International access to research content and sensitive data – WS 08 2021

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30 June 2021 | 12:15-13:15 CEST | Studio Trieste | Video recording | Transcript
Consolidated programme 2021 overview / Day 2

Proposals: #13 #15 #17 #27 #30 #31 #35 #40 #50 #57 #65

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Session teaser

COVID19 has highlighted and reinforced inequalities in our society whilst introducing new challenges. Much of the sensitive and research content that was consulted on-site is now kept and used online. This has highlighted that, for many valid reasons, there are laws restricting the transmission of sensitive and research content online. Are they still fit for purpose? On the one hand, there is difficulty in bringing the content online and in accessing it. On the other, there is a challenge regarding legal aspects of data use. Is Europe's approach on data access, sharing and use suitable when remote working has become the new normal? Is Europe ready for all cloud services that do not know geographical boundaries? Where does the data reside and should it be open to non European researchers? Is Europe ready for Open Science?

Session description

This one-hour roundtable will focus on how Open Science is set to change the European data ecosystem within the immediate future. With international access to research content and sensitive data being increasingly cited as vitally important to bring about, how will both the public and private sectors in Europe respond? The following questions will be asked during the roundtable discussion.

  • Are the laws restricting the transmission of sensitive and research content online in Europe still fit for purpose?
  • Should European data be open to non-European researchers? And how will the interaction between public, hybrid, and commercial / industrial data work in this context?
  • What are the potential pitfalls of Europe opening up too early regarding Open Science?

These questions will be discussed during a one-hour workshop that looks to function as an open-floor discussion, with a limited number of key participants offering their initial reflections on the subject and opening the questions to the floor. The format of the session, and the key participants, are listed below.


The aim for the following format for this session is about creating dialogue.

12:15 – 12:20 (5 min): Introductions and opening
12:20 – 12:35 (15 min): Key Participants introductions on Open Science
12:35 – 13:10 (35 min): Roundtable discussion on three key questions.
13:10 – 13:15 (5 min): Key takeaways and close.

Further reading

Links to relevant websites, declarations, books, documents. Please note we cannot offer web space, so only links to external resources are possible. Example for an external link: Main page of EuroDIG


Until .

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Focal Point

Focal Points take over the responsibility and lead of the session organisation. They work in close cooperation with the respective Subject Matter Expert (SME) and the EuroDIG Secretariat and are kindly requested to follow EuroDIG’s session principles

  • Hendrik Ike, GÉANT

Organising Team (Org Team) List Org Team members here as they sign up.

Subject Matter Expert (SME)

  • Olivier Crepin-Leblond

The Org Team is a group of people shaping the session. Org Teams are open and every interested individual can become a member by subscribing to the mailing list.

  • André Melancia
  • Roberto Gaetano, EURALO
  • Auke Pals
  • Hendrik Ike, GÉANT
  • Amali De Silva-Mitchell, Dynamic Coalition on Data Driven Health Technologies / Futurist
  • Fotjon Kosta, Coordinator of Albania IGF

Key Participants

  • Fereshteh Rafieian – UNESCO (LinkedIn)
  • Sarah Jones - GÉANT
  • Birgitte Kofod Olsen - Carve Consulting

Key Participants are experts willing to provide their knowledge during a session – not necessarily on stage. Key Participants should contribute to the session planning process and keep statements short and punchy during the session. They will be selected and assigned by the Org Team, ensuring a stakeholder balanced dialogue also considering gender and geographical balance. Please provide short CV’s of the Key Participants involved in your session at the Wiki or link to another source.


Hendrik Ike

Remote Moderator

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Reporters will be assigned by the EuroDIG secretariat in cooperation with the Geneva Internet Platform. The Reporter takes notes during the session and formulates 3 (max. 5) bullet points at the end of each session that:

  • are summarised on a slide and presented to the audience at the end of each session
  • relate to the particular session and to European Internet governance policy
  • are forward looking and propose goals and activities that can be initiated after EuroDIG (recommendations)
  • are in (rough) consensus with the audience

Current discussion, conference calls, schedules and minutes

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  • Despite many initiatives for open science existing both at the regional and international levels, more can be done. Cooperation issues (different stakeholders have different views and interests) and logistical issues (e.g. digital divide and resources available) still pose challenges. UNESCO has actively and recently taken steps to favour international cooperation on open science, precisely stressing the existing common values shared by the international community.
  • On the infrastructure level, the main challenges are twofold. As the European Open Science Cloud (EOSC) case shows, a part of the challenge is linked to the development of platforms and services (and their funding) that allows for an open environment. On the other hand, security remains the main concern, especially in the case of cloud solutions. As a big part of the data at stake is sensitive, good security practices need to be put into place at the technical level and thought of since the design of such platforms (e.g. access restrictions, data licensing, PID assignments, and data anonymisation).
  • Ensuring security and trust is not only a technical matter but also a legal one. In the existing legal framework, there are already good and solid principles regulating access and sharing of Data (e.g. CoE Convention on HR and Biomedicine, the EU’s GDPR and Draft on AI regulation). In any case, to ensure the maximum respect of individuals’ human rights the interest and welfare of the human beings shall prevail over the sole interest of society and science.
  • However, the implementation of such legal principles in everyday scientific practice still remains an issue especially when it comes to what type of data is at stake and at which part of the data cycle the activity takes place. In this regard, it is essential to bridge the gap between policymakers and the scientific community through dialogue and education to ensure that the policies take into account the needs of researchers.

Find an independent report of the session from the Geneva Internet Platform Digital Watch Observatory at

Video record


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>> ROBERTO GAETANO: Hello. Good afternoon, everybody. So this is Roberto from Studio Trieste who will assist for the session. Let me just read out the session rules. Please enter with your full name. To ask a question, raise hand using the Zoom function.

You will be unmuted when the floor is given to you. When speaking, switch on the video, state your name and affiliation. Chat will not be stored or published.

Do not share links to the Zoom meetings, not even with your colleagues.

