Session proposal: ethics and data protection in citizen science/open source projects

Workspaces LOTE6 “OpenVillage Festival”
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14

Hi @winnieponcelet,

as stated before I don’t see the two formats merging, as the principles of clinics, and total-peer-review, are quite conflicting, as it is the designed relationship of power in the two. In a CERN style event, we have to make sure a majority of the “parterre” has own projects, and stakes, that are touched by the conference topic, but there will not be 1-0-1 engagement, rather all will share their skepticism, and doubts, to converge (hopefully) to viable solutions, or to clearly mark as “BS” all that doesn’t stand peer-review…
Trying to have also a clinic in this context, would defeat the goal of maintaining everyone constantly on watch, peer-reviewing and critiquing/re-framing what is said… imagine a University lecture, at the end of which students wait for the talk to be finished, to approach the professor privately, rather than asking/commenting in public… we don’t want that.

“Speakers”, here, are sort of provokers, offering high quality insights into what’s going to be made, that has to be digested by the conversation of the “public”. Presentations should be short, and to the point, as appetisers for the question time. No project-specific answers will be sought (not by design, at least).

15

Hi @alberto

I hear you loud and clear, but you are not the committer of this session. I would like to collect the same kind of statement about expectations from (at least) all the projects that will come to create the OpenVillage (@noemi @winnieponcelet).

GDPR does not seem a hot topic in our conversations about ethics with the projects/communities we met so far (I tried to comment on this yesterday during the call, but @melancon mistook my opening for a reference to WP7 and I did not want to waste time in polemics)…
Furthermore, people in the legal field I regularly meet, have at the moment conflicting opinions about what to be expected from the new regulations that will soon take course… in facts, taken by the word the new regulations are clearly informed by a rather advanced view of IT, and they would seem to favour a migration to large platforms (please remember EU is working on an “open science cloud” of its own)… however, most legal professionals point out to the fact that the effect of any law will be shaped by the first (and later by the major) sentences by Courts… most envision some leniency in support of a realistic application of the law. An event centered on GDPR will happen, if the community wants it, but I feel it is a bit too early now for it to be anything more than a reading of the norms.

However, ethics in citizen science, something way larger than data handling, is a very appealing topic…

Does this make sense to you?

16

Oh, absolutely. I was just proposing an example of how anyone can declare interests, so that a specific format can be chosen.

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19

This discussion could easily constitute multiple session proposals rather than just one! I caught it last week but I’m coming to a response late from other things. I don’t know anything about GDPR or much about data protection in general but the discussion touches on a number of topics that interest me; policy re-designed as a tool for a networked and complex world and what Illich would refer to as the ‘radical monopoly’ that our procurement systems create.

But it’s another of Illich’s concepts that seems to be the thread running through this conversation - the systemic problems that arise from growing institutionalisation. As Marco mentions “bureaucracy tries to optimise for one model” and for me this is the nub. It is entirely unsuited to operating within systems thinking perspectives and perhaps this is what is called for beyond creating multiple models.

Systems account for and allow a greater degree of variation and adaption unlike as you say, bureaucracy that seeks to encourage standardisation because this is one of the conditions it needs to operate. This is also how I would understand why institutions can’t replicate bottom up approaches @markomanka - they are founded in two completely different operating systems to use Winnie’s term. It strikes me that the ethics training of Mandarins that @alberto mentions facilitated operation in a living system - and therefore able to cope with the infinite variations that played out across Imperial China. Ethics and data protection compliance are the symptoms in this context but to my mind, the underlying malaise is hyper-institutionalisation.

I also see another dilemma unfolding in the discussion that may be helpful to tease out. There would appear to be an inherent tension not just in this thread but also within Edgeryders itself between responding to immediate needs and contributing to generative creation of completely new approaches and responses. For example there is some necessity in meeting immediate needs of those undertaking Opencare work - to pull in resources to support their work or to understand the implications of future changes such as compliance. At the same time, there is a pull - to work on the ‘long shots’, the longer term, bigger impact projects that @winnieponcelet mentions.

A frame I’ve found useful is Three Horizons. Briefly: Horizon One (H1) is the dominant system, business as usual. Horizon Three (H3) for me represents a different paradigm - or a completely new way of doing things. Horizon Two (H2) is the space of innovation and this can go two ways: either prolong H1 (H2-) or open up H3 (H2+). It strikes me that Edgeryders and OpenCare are operating across all three horizons. Horizon One has been outlined in the proposition for OpenCare as rising health care costs and care systems struggling to meet demand. In exploring DIY welfare, OpenCare researches activity that falls into H2 stretching into H3. I’m not totally clear yet whether the underlying goal for OpenCare is H2-; that is enabling the current way of doing things simply to function better or H2+/H3 - paving the way for the ‘completely new’?

So in this discussion there are the immediate H1 needs of projects to sustain their work. What role does OpenCare (or might a session at OV) play in meeting these needs? But beyond this is there also a role to call for structural changes that get to the root of the problem? And this is where we hit up against mutually exclusive sets of interests. I’m curious as to how OC and EE sees itself in this regard?

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20

@gehan: the three Horizon model is interesting. Ethics and data protection in citizen science project, however, are not easily classified as H1, H2 or H3. No one seems to care. Data stewardship is normally dismal. Many projects (of any kind, not speaking about citizen science in particular) are playing cowboy. In all this, H1 requires compliance, this is true. But compliance is not where the action is. The action is in self-motivated actions to do things in fairness (in ethnics) and steward the datasets that people helped build together (in data protection).

So, you can take action because H1 demands it as a condition to fund your citizen science project (H1): in this case you will just tick boxes. You can do it to stay fundable, but while you are at it improve your practices a bit (H2-). You can do it mainly to improve your practices, and it’s great that you get extra fundability (H2+); or you can do it because you believe that a world that puts ethics and data stewardship in research is fundamentally different from one that consumes people and data and moves on (H3). In practice, in H2-, H2+ and H3 you will be doing the same things, at least initially, because conditions in H1 are so poor.

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Let’s make the call then and go with the CERN style review. We can brief participants so that it is generative, as it does seem like a more direct approach that can degrade into a fight instead of a search for insight.

I remember @breathinggames has questions on legislation. Same for @dfko from the Open Insulin side (also what can be generalized across the US and Europe). @olivier also has similar questions on certification and safety.

We’ll be on the lookout for experts to join the session. Do you have a sparring partner (or multiple?) in mind @markomanka ?

22

It’s all good… but are we the only ones engaging in this decision making? Do the people pinged so far all share the same opinions? They did not even reacted to the posts with a “like”…

Is it that, maybe, people would rather have an intrusion of legal/ethical discussions within the other sessions? We could still think of something interactive and pragmatic, if anyone shared their desires and/or frustrations about what we propose…

23

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? :slight_smile:

24

It could be @anu or @matthias reorganising content in the background. :smile:

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25

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:

  1. The very first post of this topic / thread contains a mention of your username.
  2. 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.
  3. When she does that, such as on this topic, it counts as an edit of the first post (you can click on “1 :pencil2:” in the top right of the first post to see the edit history, it says “tags changed: …”).
  4. 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.
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26

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?

27

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” :stuck_out_tongue: 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.

28

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? :yum:

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29

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 ?

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@winnieponcelet I see myself as an active participant; sitting in the audience and asking a lot of questions. Will that work for you?

31

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! :slight_smile:

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!

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32

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?)?

33

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?

34

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 :wink:

35

Hello
No, it is about making educational and care tools available to all.

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