Big Brain Data: On the Responsible Use of Brain Data from Clinical and Consumer-Directed Neurotechnological Devices

Abstract

The focus of this paper are the ethical, legal and social challenges for ensuring the responsible use of Bbig brain data^-the recording, collection and analysis of individuals' brain data on a large scale with clinical and consumer-directed neurotechnological devices. First, I highlight the benefits of big data and machine learning analytics in neuroscience for basic and translational research. Then, I describe some of the technological, social and psychological barriers for securing brain data from unwarranted access. In this context, I then examine ways in which safeguards at the hardware and software level, as well as increasing Bdata literacy^in society, may enhance the security of neurotechnological devices and protect the privacy of personal brain data. Regarding ethical and legal ramifications of big brain data, I first discuss effects on the autonomy, the sense of agency and authenticity, as well as the self that may result from the interaction between users and intelligent, particularly closed-loop, neurotechnological devices. I then discuss the impact of the Bdatafication^in basic and clinical neuroscience research on the just distribution of resources and access to these transformative technologies. In the legal realm, I examine possible legal consequences that arises from the increasing abilities to decode brain states and their corresponding subjective phenomenological experiences on the hitherto inaccessible privacy of these information. Finally, I discuss the implications of big brain data for national and international regulatory policies and models of good data governance.

Artificial Intelligence in Basic and Clinical Neuroscience: Opportunities and Ethical Challenges

“…Figure 1 illustrates how many of the components mentioned above can be fully integrated to build an AI-based brain-computer interface that could provide a paralyzed individual with the means to operate a computer-based communication system. But neurotechnology is not confined to the assistive treatment of relatively rare neurological disorders, such as severe paralysis / locked-in syndrome, but has recently also entered the consumer-market with various devices for neurofeedback-based relaxation or well-being applications (Ienca et al, 2018;Kellmeyer, 2018).…”

“…The practical limits on the amount and specificity of information that can be extracted from brain signals at the individual level-now and in the near future-mean that scenarios involving "reading" the "mind" or "thoughts" will remain elusive for the time being. This will not deter scientists in public (or private-public) research institution nor researchers in technology companies (that have invested substantially in their own neuroscience and neurotechnology research in recent years (Kellmeyer, 2018;Strickland, 2017;Regalado, 2017;Clark, 2017), however, to use brain data as an interesting class of personal data in multimodal deep learning analysis frameworks. In this scenario, we do not yet know whether: a) the combination of many different classes of data (e. g. user behavior, geolocation data, data from devices, brain data etc.)…”

“…In the neuroethics community and other research fields, these concerns have precipitated a discussion around whether brain data should be treated as a special class of data that needs extra protection in data protection guidelines and regulations (such as genetic data e. g.) (Kellmeyer, 2018), perhaps even "neurorights" that refer to basic human rights (Ienca and Andorno, 2017), or whether in fact the question of what actually constitutes biomedical or health-related data becomes increasingly meaning-less as AI methods can make health-related inferences on many different types of data (and their combination and aggregation) that would have previously not been considered to be special health-related data (e. g. your movement patterns from your mobile phone, or your user behavior on the web).…”

Neuroethics at 15: The Current and Future Environment for Neuroethics

“…The military sector and the public research sector were notable drivers and funders of neurotechnological research and development (R&D) when neuroethics emerged as an academic field; the sector of commercial or direct-to-consumer neurotechnology has rapidly expanded and gained in importance in recent years (Ienca, Haselager, and Emanuel 2018;Kellmeyer 2018).…”

Direct-to-Consumer Neurotechnology: What Is It and What Is It for?

“…Different labels have been used in the attempt to define this heterogeneous and rapidly developing technological market. Among others: 'consumer' (Ienca, Haselager and Emanuel 2018), 'consumer-directed' (Kellmeyer 2018), and…”