So let me now give the floor – oops – to Hendrik who is the moderator of this session.

>> HENDRIK IKE: Hello, everybody. I hope you can hear me. Thanks. I see nods. Welcome to this one-hour roundtable on the subject of international access to research content and sensitive data. It will last for one hour, between 12:15 and quarter past one.

And before I introduce the speakers, I will give a brief overview of the format that we are hoping to have today. So first five minutes which Roberto has just started, thanks Roberto and I myself will give the introduction and the format and the key speakers.

Then after that, the three key panelists, should I say or participants will give brief overview of this subject, especially regarding open science, research content and the challenges and the opportunities there are in opening up data in Europe and across the world. And they will each give a perspective on this – this subject for about five minutes with their own brief presentations.

Following that, there will be three key questions, which I will just give verbally, and I will ask each of the three participants to give a brief response to the key questions before I open up the floor to everybody here in this room to have more of an open discussion.

And that will last until five minutes before the close, because we will then be joined by – well, actually, Maria is here. Marilia Maciel from the Geneva Internet Platforms and these representatives who have been throughout the EuroDIG conference are actually independent rapporteurs who will nicely condense and give a summary of the key points of this roundtable. And then they will go into the final EuroDIG report recommendations at the end of the conference.

So that’s quickly how the format of the next just – well, now just under an hour will be.

We have three excellent women today, as our key panelists for this session. We have Fereshteh Raefyian from UNESCO, and then we have Sarah Jones who with is my organization, GEANT, and Birgitte Kofod Olsen. So what I will do is introduce, Fereshteh first. First, he’s an associate program at the section of science, policy and partnerships in natural sciences sector of UNESCO. Before joining UNESCO in 2019, she did her Ph.D. in biophysics at the biotechnology center of the technical university of Dresden, and molecular cell biology from Germany. So very good to have you, and if I could please ask you to give your brief overview of the subject from UNESCO’s perspective. I give the floor to you.

>> FERESHTEH RAFIEIAN: Thank you for the invitation. May I share some slides?

>> HENDRIK IKE: Please.

>> FERESHTEH RAFIEIAN: Yes, you see them?

Do you?

>> HENDRIK IKE: Yep. Yep.

>> FERESHTEH RAFIEIAN: Perfect. So, actually when I think about the subject of international access to research content, coming from UNESCO, I think the first question that comes to my mind is if we have enough international policies and frameworks for – for doing this. And I think from the beginning of open science movement, there has been many – many national or regional initiatives and agreements evolving but so far, we didn’t have any international framework for doing open science. And this is something that the UNESCO Member States have recognized in the last years. And this is why they asked the organization to develop such international framework for open science.

In the last general conference of UNESCO in November of 2019, the Member States asked UNESCO to run surveys of consultation with different groups of stakeholders of science and open science from different regions, and tried to understand what is the common, the opportunities of open science.

And so this is what we have been doing since then, and we tried to involve different groups of stakeholders from different regions, from different recipients and this led to a draft recommendation that was viewed by the Member States in several steps, and in May of 2021, and on the 11th of May, after some days of discussion, and negotiation, the text was approved by 100 Member States of UNESCO, with a view of adoption to – in the general conference, the next general conference of UNESCO.

And just to briefly tell you what are the main aspects of this recommendation, as I said, it’s an international framework for open science, and the specific characteristics of that is that it tries to recognize differences, the disciplinary or regional – the differences in perspectives that the stakeholders have to open science.

One big aim of this recommendation is reducing digital and technological gaps between and within countries. And it’s – it’s the – it provides the first common – common definition of open science, and shared values and guiding principles that are internationally accurate. It’s also – at the end it also suggests areas of acts for a fair and equitable, equitable operationalization of open science. I would ask you to listen to my colleague’s presentation, which is “Open Science to Leave No One Behind” which is today at 2:15.

We know that the open science movement from the beginning was driven by the developments in digitalization and Internet. So this already tells us that for making open science practices like for implying them everywhere. We need to ensure that digital infrastructures are accessible for everyone, wide band Internet is accessible and reliable Internet is accessible for everyone, and with this, I will go directly to the two areas of action that are recommended by the text. Which are number three and four, investing in open science infrastructures and investing in capacity building for open science.

So this recommendation text is emphasizing that Member States need to strategically and in a long-term view with a long-term view, they need to invest in infrastructures for science technology and innovation, and the infrastructures that are listed specifically in the areas that are, I think, more relevant to our discussion today are public and – public, digital infrastructures that are based on open source.

And like I think like open source characteristic of this infrastructures is very important, because it makes them more trustable. It makes it possible for stakeholders from different regions and different recipients to adopt the infrastructure to their needs and also to – for everyone to participate – participate in developing them.

So this infrastructures, they need to be accessible for all, but at the same time, they need to be internationally interconnected, and interoperable. And they need to be based on fair and care principles. So to enable FAIR and CARE data stewardship, meaning that the dateable needs to be findable. It needs to be accessible and interoperable and reusable. And the CARE principle, it’s the collective benefit of the stakeholders. It needs to respect the authority to control, and it also needs to respect responsibility and ethics.

So also this infrastructures need to be inclusive for different kind of digital objects that are important for science, including data sets, metadata or codes or publications. So each these may have some specific infrastructures. And at the end, it also needs to enable data stewardship for scientists of different disciplines.

And, of course, for all of these infrastructures to develop and also for scientists or those who support scientists to use them, we need to invest in capacity building for open science. We need to invest in human resources, training and education. And digital literacy.

And I think for us today, one of the main takehome messages of the recommendation is that transforming scientific practice to adopt practices to adopt to the changes of the 21st century digital era requires targeted research, education and training in the skills required for new technologies.

So with this, I thank you for your attention and I’m happy to answer questions in the next segment.

>> HENDRIK IKE: Thank you very much Fereshteh. It provides a framework to go into the real heart of the subject, which is the sensitivities around the sensitive data or the research data and it has to be open for all, but it also has to be internationally connected. What are the challenges we face there?

