., blood flow in fMRI and fNIRS). These types of brain data can be combined with non-neural contextual data, such as voice recordings, smartphone usage data or neuropsychological assessments, that can be used to support inferences about mental processes in a broader sense" [11].…”

Section: Why We Must Defend Mental Privacy and Integritymentioning

confidence: 99%

Philosophical foundation of the right to mental integrity in the age of neurotechnologies

Lavazza

Giorgi

2023

Neuroethics

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Neurotechnologies broadly understood are tools that have the capability to read, record and modify our mental activity by acting on its brain correlates. The emergence of increasingly powerful and sophisticated techniques has given rise to the proposal to introduce new rights specifically directed to protect mental privacy, freedom of thought, and mental integrity. These rights, also proposed as basic human rights, are conceived in direct relation to tools that threaten mental privacy, freedom of thought, mental integrity, and personal identity. In this paper, our goal is to give a philosophical foundation to a specific right that we will call right to mental integrity. It encapsulates both the classical concepts of privacy and non-interference in our mind/brain. Such a philosophical foundation refers to certain features of the mind that hitherto could not be reached directly from the outside: intentionality, first-person perspective, personal autonomy in moral choices and in the construction of one's narrative, and relational identity. A variety of neurotechnologies or other tools, including artificial intelligence, alone or in combination can, by their very availability, threaten our mental integrity. Therefore, it is necessary to posit a specific right and provide it with a theoretical foundation and justification. It will be up to a subsequent treatment to define the moral and legal boundaries of such a right and its application.

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“…By now the spectrum of this debate has become much broader, with some scholars arguing that no new rights or legal reforms are needed to address brain-related informational privacy, and others arguing that while no new fundamental rights are necessary, there is still a need for context-specific and multi-level approaches (like the approach we defend here, cf. Ienca et al 2022;Fins 2022). This has motivated scholarship on the complex legal landscape that needs to be considered in brain data governance (cf.…”

Section: Do We Need Mental and Brain Privacy Rights?mentioning

confidence: 99%

“…This has motivated scholarship on the complex legal landscape that needs to be considered in brain data governance (cf. Ienca et al 2022). While we acknowledge the existence of these more nuanced approaches, we focus in this paper on the position, often overhyped and overrepresented in certain advocacy efforts and international debates on the issue 7 , that novel fundamental rights (such as a right to mental privacy) are needed.…”

Section: Do We Need Mental and Brain Privacy Rights?mentioning

confidence: 99%

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

Susser

Cabrera

2023

AJOB Neuroscience

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The potential to collect brain data more directly, with higher resolution, and in greater amounts has heightened worries about mental and brain privacy. In order to manage the risks to individuals posed by these privacy challenges, some have suggested codifying new privacy rights, including a right to "mental privacy." In this paper, we consider these arguments and conclude that while neurotechnologies do raise significant privacy concerns, such concerns are-at least for now-no different from those raised by other well-understood data collection technologies, such as gene sequencing tools and online surveillance. To better understand the privacy stakes of brain data, we suggest the use of a conceptual framework from information ethics, Helen Nissenbaum's "contextual integrity" theory. To illustrate the importance of context, we examine neurotechnologies and the information flows they produce in three familiar contexts-healthcare and medical research, criminal justice, and consumer marketing. We argue that by emphasizing what is distinct about brain privacy issues, rather than what they share with other data privacy concerns, risks weakening broader efforts to enact more robust privacy law and policy.

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Towards a Governance Framework for Brain Data

Cited by 46 publications

References 44 publications

Use of Computation Ecosystems to Analyze the Kidney-Heart Crosstalk

Use of Computation Ecosystems to Analyze the Kidney-Heart Crosstalk

Philosophical foundation of the right to mental integrity in the age of neurotechnologies

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

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