Regulating Direct-to-Consumer EEG Neurodata - Why Lessons From Genetics Will Not Be Enough
Embargo until
2019-12-01
Date
2017-10-18
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Johns Hopkins University
Abstract
Historically, most neurodata – information about the structure and function of the brain – has been obtained in clinical and research settings. However, neurotechnologies are now being sold direct to consumer (DTC) and marketed to the general public for a variety of purposes. Commercially sold DTC electroencephalogram (EEG) devices are a rapidly expanding enterprise. Widespread personal neuroimaging will mean a plethora of neurodata being generated in the public sphere. This raises concerns related to privacy, confidentiality, discrimination, and individual identity. These observations may seem familiar – it may seem as though we have had this conversation before in the DTC genetic testing (DTC-GT) debate. As such it might look like the challenges of DTC-EEG devices could be solved easily within another framework, namely, that developed for the management and regulation of data from DTC-GT. However, there are distinctions between the two types of data that have important implications for their management and regulation. This paper will argue that in the era of big data, DTC commercially obtained EEG neurodata raises unique ethical, legal, social, and practical challenges beyond that of DTC genetic testing, and thus the frameworks developed for the management and protection of genetic data will be insufficient for the management and protection of neurodata. To this end, this paper outlines some of the most salient differences between neurodata and genetic information and highlights the associated challenges that arise relating to those differences. It concludes that special considerations for legislation arising from these challenges must be recognized by policymakers interested in regulating the production, use, and operationalization of neurodata in the public sector.
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Keywords
neuroethics, neurodata, EEG, neuroessentialism, genetic essentialism, DTC