The recommendation will be officially adopted in November from UNESCO, am I correct?

>> FERESHTEH RAFIEIAN: Right. Right. And the text will be available.

>> HENDRIK IKE: Good. I look forward to seeing it when I can.

I think this is a good moment now to move intergovernmental institutional view of open science. We will now move towards the infrastructural perspective, which Fereshteh ended the presentation on. So I would like to introduce the next speaker, Sarah Jones who is a colleague of mine at GEANT. She’s the European open science cloud engagement manager, where she works with ENREN, nation a education research, which are GEANT’s membership base on supporting open science.

She is an information professional with over a decade working in research data services in the higher education sector at the digital curation center, she led the DMP online service and worked on consultancy and trading.

Sarah was rapporteur on the FAIR data expert group and independent on the EOSC, and she sits on the association board of directors. So quite well qualified to speak about open science, I feel. And I won’t waste any more time. Please over to you for your thoughts on the subject.

>> SARAH JONES: Thank you, Fereshteh and Henrik. The question that jumped out to me, is Europe ready for open science. That’s what I will reflect on the EOSC initiative. Yes, we are ready for open science. There’s been a huge amount of work that’s been done in this space already.

So the European Commission and the Member States have been investing a lot of money in this over the years. This diagram comes from Michelle Scoop from the European Commission and he pulled together essentially all of the key activities that have happened around EOSC to make this feasible. So all of the council conclusions and all of the different expert groups have been commissioned by the EC, all of the kind of key documents that have really set the framework for developing EOSC, and this have been major funding programs in various different projects and initiatives to build EOSC. Now I’m conscious that you may not have heard this acronym before, and I wanted to flag what the European open science cloud is. So that’s what this acronym stands for.

It’s not really the best term because we are not building a cloud infrastructure. I think maybe terming it something like a commons or data commons is better, because what we are really trying to do is build a web of FAIR data and services. So we are trying to have a core platform where we can Federate research data from different research communities and working with the different research infrastructures in Europe for that and also to bring together, have this exchange layer where we can have services from various different either commercial services or different services from universities or ELNFRA, they want to access data and bring it together to perform their own analysis and address the societal challenges. So this is really about the infrastructure layer that Fereshteh was talking about.

Now EOS C. by nature is a very complex and diverse initiative. It’s kind of multi everything. It’s multi-stakeholder because we’re working with all of different Member States, with the different funders and policy bodies in the Member States, as well as all of the different infrastructure providers and research communities, universities and all of these different countries.

And because it’s across Europe and it’s covering all the countries we also have multiple languages. We’re addressing all types of data. So from all different research disciplines, and I think one thing that is important for the discussion here today is that it’s not just open data and that’s a bit of a misnomer in the EOSC data. It’s sensitive data that has to be shared under certain restrictions. So all of these layers add complexity but the key point I would like to make in this talk is that sensitive data can still be shared. We just have to be careful about how we share it, under what conditions and with whom. And I think as Fereshteh pointed out, one of the key principles we work to is F AIR, making it findable, accessible, interoperable and reusable. I think some of the common principles we document data so people can find it but can also understand and reuse the data. We should be placing it in repositories or in the case of sensitive data, we need to use secure data services and we have much tiger restrictions around the access.

We should always be licensing the data. So it’s clear who can use it and under what conditions and, again, here with sensitive data, we maybe need to be more careful. It’s a limited cohort that can use that data or only for particular purposes.

In all cases we should be assigning persistent identifiers because that helps us discover data. It helps us identify, you know, where the data set is from. It also helps us track impact. We can see who is reusing data and that’s important for the recognition and rewards for researchers.

And in the case of sensitive data, we need to aggregate the data and before we’re sharing but we still can share data and we do have infrastructure that enables that.

So I think following these principles about making data FAIR and applying appropriate, you know, conditions on accesses, is all we need to be doing.

Now, the final point I wanted to make is really a plea to policymakers, funders or different service providers. I was recently at home and my dad has a really exotic plant growing out of his drive. It self-seeded from a neighbor’s garden and my dad is very much a live and let live person. Well, if the plant wants to grow there, I will let it grow there.

I think we need to approach the research community in the same kind of way. Research communities have their existing practices. They do what is natural to them, and we shouldn’t be trying to change that because openness and collaboration is at the heart of science. Researchers do want to share their data. They do work internationally, and I think if we build the right kind of infrastructure that actually meets those research community’s needs and workflows, it will be adopted and it will be used.

So I think we just have to be mindful of existing practices and working alongside those.

And that, hopefully is within five minutes, Hendrik.

>> HENDRIK IKE: Yes, I think you did very well, Sarah. I think that’s five minutes. Thank you so much. I really like the analogy of your father and the plant being compared to European researchers. I think it’s a good one. Make it very – very human. So thanks for that.

I have a bunch of questions but as we – the clock is ticking, I think it’s nicer to have our third and final presentation and then we can all dive down into the questions.

So without further ado, I will introduce Birgitte Kofod Olsen. She an attorney. As a partner in the Copenhagen based Carve Consulting she’s now focusing on integrating GDPR and data ethics in research and large corporations, as well as the public health sector and research projects. She’s a member of a number of advisory boards and panels on new ethics and was cofounding DataEthics in 2013, where she serves as chairperson. It’s a pleasure to have you here.

>> BIRGITTE KOFOD OLSEN: Thank you very much and I guess you can see my presentation?

>> HENDRIK IKE: I can. I definitely can.

>> BIRGITTE KOFOD OLSEN: So I, of course – not of course, but I would like to say that I agree very much with both Sarah and Fereshteh, that, yes, we are ready for open access to science data. The question is how do we do it?

And I think that when we look at the setting, the context that we have right now, in a digital – the digitized working environment, we have a tremendous amount of data. We have intelligence and machine learning to use as analytical tools, but also we have this intensive exposure of people’s private life, their health status, their behavior, their relations and so forth.

