Public Labs and Consent
Public Labs might be considered as a DIY EPA. They do things like:
- Tracking oil spills
- Check against EPA, or sometimes in partnership with EPA.
- EPA has been asking the PL community group for their info -- the group they hired missed a bunch.
- Environmental Justice is people. Landfills go in places populated by PoC because they don't have the means to resist.
Not just about citizens helping scientists.
- We can
- ask questions,
- process, and
- draw conclusions!
"Communities which face dangers can best state what the needs are."
Mostly community activists and environmental folk. But not so much in the way software developers. Mostly Ruby, some Node.
Review of Framework for Consent policies
Formadahyde exposure -- can we track that? Body as a sensor, the remnants of chemicals exist in our bodies.
FEMA trailors, for instance, had some of these chemicals.
How to Measure
Epidemiology with people's symptoms who have lived in these places.
Public Lab has gotten involved. Can there be a place where people with tehse symptoms can share stories AND self-organize to respond to the national threat of formaldahyde exposure? There are also formaldahyde sensitive tube which can be hacked to pull air thru at a set rate for a sensor.
Traditional epidemoiology -- people submit their personal health data under IRB. Separately creating a platform or space to accept the risk of sharing that data (anonymously... OR not).
The study, and privacy concerns
you fill out a questionaire.
People have a different sense of privacy. Privacy from everyone in the world (defending from everyone else, including those researched) versus privacy just to research team.
The forum part is semi-public. Don't share so much that people can correlate their information. OR they accept the risks.
You can say you don't want your posts to be visible to the researchers.
Centralized approach saying "you have to be verified to have these issues" but how would you know? That's why we call it semi-public.
- want to use Public Labs sensors to deal with contrails.
- Is that level of inclusivity detrimental to the group as a whole?
- There's a level of targeting to worry about when reporting on environmental issues.
- Insurance companies might be tracking to be able to cut corners.
Counting how many reports there are from a certain region, rather than treating each as same weight.
Seen as patients, not as agents.
Registering data -- can either keep it yourself or upload it to the group.
How do you deal with self-selection bias? Epidimiology team is mostly dealing with that.
Opt In // Opt Out -- do people have other alternatives etc?
The community having to moderate itself to prevent folk exposing their identity if they don't want to is an interesting exercise in decentralized governance.
Other awesome groups
Propeller Health. Logs rescue inhaller use, to see where people were using them more often.
Group organizing in NYC about trying to plant gardens, difficulty because no one cared about it.
Link to Personal Genome Project's legal framework.
Open Mustard Seed project. Maintain certain personas within the app. Multiple accounts.
- Starting out with strict anonymity. Autocreated username which is jibberish.
- Existing community and evironmental connection.
- Changelogs/Diffs on existing datasets.
- Dual identity.
- Setting expectations -- is any aid coming from this?
- Accountability thru pointing out infractions to legal enforcement.