There has been some activity on this post by user @anu that has been notified to me, but I don’t spot where the reply/reaction is… can you give me a pointer? 
As Alberto says, it’s a side effect of reorganizing content on this platform. Sorry for the annoyance, I don’t see a useful way around it right now. Here’s what happened:
- The very first post of this topic / thread contains a mention of your username.
- We gave @anu the task to assign still-missing OpenCare content to the selection for ethnography using Open Ethnographer, which means assigning tag #ethno-opencare.
- When she does that, such as on this topic, it counts as an edit of the first post (you can click on “1
” in the top right of the first post to see the edit history, it says “tags changed: …”). - When a post is edited, Discourse re-evaluates the @mentions contained in it, and you get a notification about it. That behavior seems like a Discourse software bug to me, and I’ll report it to them eventually together with a list of other little issues we found.
1 Like
I’ve been talking to the Open Insulin team in Oakland and some big questions came up on how to proceed after we have the open source protocol. The idea of a sort patient coop came up. It would be helpful to discuss the ethics and legal side of this.
Given that @breathinggames also has questions, and then maybe attendees in the moment, but we don’t have them at this point in time: how do we harvest them? An idea: ask people during the festival, before your session.
Then do we need to choose one ‘representative’ that has an overview of all questions to participate with you in the format?
Hi @winnieponcelet
yes, probably the best way would be to have some mechanism to collect questions topics in advance.
I would have hoped this conversation to serve somehow this purpose… “even” 
I have to study sometimes, and knowing what the questions would look like ahead of time would help me to dive in into more detail…
The closer we get to last minute, the more the session will be a high level browse through. Real cases need interpretation, and sometimes lead to other related issues.
…anyway, I understand there is no way out of this… alphabetisation will be better than nothing, I guess.
This session would be very interesting for us @alberto @winnieponcelet!
Medical device accreditation
As you may know, we discussed with @costantino and @markomanka the reproduction of our device that transformes the breath into digital data. Some of our contributors advocated for a medical device accreditation, while others were against it, as it would have recentralized and closed the project.
Following this, we worked on a new research proposal to evaluate the reproduction of the device by different populations, in three fablabs (one around scholars, one around local residents, and one in a low resource setting). We also created a document for the ethical board, that aims to explain why the device does not go through this accreditation process.
Distributed data bases for health data
Regarding open data, we have been working on a distributed database to ensure that the data collected are kept within the community. We have thought about a use of two different cryptocurrencies, one to mobilize the community that contributes to the games (devcoin), another to grant rights to take part to decision-making to the users that generate data. We did not work on the ethics part though, and it would certainly be very valuable to discuss different ways of approaching it – possibly in a community-driven approach, where the community takes co-responsibility about the research? 
2 Likes
Have you though about the data aspect of your work, @rachel ? Do you have any related legal questions that can serve as input for this session?
I for one am interested to discuss genetic data in general. At this rate of technological progress, citizen access to genetic information will probably become widespread soon. Though if we do, we should put it into an OpenCare perspective. Something along the lines of this project: http://waag.org/nl/project/gene-coop (although it is still more of a performance at this point).
For the Open Insulin coop I have a hard time coming up with concrete questions now. We will go specifically into the idea during Anthony’s session the day before. Surely questions will pop up there. I am also wondering what is the difference between regions (eg. US and EU), since Open Insulin is now global.
@alberto , given that you were one of the instigators, do you want to be part of this session as sparring partner with @markomanka ?
@winnieponcelet I see myself as an active participant; sitting in the audience and asking a lot of questions. Will that work for you?
It looks like my email reply this morning didn’t work, so I will put it in here now that the site seems back up and ok!
more soon, I guess!!
this morning’s email
Hi!
every time I try to go to the edgeryders site there is an error!
just to quickly address a couple of points:
definitely shared scopes are the way to go, with at least partners working together, with the plan (because of human reporting bias) that they would be counting each other’s samples!
If there are only about 25 people, maybe a foldscope each is possible, even??
For the water sampling, technically we should plate for microbes within 5 h of the sampling (the first evening of the meeting? can’t even reach the schedule again now… Anyway, this would be fun and won’t be too involved, just plating and putting them in the incubator, to check for colonies the next day), so we could then get into quantitative aspects of such data during the workshop, along with the cheek cells etc.
In response a bit to your next note (will copy paste below, the bit) about data…
Definitely all of this is a legal issue in terms of privacy and health, and should be ‘anonymised’ I guess before posting anywhere.
The micronucleus data are not strictly speaking ‘genetic data’ - though I totally agree with the gene-coop principals, and worry about everyone getting their sequencing done by 23&me or other services - but rather are a measure of the number of cells thought to have broken off a big bit of chromosome. If someone has super high levels of cells with micronuclei, one should try to see if there are any potential exposures that could explain the finding, ideally. (not too easy!?)
I am not sure if we can really hope that citizen access to all genetic info is likely to be widespread, in the face of IP, however, any time soon.
This is a very big issue!
For instance all the mutations linked to BRCA1 that are patented by Myriad Genetics are not available readily, because they want to use them to diagnose breast cancers! However, this is a great disservice to people and for health, because actually, as a DNA repair factor, BRCA1/2 mutations greatly increase the risk of many cancers, not just breast cancer, and including prostate cancer in men.
By not distributing this information generally, it takes away from the broad realisation of how important prevention really is (if you avoid damage to your DNA, you have less need of repair - and repair can actually end up fixing new - potentially worse - mutations in certain cases - nhej… I could go on and on…) Study on how BRCAs are involved in repair is of course on-going, but again the human data are not readily accessible.
This is a sorry state of affairs!
I would love to have a data base of all the BRCA mutations to double check that they are all simply loss of function (or not?! dom neg??), but haven’t got this info yet, for instance.
Hope there are others interested in discussing such points during the meeting!
Looking forward!
1 Like
cryptocurrencies!?
interested in this
‘co-responsibility about the research’ (tho wonder how one would propose to take care in case of problems…)
are you trying to market a product (but open source?)?
Sure, that works.
Then I see two possibilities. The first is, in absence of a data expert to go head to head with @markomanka, @breathinggames could fill the spot with their project in mind. I’m not sure if this setup lends itself to the CERN review format you had in mind. Marco, does it work?
As another possibility, the ‘Distributed data bases for health data’ project mentioned by @breathinggames can be the starting point for a more general group discussion led by Marco. @alberto and I have questions, surely others will too when they hear about what the GDPR implies, or if they are prompted to think about ethics & data protection in their context.
I’m sure they both will be insightful, so I’m good with either. What do the others that are involved think?
Good afternoon @winnieponcelet
As mentioned yesterday on the phone, it would be a very interesting opportunity to have someone with real life doubts and issues stepping up to talk this out in public.
I would not think of this any longer of an adversarial debate, as I understand rather than having 2 parties playing the devil’s advocate for two alternative sides, here we would really have a joint exploration… but I prefer to keep things interesting for people, than to stick with schemes 
Hello
No, it is about making educational and care tools available to all.
1 Like