So it does require a lot of considerations when opening up for accessing research data and also health data. And I think – I think we could be – from my perspective as a human rights lawyer, I think three guiding principles that could show us in the right direction and that would be, for instance, in connection with the – with the setting up of the open science cloud solution, but also in what UNESCO is working on, the capacity building within this area.

And I think there are three really important aspects here to integrate in these developing processes and one is to actually use the existing real frameworks for exploring data in a new way. I think that we have a very solid legal framework right now. I will show you in a minute. And I think it is possible to maneuver within that framework also in order for us to explore data in new ways.

Another guiding principle, I think is to use available – available technologies that will help ensure that our fundamental rights and freedoms are protected in this new environment, where we want to exploit and explore data and that we have to use those technologies to make analytical work, research work more efficient, but also with an overall aim of having them benefiting all of us.

And then I think a third principle that could guide the development in this area, it would be actually to have as a starting point that the interest and the welfare of the human beings over the sole interest of society and science and that may sound a bit too much, perhaps that we say it’s always about the individual. Science comes next, so does the associated interests, but it’s actually expressed in a legally binding convention from 1997, the Council of Europe Convention on Human Rights and Biomedicine. And in that Convention, it’s started in Article 2, that we have this human primacy when working with biomedicine and we have to let that – let the primacy be given to the human interest rather than to science and society.

Also we have as you all know, the EU treaty, the charter on fundamental rights and the European Convention on Human Rights. We of course, have all the international human rights conventions, but what we have in Europe is this operationalization of fundamental rights into the GDPR on protection of data, personal data and the eprivacy directive on privacy protection online.

And if we look into the future, the near future, we will also have a new EU regulation on AI that will also have an impact on this area, especially because it will regulate risk and governance measures.

So I think we do have a very solid legal framework already now. And I think it also fits the idea of having open access to research consent and sensitive data. You just have to use it and perhaps also use it in a more innovative way than we usually would do.

And I have illustrated how is it that you can operationalize the existing legal framework in this – in this open science context. And if we look at the fundamental rights perspective, we would have to stress, ensure the dignity of persons, their self-autonomy, privacy data protection, all other human rights, fundamental rights, including non-discriminating. We would have a request for equality and sustainability that would have to be built in open science infrastructures, and capacity building.

We can do that. I think that the tool for this is already there. It’s the design – by the design processes we talk about security by science by design, ethics by design and fundamental rights by design. And we have to find ways to build this into the system that is going to open up for access to data.

And there was a Norwegian guideline where they explain different design patterns. Through the design of systems of software, of cloud solutions, you can ensure that the data is minimized and limited, and that you hide it and protect it and that you, for instance, have several storage and you aggregate that was a principle in the EOSC initiative that Sarah talked about. That everything is privacy by default, that you inform, and that is made part of the system design also, that you have this possibility to control both accountability and transparency. That was also in the FAIR principle, some of it. And you can actually demonstrate that you have done all of this.

So I think by integrating the logic, the thinking, the protection mechanisms that we have within the – that has been expressed in the legal framework, we can actually have a very strong basis for sharing the data among wider group of people. At the same time, as ensuring that – that anonymization, it’s not only used as measures when it’s needed, as you said, Sarah in your presentation, but simply that they are there by default.

And so I think anonymity is one of the key aspects, a key technologies that we should use in the way forward to – to ensure that open access does not have a negative impact on fundamental rights.

That’s all for now. Thank you.

>> HENDRIK IKE: Thank you very much, Birgitte. I want to thank you for the slide where you actually very concretely showed the different regulations and legislation in place, which do actually govern our data rights, as EU citizens. Because I work in – I’m – at GEANT, I do public affairs and I’m always looking at regulations and laws and legislation and it’s first time I have ever seen a nice map where I know I can look at each of these regulations. So thank you very much for that.

So we’re now moving on to the second part of the workshop, roundtable, should I say? And the first question which I would like each of the key participants to talk for just a minute on, perhaps if they can keep it to that and then I can ask follow up why questions. I think Birgitte, you almost answered first question in a sense. First question is: Are the laws restricting the transmission of research and online content. Now if I understood your presentation correctly, I think you would say yes, they are still fit for purpose but there’s upcoming legislation and regulation. So maybe I can see that the A I. regulation is coming up and maybe Birgitte, you can start off with a comment on that, on what we have to be careful for in the future.

>> BIRGITTE KOFOD OLSEN: Yes. It’s of course, very much focused on the use of algorithms and the use of AI for new analytical purposes and I think especially for – equating new awareness and also requirements, of course but government structures and data management models and how do we move about in order to demonstrate what you are actually doing, to explain what you are actually doing and that will, of course, also influence this area.

But I think one thing that I – that I perhaps didn’t say very clearly before was that I actually think there was one issue that has not been covered by legislation yet, and it’s not part of the AI regulation either. And it’s the whole – the concept of re-identification. I mean one thing is that we anonymize, but we all know that anonymization is not very strong. As soon as you start combining your data with other data sources, and actually back in 2009 – ’18, the German commission on data ethics they came out with a huge report and they suggested a prohibition against reidentification. I haven’t seen any initiatives within the EU or Council of Europe that moved down that road.

But I think that it’s actually – it is something that we have to discuss and debate and to find out how can we – how can we – how can we do this, because when we have access to all of this data, then, of course, people will start using data from the cloud solution or from the infrastructures together with other data sets.

And what happens then if you can actually reidentify specific persons? So I think that is not covered by legislation yet.

>> HENDRIK IKE: Okay. Thank you very much. If I understand correctly, reidentification is the data is essentially anonymized but if you can match parts of data together to see a common trend, then you can figure out where the source of the data has come from. That was something I was not aware of. Thank you very much. Sarah, what is your opinion?

>> SARAH JONES: Yes, so I’m not a legal expert. So I will definitely deflect that part of the question to Birgitte. But from my experience, I think we placed too much focus on not being able to share sensitive data. So it can be shared, but under the right conditions. So anonymized form, with appropriate consent agreement.

