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"

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

Consumer genomic testing update

In the wake of expected industry-wide regulation of consumer genomic testing, two of the big four testing companies, Navigenics and Pathway Genomics, have pulled their direct-to-consumer offerings in the last few months. Now a doctor must order their tests.

23andMe and deCODEme still have consumer genomic tests available, covering 174 conditions for $429 and 49 conditions for $2,000, respectively (Figure 1). Sooner rather than later could be a good time to sign up for a genomic service, possibly using year-end HSA dollars.

Figure 1. Landscape of direct-to-consumer genomic testing services.

Source: DNA Testing: Living Longer Via Personal Genomics

The potential industry-wide regulation is in regard to two issues, one is whether a physician must order the tests, and two, whether companies should be able to publish their interpretations of the results.

The DIYgenomics website lists two online petitions in support of rights to one's own genetic data:

• Petition for Access to Genetic Information

• Petition for Health Data Rights