Neuro Data Rights project

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Contact m@melanieswan.com

Outline

• Introduction and Aim
• Concept Definition and Topics
• Precedents
• Different Potential Approaches
• Practicalities and Technicalities
• Biggest Potential Fears
• Biggest Potential Benefits
• Project Structure
• Other

Introduction and Aim  

An increasing number of new personalized data streams are being generated through biosensors, wireless Internet-of-things devices, consumer EEGs, the burgeoning Quantified Self movement, health social network data, and social media data. The aim of the Neuro Data Rights project is to investigate and set the tone for how issues regarding these new data streams can be problematicized to support and facilitate humanity's future directions in a mature and empowering way.

Concept Definition and Topics

• Data streams: Personal neuro data streams (consumer EEG, fMRI, PPG), personal eye-tracking data, biometric data streams from objective metric sensor devices, social media data streams
• Changing definitions of personal and personal data
• Extended self and exosenses (through mobile phone, smartwatch, augmented reality glasses (e.g.; Google Glass project & expected knock-offs, wearable electronics, biosensors)
• Neuro data: quantified self, neuroethics, neurodiversity, neuroexpression, neurocommunications
• Data related issues: standards, formats, transmission, privacy, security, sharing, permissioning, ownership, storage, access, economics, business models

Precedents

• Primer of other personal data security/privacy models
• Genomic data, Medical data, Census data, Financial data
• Different responses of different countries or groups (including selective adoption, limited adoption, evaluation-based adoption)

Different Potential Approaches

• Rights/responsibilities model
• Access versus ownership model
• What are the Key Questions to Address? 
• How should I think about what my neuro privacy rights should be?

Practicalities and Technicalities

• Current State of Technology
• Example: fMRI data predicts visual imagery of viewer, Jack Gallant, UC Berkeley
• Example: Synthetic telepathy, UC Irvine
• Practical Impact
• Destigmatize pathologies (as has been the case with personal genomic data)
• Speed enhancement, normalization programs

Biggest Potential Fears

• Everyone will know what I am thinking
• Personal Faraday cages required given the potential rapid progress of electromagnetic spectrum detection and lack of social maturity regarding thought-sharing

Biggest Potential Benefits

• Improved communication  
  

Project Structure

• Phase I
•  Article exposing the relevant issues, collaboration: Greg McMullen, Melanie Swan 
  
• Phase II
• Book anthology, Greg McMullen, Melanie Swan, editors. Curated essay collection from topical thought-leaders. Potential contributors: Cory Doctorow, Charles Stross, Stu Card, Trent McConaghy,
• IEEE Standards Working Group
• Conference
• Meetup groups
• Policy fellowship