Often, you know, like researchers won’t always seek consent for sharing because they are just thinking about doing their own research. So you need to get consent for that too and restriction to groups I also noted this identification issue. Sometimes we need to check on the reuse of the data. When we look at the analysis that is done, the service will actually check that is there’s not any inappropriate use like reidentifying individuals.

So I think – like Birgitte, they have to agree with a set of determines. They are not going to combine data sets and identify and reidentify individuals and they will follow good ethical research process and all researchers should be following that anyhow because there are these codes of conduct in all universities.

Yes, I think the key point that I would like to make is that we can share sensitive data. We need to be more careful with how and whom and make sure the reuse is appropriate.

>> HENDRIK IKE: Thank you very much.

Before I open the floor, we already have a raised hand. So that’s good. I need to come to Fereshteh on this topic. Do you have any comments on the current laws? I guess we are talking about Europe, that is EuroDIG, but I know that UNESCO is completely international. So perhaps the current legislative frameworks across the world, how do you feel, are they fit for purpose on this subject?

>> FERESHTEH RAFIEIAN: So especially for Europe and also internationally, I’m also not a legal expert. I want to talk about my own experience when I was a scientist.

I think what is restricting the scientific content is not the legislations. I think lack of awareness and lack of dialogue between the scientists and the policymakers is more of the issue, as are also referred to that.

There are – there are practices in the scientific community, and there are policies, but I don’t think that there is enough understanding or dialogue between these two sides and I think most of the scientists in Europe also are not aware of possibilities for sharing their data and the research content and I think this is something that specifically a scientist needs to know from the earliest stages of their scientific protection.

I think these are more of the restrictions than the laws that I’m not completely aware of.

>> HENDRIK IKE: Thank you very much. I’m already feeling very happy that we have our representative from the Geneva Internet Platform, because I’m hearing so many clear recommendations for already which is exactly what we want from this discussion.

So we have people would want to talk in the room. I will – I see two raised hands one from Auke, and one from Maryanne. Auke, we start with you.

>> PARTICIPANT: Thank you very much, Hendrik and everyone for your clear presentation. Your presentations and also your discussion now really touch upon a topic that really needs to be discussed, in my opinion.

Myself, I’m a big supporter of open standards and open data, and having the possibility of sharing data to and with, yeah, with whoever you like, actually. However, for me, it’s hard to understand – to understand the business model of open data in this research environment, because I can imagine that most research can be publicly funded. If that’s the case, I would imagine that you are more easy to share it than if it’s privately funded. I can also imagine that it destroys the business model of the researcher and the research itself.

And I can’t imagine that afterwards if you want to be publishing this, this data can already be outdated, for instance. So what’s your opinion on that? I guess Sarah, this is a question for you maybe.

>> SARAH JONES: Yeah, sorry can you repeat the end of that, because I didn’t quite follow.

>> AUKE PALS: Yes, so if the research is publicly or privately funded, can business model be destroyed by being publishing and by being open about this data that’s been gathered or does it conflict with the business model in principle?

>> SARAH JONES: Yeah. Yeah. So I think this is one of the challenging things with the commercial sector because people feel like you have to not make the data open, you know to get the business benefit from it, and people are reticent to share. There was an interesting study done by – it was Lancet data, so satellite data in the US, and initially they used to charge if you wanted to see any of those images you had to pay per image.

And what they found was that actually it was a lot of researchers on NSF funded grants that were getting grant money to pay for the data. They said we should make it publicly available. Because we are moving funds from one private. And then they made it publicly available, the return on investment. It was several fold. I have the stats on some slide.

When they made this openly available, it generated lots of reuse. Many businesses were set up, lots of start-ups could use that data and produce, you know, new kind of software tools around that data, lots of other kind of sectors that they weren’t expecting to pick up on that data picked up on it.

I think in some sense, it does destroy the business model, but it also does a huge new business model to being open. So I think sometimes it’s a leap of faith and I can understand that people don’t always like a change in the status quo, but I think – I think there is a huge benefit to being open and certainly, when we’re thinking more about just what is important for science as a whole, if we are closing things, we are slowing everything down by making it harder for us to actually perform our science.

So being open has a huge benefit for society at large, but also for industry. So I think there’s a much bigger kind of economic return as well as social return.

>> HENDRIK IKE: Thank you, Sarah, for answering Auke’s so eloquently.

I would like to give the floor to Marianne Franklin who has had her hand raised.

>> PARTICIPANT: Hi, thanks, everyone. Such an important panel and I really wish there were 10 times more people here listing to this, because – and I just put this on the chat. I won’t speak towards, this but the issues here are enormous and the ramifications. So Sarah’s metaphor with your dad’s plant is very, very apt.

What do we mean by openness? Openness is a relative concept. When we it comes to the public health crisis, that we are living in, yes, totally in place and important. When it comes to hard data, such as survey data, biometrics, the sorts of things that the COVID-19 pandemic response needs, we all know that intuitively that sharing is the best premise. My big issue is, how are three high level frameworks which I totally support and the spirit of them, I support, and how do all of these illusions to fundamental rights and principles or existing human rights law to privacy, to the right to information, the right to education, these are all very high level principles. How do we bring this down? What are these frameworks? What are the people behind these frameworks, the organizations behind these framework, whether they be international organizations or various sorts of NGOs or think tanks. How are you bringing this down into the research institution?

This is not just about hard science in the lab or physics or biology or chemistry. I have students conducting surveys using commercial tools with no idea about where the tool is keeping the data they are gathering, about quite sensitive issues. I work officially in an arts and humanities faculty, though I worked in social sciences as well and I have worked in engineering schools.

So, I mean, some of these data are very sensitive in terms of attitudes around social mores. How do we bring the high level frameworks and how do we operationalize these so that the research committee chairs, senior management – I see you all grinning. Humble supervisors for undergraduate, how do we get them to realize that this is important, as we enter an era where our national organizations are making it mandatory so had I have called open access?

