Neural Data Privacy Rights

A worry that is not yet on the scientific or cultural agenda is neural data privacy rights. Not even biometric data privacy rights (beyond genomics) are in purview yet which is surprising given the personal data streams that are amassing from wearable computing, Internet-of-Things biosensors, and quantified self-tracking activities. Neural data privacy rights is the notion of considering the privacy and security issues regarding personalized data flows that arise from the brain.

There are several reasons why neural data privacy rights could become an important concern. First, personalized health data is already a contentious personal data issue, and anything regarding the mind, and mental performance and potential pathology has even more sensitivity and taboo attached to it.

Second, neural data privacy rights could be an issue because it is not difficult to measure some level of the electrical and other activity of the brain, and ever-ratcheting price-performance technology improvements could make it possible to capture and process the neural activity of vast numbers of people simultaneously in real-time. There are already many consumer-available devices that measure neural activity such as EEGs, PPGs, and tMS systems, augmented headsets like Google Glass, Oculus Rift, and foc.us, and other emotion and cognitive state analysis applications using eye-tracking, mental state identification, and affect analysis. 

Does Google Glass come with a Faraday cage?

Third, at some point, big data machine learning algorithms may be able to establish the validity and utility of neural data with correlation to a variety of human health and physical and mental performance states.

Fourth, despite the sensitivity of neural data streams, like any other form of personal data (where two data elements start to constitute an identification), privacy, security, and anonymity may be practically impossible. At worst, there could be malicious hacking, viruses, and spam targeting neural data streams.

Detailed Essay: "Neural Data Privacy Rights: An Invitation For Progress In The Guise Of An Approaching Worry"

Big Data: Reconfiguring and Empowering the Human-Data Relation

A strong new presence in contemporary life is big data (the collection and use of personal data by large institutions). As individuals, we can feel powerless in our relation with data.

At present, the human-data relation is one of fear, distance, powerlessness, lack of recourse, and diminished agency. There is an asymmetry of touch in the human-data relation where data can see and touch us without our noticing or being able to touch back. What is missing from the human-data relation is the capacity for humans to touch data in a meaningful way. The asymmetry of touch leads to an incomplete subjectivation of both the human and the data: big data creates a false composite in trying to model and understand the whole individual from just a few electronically-traceable activities, while humans have almost no sight or conceptualization of the entity that is big data.

There are at least two ways to humanize and improve the human-data relation. One is reconceptualizing subjectivation and personal identity as a malleable and dynamic association of elements and capacities, and the other is reconfiguring the power relation between humans and data. To balance the power relation so that humans are more empowered, non-profit institutions, watchdog organizations, and community groups could be created for the defense of personal data, and privacy could be overhauled as a practical impossibility and recast into a system of access rights and responsibilities conferred upon the data.

Presentation: The Philosophy of Big Data
Video (in French): La reconfiguration de la relation humaine-données par le toucher

The Post-Human Biocitizen

We find ourselves in a world with a frenetic pace of life sciences bio-innovation emanating from institutional science, startups, and community biolabs. New possibilities abound in a wide range of areas including  personal genomics, regenerative medicine, cellular therapies, anti-aging, microfluidic chips, quantified self tracking devices and apps, Google Glass, Google diabetes monitoring contacts, brain fitness training, wearable computing, IoT, and cognitive enhancement techniques.

At a higher level, two main themes emerging from this bio-innovation are:
1) what is happening with ourselves as human subjects
2) what is happening regarding data

The human subject is in the process of evolving into a biocitzen, being at the center of health optimization action-taking with a layer of quantified self-tracking gadgetry as a first line of defense, then a layer of preventive medicine health intermediaries (like genomic counselors) and peer collaborators in health social networks and community biolabs, and finally traditional public health services as final line of defense. 

Data's role is transforming even more quickly than the emerging biocitizen where the possibility of collecting, integrating, and sharing huge volumes of health data streams is now possible and required for the destigmatization of health issues and realization of preventive medicine. There are four main data streams to integrate: all of the omics (e.g.; genomics, metaboliomics, etc.), traditional health, quantified self-tracking gadgetry (wearables), and personal internet-of-things (e.g.; smart car, smart home). There is an important need to extend the concept of privacy and rethink the attendant rights and responsibilities of data regimes, quick likely with the advent of protective data intermediary services.

YouTube Video: The Post-Human Biocitizen

Presentation (en français): The Post-Human Biocitizen
Video (en français): Les personnes futures comme biocitoyens

Neural Data Privacy Rights

One result of the massive explosion in the wireless internet-of-things is that a wide range of new personalized data streams are being created.

Biometric data (e.g.; heart rate variability, respiration, galvanic skin response, temperature, daily steps taken, etc.) is sensitive enough but neurometric data is even more so. The immediate reaction would be fear of discovery and unwillingness to share neural data streams, real-time thought feeds (e.g.; Twitter, only more direct, even less filtered!), eye-tracking data, and EEG streams. But is this even realistic with the pace of advancing technology? Will a personal Faraday cage be bundled with Google's Project Glass?

As individuals and societies, we need to problematize issues related to the continuous streaming health information climate in ways that support and facilitate humanity's future directions in mature, comfortable, and empowering ways, with an eye to the future as opposed to the immediate knee-jerk privacy-at-all-costs reaction of the present.

Radical transparency

Social networking and Web 2.0 has made it easy to find out about the friends, resume, activities, and interests of the many people who permission-in and broadcast this information.

Financial privacy disappeared for groups of the population as benefits outweighed costs in peer-to-peer lending, real estate, expense management, and purchasing with Prosper, Zillow, Expensr, Mint, and now Blippy.

Health data is the new frontier as people are starting to publicly post their genome files, and perhaps blood test information with the SNPedia, Personal Genome Project, and DIYgenomics. Some people are tweeting their weight, and could possibly do so with their sleep-tracking Z scores and other quantified self tracking activities.

In the farther future, who will be the first to tweet their neural feed? The unexpurgated feed that would be captured directly from the brain, not medicated by language, typing, consciousness, and culture as now. As with other successful technology roll-out paradigms, truth culture is likely to be opt-in, and the competitive advantage could likely be with those who do decide to disclose.

This is a Transparent Society

As with any new technology, there is the useful application and the dark side. Google Street Views, real street-level photographs of places, is no exception.

The benefit of Google Street Views is being able to virtually experience a place without having to go there physically, such as a tour of Times Square. Most of the time, specific people are not yet identifiable, but sometimes they are in varying embarrassing or even possibly illegal situations.

Is it worth it? Too late!
Some debate whether the perceived privacy loss is worth it but it has already happened. Even the usually forward thinking Internet rights watchdog Electronic Frontier Foundation exemplifies the mistaken understanding of the current world, as staff attorney Kevin Bankston remarks that "Everyone expects a certain level of anonymity as they move about their daily lives."

In reality, we have already been a surveillance society for some time. If anything, Google Street Views brings a more explicit realization of this and as David Brin importantly points out, an open availability of the information.

Privacy was already lost in many ways but especially when the cost of audio and video recording equipment dropped, the reach and quality improved and devices became ubiquitous. The technology is small and can used in unnoticed ways. One has to assume that everything one does or says in public or semi-public environments is being recorded and will be increasingly played back. There are opportunities in this as lifecammer TV is showing and also risks but most importantly inevitability. What are creative ways to provide value in a transparent society?