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Alberto's picture

Calling mostly @WinniePoncelet .

I propose that the mighty @markomanka leads a session on ethics and data protection  in citizen science/open source projects. Regulation on ethics in research and data protection is taking shape, with the GDPR coming into force in less than a year in the EU. Marco thinks there is potential for this new regulation to make anyone except very large and well-moneyed orgs viable to do research and data protection. This would be done by making the costs of compliance very high.

Example: if you use algorithms (say, a recommendation algorithm for books) you are supposed to be able to make a case that it is ethical: you are not, for example, systematically recommending books by white authors over minority ones, or male authors over female ones, whatever Bayesian updating might have to say. Which is fine, but where does this leave open source? What happens if I install WordPress on my server, and WordPress comes with a search algorithm? Do I have to audit the code to be compliant with the GDPR? 

The outcome of the session could be an ethics/data protection wiki for citizen science projects in care: guidelines that tell projects like OpenInsulin what to do when. 

What do you think?




WinniePoncelet's picture

This is a tough subject for citizen science projects to look into themselves. It is relevant for those who are already further in the project, like echOpen or Open Insulin, or those starting out, to keep it in mind. When doing something radically open, the last thing you want is to compromise the project by making avoidable missteps, legally or ethically. 

I like the idea of a wiki. How would such a session look like? Is it a documentation effort of what can be found on the web, or experts sharing insights and projects judging the relevance, or something else?

If needed, are there other experts to invite @markomanka ?


Let Marco explain this

Alberto's picture

@markomanka , what do you think? 

I would certainly welcome an intro to GDPR with an open source perspective. 


Very relevant

markomanka's picture

Hi @Alberto

as discussed on hangout I find ethics, in general, to be a very powerful learning point for most, if not all, the open care projects we have met. Well beyond the challenges of GDPR, there is in general a certain semantic confusion about what "open" would mean, and a lack of self-reflections about where value is produced, and for whom... Defending ethics in the absence of such fundamental insights is often challenging, and most conversations get framed as box-ticking before adequate discussion and provocation.

That being said, I would like to ask @WinniePoncelet (we can discuss the details tomorrow during our call) to evoke an expression of interest with real questions/stories by the groups that would join this session at the Village.
In facts, we have to be realistic about the time limitations at the Village, and what we can usefully discuss there and then...

On a related issue, I would like to collect questions for the ethics board, from the consortium partners (@Lakomaa , @Rossana Torri , @Alberto , @melancon , @Costantino ), and from the guests ( @WinniePoncelet ), to hold a private, and a public question times with our advisors... most likely via hangout/skype, during the Village.
Collecting questions/topics is fairly important, as of course the advisors need time to understand the proposed issue, and prepare a conversation. (Let's give a deadline of at least one month ahead of the Village?)

Talk soon,


Ethics of public spending

Matteo's picture

In CoM's experience, ethics and data protection in public / open source science projects (@Alberto) belong to public spending decisions. Since one of the major leverage that public administrations can use to include private partners in public policies is to finance them with taxpayers' money (to keep it simple, I will not mention PPPs, which also have pitfalls), they need to make rational, fair and transparent decisions. This is where public procurement rules apply. However, strict rules often lead to standard, controlled and predictable output. When it comes to innovative_community-based_care related policies, effective solutions can come from spontaneous practices that we have to approach in a different way (what if they do not know there are public funds?), we have to support in a different way (what if they can not write projects proposals efficiently?) and we have to relate to in a different way (what if we don't understand their languages). In other words, we might be fairly-ineffective or efficiently-unfair. I hope this isn't too much off topic @markomanka.


That's the kind of provocations I am looking for

markomanka's picture

Hi @Matteo

thank you for your reaction.

That's absolutely not off topic, and quite in line with what we have been observing/hearing during OpenCare. Another side of this, correct me if I am wrong, seems to be the fact that most of the times once public institutions get wind of the interesting bottom up activities around them, they often try to replicate/absorb them at face value... investing in a snapshot of what seems to be their current value proposition, but failing to capture the path that attracted momentum, and their value chain.

In facts, many initiatives have little EXPLICIT awareness of their values and situation, and it is perfectly fine for them, as they run on experience and shared stakes... but transfer/reproduction efforts complicate things quite a bit...

...on the issue you point out... Could one challenge be the denial of the need of more than just one model to describe reality?
In care this is quite problematic... bureaucracy tries to optimize for one model, typically fine tuned around middle tendencies of distributions in public health, but this operation introduces important fragilities, as eloquently discussed by Nassim Taleb...