This is the point that Auke is bringing up in my mind. What is open access, open standards and open data? I think open data means various things.

So, yeah. And also the cost. The cost. Who pays? I mean who owns the data in the first place? Actually technically it’s the research and it’s not even me as a researcher. It’s the person I interview whose data I actually am a guardian of. So effectively, they own the data. They permit me to use the interview material, or the survey data I gather.

So there’s enormous issues at the cold face of research that’s not just about labs which are much tiger and more regulated thank goodness. But we get into the more looser and the social sciences and the arts and humanities these issues are pressing. Huge interest and huge comments. We cannot resolve it today. Thank you very much. I’m interested in any comments.

>> HENDRIK IKE: Sarah.

>> SARAH JONES: Yeah, no, I was going to say, I come from an arts and humanities background as well. And I think it’s all well and good having these policies and principles but, actually, people will do what works on the ground.

So they will use commercial tools or Survey Monkey or Word documents and you may not have control over where the data is stored or how it’s reused.

I think, you have to have support services in place. Unless there’s something there that enables somebody to follow it, they will not follow it. It has to fit researchers working practices like I said on that last slide.

And we have to have the right kind of infrastructure and the support in place, that it makes it easy for somebody to follow the policy. So I think that’s the – the main point, how you do that is quite difficult, because you have to, you know, make the case to the PVC for research or, you know, the finance group at the university and get the investment so that there is support and arts and humanities are usually like the least well-resourced department. So even if there is a solution, it might be better fitting of other disciplines. So you may have other people suffer in the system and doing what is easy and works. So I think it’s a challenging thing but we have to address the culture and the technology side to make sure there’s appropriate provision in place.

>> HENDRIK IKE: Thanks, Sarah. Birgitte or Fereshteh, if you have any other comments on Marianne’s comprehensive question. And then I will go on to Jacques would has a hand raised.

>> BIRGITTE KOFOD OLSEN: I feel like mentioning as a lawyer, you should be aware of the GDPR. That regulation is actually operationalizing the fundamental rights that are relevant in an online society, in a digitalized age. And so the problem lies, actually with the university and the research institutions, they have to ensure – they must ensure that the researchers, that the students work in compliance with the – with the requirements in the GDPR.

And that’s I didn’t find it so important that also in the UNESCO capacity building activities, that – that these requirements who are using data, that it’s purpose specific, that you cannot share it actually with everyone you want to. It has to be purpose specific processing, and you have to ensure data minimization. You have to ensure anonymization, and it’s a problem that these rules that are already there and existing and legally binding, that they are not implemented, that they are not maintained, and that the students are not taught how to collect data, because it’s – it’s not enough to say, I don’t know where data is. I just use commercial tools, commercial tools can be okay. But you have to ensure the data is not installed in China, that you have the data processing agreement and you have tools in place and so forth. So there’s a lot to do in the research environment, I think, the research institutions, whereas in the private sector, I mean most companies by now, they have these things in place.

They may not be 100% efficient but they are there, and they have their data processing offices, the data protection offices who are reviewing and controlling that everything is in compliance.

So that’s just to encourage you to – to take that with you into the research environment and tell people how they are going – how they are expected to collect and process data and especially sensitive data.

>> PARTICIPANT: Could I just correct something briefly. Yes, point taken. This is mandatory. This is a regulation. So GDPR is in place. Compliance is more than GDPR. So this question is taking on – taking its – it’s given that the GDPR is in place. We’re talking about the nature of openness within the GDPR framework. So I take your point but rest assured the institution in which I work is very well aware of GDPR, even if the compliance is what we could call thin compliance.

>> BIRGITTE KOFOD OLSEN: If you look at the GDPR, then you will see that it has as a purpose to protect all fundamental rights. It’s not only about data protection. So when you do your risk assessments, when you do your data impact assessments, then you actually come around the whole set of human rights and fundamental rights also to ensure that you are analytic tools are not creating guidance, for instance, and other discriminatory effects.

When you work with GDPR, you work with a whole fundamental set of rights and the right to respect with dignity.

>> HENDRIK IKE: First – okay. We have – we have five minutes left before I have to – I have been a terrible chair. It’s been too interesting for me to give us too much structure. I will get back to how we can fix that later. I think we need Fereshteh and then Jacques.

>> FERESHTEH RAFIEIAN: I would emphasize on some of the points, and I think Marianne, these are very relevant. All the stakeholders who participated in developing the recommendation. They are aware, and also Member States that open science is not free science. And that’s why the recommendation is recommending the Member States to invest at least 1% of their GDP in science and the science funders to include all the costs for open science, in this.

And I – I mean also – so open science is not free, but it’s shown at least in Europe, and especially for FAIR data that investing in open science or FAIR data pays back. I think these are like successful practices that Europe presently has and it’s very important to share that with developing countries.

And also for – like to make sure how at the – like at the level of risk and at the level of scientists, these things can be implemented. I think to ensure this, the most important is to involve scientists in developing this framework. So then they can implement it, but if it’s coming from another place, it’s not as easy to imply. Thanks.

>> PARTICIPANT: Okay. Well, I’m co-secretary of the Swiss IGF and I would like to share with you the outcome of our discussion we had just last week at the Swiss IGF on the interesting question whether we used digitalization enough in the COVID crisis.

And we had partners from all corners, including pharmaceutical industry, and what came out in the end and we also heard in our messages that it’s not only about education where, I think I can fully concur that it’s been said before, for the science community, but also about for regulators and in particular Data Protection Authorities, that there is some kind of struggle between fundamental rights in a sense of data protection, but also right to health and to well-being, and this should not be underestimated in the overall discussion.

I personally experienced it when negotiating under the roof of the Council of Europe on the health data recommendation, that there it was very biased the discussion, in favor of data protection and actually, other – other rights such as was pointed out, health well-being are somehow neglected.

So I think we need to educate not only scientific community about GDPR and so on, but on the other hand, also educate regulators of all colors that there is a multi-goal agenda at play also in the European Union.

