hebbianloop commented 3 years ago

Exploring a BIDS-DID Specification for Research Participant Data Self-Sovereignty

Project Description

The General Data Protection Regulation (GDPR) provides a high level of protection for health and genetic data (Article 9), the conditions for consent (Article 7), defines individual rights of data subjects (Articles 13-22), and describes mechanisms for data subjects to enforce their rights (Articles 77-84).

The collection and banking of large datasets must be justified by the societal benefit and balanced against respect for dignity, autonomy, privacy, and confidentiality of individuals. Researchers must show that data cannot lead to "re-identifiability" and must describe procedures to protect users and allow them to opt-out of research projects that violate a person's ethical beliefs (discrimination, profiling, unethical weapons, marginalization).

A decentralized identity (DID) can streamline scientific human subjects research by allowing users to grant/revoke access to data collected under their DID. The Brain Imaging Data Structure (BIDS) provides clarity for data interoperability between research studies. However, the current specification leaves use-rights and licenses in the hands of the researchers/institutions sharing the data.

This project is an extension of a previous hack-a-thon project to build open-source toolkits for decentralized science (De-Sci).

Specific goal

In this project, we will explore the feasibility of integrating existing DID frameworks with the BIDS specification to enable GDPR-compliant sharing of datasets. The milestones for this project are outlined below!

[ ] Summarize GDPR regulations relevant to collecting neuroimaging data from human subjects
[ ] Outline a revision to the BIDS specification to include DID tagging of participant data
[ ] Design a UI for uploading encrypted personal data to distributed cloud storage (IPFS)
[ ] Implement Data Permissions Access/Revocation with 3box profiles API
[ ] Demonstrate execution of a BIDS-app with confidential cloud computing on BIDS-DID dataset.

Skills required to participate

The only requirement is an interest to learn more about GDPR in the age of Web 3.0, DID, federated learning, and confidential cloud computing!

Coding skills

The latter goals will require at least a beginner level of the following:

language	level of expertise required
python	beginner
javascript	beginner
unix command line	beginner

software specific sills

no software specific skills required

GIT / GITHUB skills required

level	description
GIT - 0	no prior git knowledge
GIT - 1	can commit and push to a repository
GIT - 2	comfortable working with branches and can do a pull request on another repository
GIT - 3	can work with continuous integration

Integration

Our project is constructed to integrate with a variety of professional expertise or lay person interest!

A lawyer can summarize GDPR implications for neuroimaging and the pros/cons of DID.
An imager can describe data collection/storage challenges
An artist can create educational materials and graphics
A web programmer can build a front-end for interacting with data

Preparation material

IDX: Identity protocol for Open Applications IDX Specification 3box Profiles Documentation 3box Storage Documentation Infura for IPFS Data Storage BIDS Specification GDPR and the research exemption

Link to your GitHub repo

DeSci Github Repo

Communication

Join us on Discord

Sdniss commented 3 years ago

Dear @seldamat , thank you so much for suggesting a hackathon project! We were unsure whether we've already communicated with you that it would be wonderful to have hackathon project leaders propose their project with a 3-min pitch, guided by some slides, after the opening ceremony of the first day (24th of March)? We've scheduled time for project proposals between 10:00 and 10:30. We expect the response of our participants to the project to be maximised in this way. Thank you very much in advance! Please let us know in case anything would be unclear. See you tomorrow at the conference! :) Kind regards, the OpenMR organising committee

Remi-Gau commented 3 years ago

@seldamat

we created a channel for your project in the discord server we'll be using.

feel free to add in there an invite to your own server. :-)

hebbianloop commented 3 years ago

Thank you!! Ok so the pitches are 2am PST (my time) and turns out no-one else on the team will be available so how about I share a few slides or a recording?

I was planning on popping in on the unconference session and can elaborate on our project then! Should I submit a separate issue for the unconference?

thank you @Remi-Gau and @Sdniss !

Remi-Gau commented 3 years ago

recording would be best

slides will do too

And yes open an issue for the unconference. :-)

DorienHuijser commented 3 years ago

Hi @seldamat, how awesome that your are joining in from your timezone! ✈️🌎 When sending slides and/or a recording, can you please send them to our openmrbenelux [at] gmail [dot] com email address? Then I can share them with the attendees tomorrow "morning" 😄

Sdniss commented 3 years ago

With pleasure @seldamat , indeed so lovely having you at the conference, and checking in from a different timezone! :)

OpenMRBenelux / openmrb2021-hackathon