Looking forward to your further considerations ;)


Like this

Alberto's picture

It latches nicely onto work we are doing on a different project, witn UNDP: @Hasmik , @gazbia-sorour , @Tinatin , @Inge , @Max Perry , @LilitMidoyan ... 

The topic is different from care: we are looking at bottom-up urbanism, city-as-a-wiki etc. But it is still community-based, and seeks to empower community capability and enable it towards public good goals. This is very hard for local governments to do, because giving communities space requires, paradoxically, for them to behave in a way that might appear arbitrary. Why are we letting people do things in this park, but not that square over there? Because the people who are interested in this park are aligned with the spirit of contribution to public good, and they have capability to deliver. Who says so? We do. This is the polar opposite of @Matteo 's "strict rules often lead to standard, controlled and predictable output": if you, as a government, open yourself to bottom-up innovation you pay a price in terms of strict rules.

In David Graeber's book on debt there is an aside that stayed with me, and might solve the policy maker's dilemma. It is well known that Imperial China invented bureaucrats. The Mandarins were civil servants, centrally selected on the basis of merit and centrally trained. But they were not given a rulebook to apply. China is big, and communications were poor and slow; also, it was very unstable, with peasant revolts sprouting out every year. The Emperors knew that Mandarins would be on their own in distant provinces, and they would need to take quick action to prevent and quell revolts. So, they were trained in Confucian ethics rather than "law" as we understand it, and instructed to do their best to make sure the people were content and did not starve.

In modern terms, their operating mode was result-oriented rather than process-oriented, and buttressed by ethics rather than rules. I think Amartya Sen's work shows that this would be enough to ensure accountability. Which means, governments could, in principle, be hierarchical and creative and accountable. But that's not easy to do in process-oriented, formalistic legal systems and cultures. 

Is this something we could be discussing? Maybe invite someone from UNDP?


Public spending: how and where?

WinniePoncelet's picture

@Matteo I remember a discussion arising from this post. What is the role of government? The 'operating system' plays a major role... It's almost absurd to expect a bureaucrat doing full time bureaucracy work to speak the language, know the needs etc. of projects that are relevant. Yet if the bureaucrat spends more time on oversight and less on command & control, leaving the latter to the people who have experience in the field, it's probably more effective and cheaper.

Another thing I've been thinking about in the context of Open Insulin. Leaving aside if Open Insulin is the right approach, consider any project that is a long shot, ambitious and with a potential big impact on many parts of the world. It's hard to disagree (in my opinion) with long shots for systemic changes in eg. pharma industry, based on ethics. I haven't met anyone who is against it in principle, also not in government.

Though only a smaller part of such an impact is realised in the city where the project resides. In my experience, a city wants to support projects that have an impact in their city, the impact beyond that is of minor importance. Or, more extreme, they will deliberately not support you so that you go search funding up the chain, such as regional grant, because that results in an inflow of money into the city from elsewhere.

Not so popular to be funded by the city, due to the above, but also because they would rather support projects with an immediately visible impact, such as helping disadvantaged children or establishing a development aid link with an African town. This is of course great, but it is a form of symptom treatment, and for the cynical, mainly about the funder's next election cycle. Policy now seems more about adding new rules and exceptions to help very specific groups who have been disadvantaged, rather than taking ambitions decisions that address the root and affect everyone - from the same disadvantaged to the shrinking group of privileged people - to change the legacy of outdated rules. It should be a balance, naturally, but it's way skewed to the wrong side now.

A trick is to tie some concrete city level impact to the project - I guess OpenRampette would be a good example. Yet this is not always possible, especially in more complex projects.

Higher up there's also close to no room for eg. an Open Insulin in more formal and bigger funding programs. Rigid structures, but also lots of lobbying going on from, in the case of Open Insulin, big pharma. There, your chances are tiny and attempts are expensive. Ping @Lucy , maybe you can also pitch in.

Personally I see potential in the role of the city, just because there seems to be more room to be creative for those who dare. These long shot projects are not expensive in money either, especially considering the potential outcome. If five girls & guys in their garage can have a shot at changing an industry, imagine what a city could do. How badass would it be to read in the newspaper: "The city of Milan supports open source treatment for diabetes induced blindness".

So should a city support what emerges in their city, even if the impact is proportionately realised mainly outside the city? Considering they are dead in the water elsewhere, is it ethical not to support these projects at a city level?



markomanka's picture

Maybe, @Gehan, you might have a word of wisdom for me on this topic? :)