>> HENDRIK IKE: Thank you very much, Jacques. That’s good. Thanks for bringing the Swiss IGF perspective here because this is going to make a part of recommendations too. So that bias is something that it’s very good to pick up on and spread that message. So thank you.

I have a question in the chat for I think – where are we in Marco Lotti who is also our rapporteur for today. He has a question, if we overrun by a few minutes, that’s fine, actually, because it’s running into the break. So Marco, over to you.

>> MARCO LOTTI: I had a couple of quick reflections on the exchange that took place, especially because the Geneva Internet Platform which I’m a part of is based in Geneva and since there are many research institutions here. The issues are absolutely relevant but are also not uncommon. So my two reflections were on these two issues, one is type of data at stake and second of all, which part of the data cycle are we considering?

Why am I mentioning this? This is a general precedent, I don’t have a legal background.

Some legal references and frameworks were cited but one of the challenges that constitutions here in Geneva are complaining about, if I can say so, it depends what type of data we are talking about. If it’s a health institution, it’s a different type of, let’s say rationale. If I’m dealing with weather, it’s different. If I’m the CERN and sharing physic particles, it’s different. So are there actually – can all of these principles be applied a little bit regardless of the type of scientific data that we – we can take into consideration? Also because today we talk about the scientific data as a general label, but we didn’t specify, again what type of data.

The second point is I mentioned what type data life cycle.

Again, when it comes to the legal framework, another thing there’s emerging in the discussions in Geneva is regarding what type of legal framework we can apply when it comes to the collection, when it comes to the analysis and the sharing of data. There’s limits to the existing provisions depending on which phase of the data cycle you are in. So my question would be, since some of you are a part of scientific institutions is there a dialogue or are there places where scientific institutions that deal with different type of data come together and at least can exchange on best practices?

I know that it’s trying to happen here in Geneva but it’s not always easy because the CERN doesn’t seem interested in talking to the methodological. But this is all for my side for a moment and it was just general reflections thank you.

>> HENDRIK IKE: So who –

>> SARAH JONES: Do you want me to make a start?

>> HENDRIK IKE: Yes, Sarah, please.

>> SARAH JONES: So in terms of the type of data, there’s lots of reason data might be sensitive, but I would maybe draw a differentiation between data that’s about individuals so that it has something to do with the human subject, whether it be, you know, their personal details or things about their opinions and views or whatever, their medical data, because I think that’s really where you have more sensitive concerns and where you have to handle the data a lot more carefully.

You know, the data that we get out of the large hadron collider don’t have the same sensitivity issues.

And then the second question was about the stage of like the research life cycle. I think there’s a lot of good practices out there, about how you even begin to plan your research, how you think about like the right methodology to apply. Obviously if you are dealing with sensitive data or working with human subjects, you need the consent agreements to make sure that you are starring that information appropriately, that it’s not going to be, you know, people accessing it who shouldn’t have access to it and then you need the permission to share it and share it under appropriate licenses.

There’s a lot of good practice from the social science community in particular on that. And there’s a network called CESSDA. Before I formally worked before GEANT, was at digital curation center. They practiced and managed and shared data and the things that researchers need to consider at each stage.

>> HENDRIK IKE: Thank you very much, Birgitte.

>> BIRGITTE KOFOD OLSEN: Yes, from a legal perspective, you talk about personal data and then nonpersonal data. There is an EU regulation that set up requirements on how to handle data sets where you have both types of data, but personal data or personally identifiable data, that’s the term you use in the US. That’s where you can identify the person whose data it is or the person that the data will reveal something about. As soon as you have personal data, then you have the risk for impacting the fundamental rights. And what is important to know today is that a lot of data is actually personal data, so your number plate would be personal data because it’s possible to link the number plate to your name and address.

The data that you get from the electricity grid, showing how much energy I use on a daily basis, that can be analyzed and used for actually, defining how many people are living in my household, are they men or women? When do we go to work? When do we go off to vacation? That’s things that can be uncovered by using electricity consumer data.

So – and if you do that, then it’s personally – you can identify the persons and that makes it personal data.

So that is when you look at it from a little perspective and EU world perspective. Concerning the life cycle when we talk about processing of data, then it covers the whole life cycle from collection to analyzing, to uploading, to storing to disclosing, to accessing, to – even to deletion, that’s also part of the concept of processing.

So you would say that regulation protecting data – data privacy fundamental rights that’s a whole life cycle of data in a – but only if it’s personal data.

>> HENDRIK IKE: Thanks, Birgitte, it’s nice to have someone to explain the complex legal data Fereshteh.

>> FERESHTEH RAFIEIAN: I think all the important things are said and I leave the floor to you.

>> HENDRIK IKE: Thank you very much. Yes, well, as I said, we only managed to ask one question, and we had another question based on the geographical content of how data should be shared. And also your opening up too early and too quickly for open science, which I feel is, you know, that’s – this’ a lot of premise is that question which would have been interesting to unpack, but we have run out of time.

So I will actually – I will give some closing remarks after Marco’s summary. So Marco, I will hand it over to you.

>> MARCO LOTTI: Thank you very much, I’m one of the GIP reporters. We will publish the report from this on, so if you are interested in other sessions, you will find the summaries there that other colleagues have written up.

Another task, that we were supposed to do maximize in three or four messages the essence of the discussion and include some takeaways. I was able to try to condense – I tried to condense it in these messages and this moment is for me to read them aloud. It’s not to go into UN voting mode. The EuroDIG Secretariat will send you the link to it on collaborative platform where you can add messages and comment on them afterwards.

So again, I will read the first message and see whether you agree or not.

Despite many existing regional and local initiatives for open science, international frameworks for open science are only partially being developed, UNESCO has actively and recently taken steps in this direction. This is among things due to cooperation issues, different stakeholders have, of course, different views and interests, but also to logistical issues, it could be a matter of digital divide or resources available.

So more work has to be done in this regard especially at the international level to ensure that we can all benefit from open science.

This was first message that was capturing the introductory part of the event.

Is there any strong opposition to what you see on the board?

>> FERESHTEH RAFIEIAN: Not strong opposition but this can be interpreted that like the differences in perspectives can be – can make this impossible or difficult, but I think there are some common – common interests and common values that also in the recommendation, the that focuses on this and I think despite all the differences, it is possible to find common areas between different disciplines and regions.

And I think for the beginning of this process, we can start with the common – the common areas and then this helps also to find solutions for more tricky parts or – yeah. So this is what the recommendation is trying to do. To find the common areas.

>> SARAH JONES: And maybe a slight follow on there, that I think there’s quite a lot of international frameworks in particular research disciplines. So if we think about groups like astronomy, they set up the way that they make all of their data interoperable internationally and so there’s already a strong framework for science that is open across that whole field. I think we want to say operational frameworks that are only now developed. I think there are some that are advanced in that field. And the work that UNESCO has done is also fantastic.

I think emphasizing that there’s quite a lot that building off and there’s more to do on the policy side and the implementation side and but there’s already a lot around open science.

>> FERESHTEH RAFIEIAN: I totally agree.

>> MARCO LOTTI: So the two corrections there as a lot out there internationally on this regard, that it pertains to specific researches or feeds or fields and if more work has to be done, it has to start to overcome the existing challenges. We can start from the common biases which exist and which are out there. So I will modify the message along these lines.

If we can go to the second message?

This focuses more on the infrastructure level. So on the infrastructure level, the main challenges are twofold. As the EOSOC shows, a part of the challenge is linked to the development of platforms and services and their related funding that allow for an open environment. So, on the one side we have the technical layer. We need to have those platforms. On the other hand, security remains the main concern. Especially in the case of cloud solutions. As a big part of the data at stake is sensitive, or can be sensitive, good security practices need to be put into place at the technical level and thought of since the design of such platforms, restriction on the access, licensing the data and assigning the PID and anonymization and breaking it down on the infrastructure itself do we have the platform and how can we – what can we do when it comes to security at the infrastructure level. The third message will consider other frameworks. Are there any comments on this message?

>> HENDRIK IKE: Looks like you got away with that one, Marco.

>> MARCO LOTTI: We can go to the third message. Ensuring security and trust snot only a technical matter, but a legal one. In the existing legal framework, there are already good and solid principles regulating access and sharing of data, the draft on AI regulation. In any case to ensure the maximum respect of individuals’ human rights the interest and the welfare of the human beings shall prevail over the sole interest of society and science. So this focuses on the legal framework, maybe it – yeah. It can be edited a little bit in regulating data. I can put processing of data it so it comprises all the phases and, yeah.

I just want to check if you agree roughly with this message.

>> HENDRIK IKE: Brilliant! Marco, I know how deceptively difficult that is to condense all of this information.

>> MARCO LOTTI: There is a last message. It can be taken away and agreed, but if we can go to the last one.

It just condenses.

It should be – yes, I can see it in the slides.


However – so it’s a little bit of a negative remark to the previous message. However, how to operationalize such legal principles still remains an issue, especially when it comes to what type of data is at stake and at which part of the data cycle the activities takes place. In this regard, it’s essential for institutions to put into place internal solid support systems that can support the scientific research, both in terms of financial and legal support. So from the financial and the legal side. I tried to concentrate in a nutshell the Q&A. But let me know if there are any comments.

>> SARAH JONES: So I – I’m sorry. Birgitte, do you want to take this?


>> SARAH JONES: The need for legislators, policymakers to liaise with research communities because I think when we are putting legal frameworks in place, we need to understand the research need and try and make sure that there’s a two-way dialogue there.

So that might be worth trying to reflect in this final point.

>> MARCO LOTTI: Perfect.

>> PARTICIPANT: I can fully echo the need for dialogue, but what is lacking for me is the best part, education. But, of course, it’s a – that’s not a big way from dialogue to education. But what really is covered in this IGF was really that people are just either on the one side or the other side but they just don’t know enough to tackle this difficult topic. So we should put in education.

>> Perhaps raise awareness. Would that work for you, Jacques?

>> PARTICIPANT: That would be great as well. This is raising awareness is for me a little bit too much policy.

>> PARTICIPANT: Is it really? Okay.


>> PARTICIPANT: Well, maybe you – through education. I take the point. I see on the chat that Marco has done a brilliant job with the messages. They are usually too short but these are just perfect, capturing complex issues.

Yeah, I would like to see the tablets come down from the top of the mountain to meet. (Chuckles) to meet the generous populous. I mean I have taken a very sort of negative view from the point of view of everyday practice because I have to educate all the time. So, yeah. I think we’re hopefully can continue this conversation. So, yeah.

>> HENDRIK IKE: Thank you. Birgitte.

>> BIRGITTE KOFOD OLSEN: I think it’s important to say it’s not the operationalization of legal principles because that has already been done. Also, in practice and in – this is from the Call of Justice in Luxembourg and the Human Rights Board in Strasbourg and what is important is to say it’s the implementation in everyday practice that is lacking.

>> Yes. Point taken. Correct. I agree.

>> FERESHTEH RAFIEIAN: Yes. And I think for that implementation then we need to emphasize investing in education and raising awareness is very important. So I think we already have some answers how to operationalize – it’s a difficult word for me – to put it in place, but we need to invest in it. It’s not like it’s – it’s not achievable in, like, overnight.

>> PARTICIPANT: And I would like to concur that raising awareness is, well, at least also scaring researchers. They know about the legal framework. They make big detour around it, which somehow is not in the best interest of society.

So it’s about making understanding or locating in the sense of – making understanding why the regulations are there.

>> FERESHTEH RAFIEIAN: I think a part of that is there’s not enough incentive for the sciences to do so, otherwise they would do that.


>> HENDRIK IKE: Thank you very much. Marco, I’m sorry I cut you off too early, earlier but I see that your screen has gone down, so I presume that’s all of the messages displayed and adjusted.

Before I let everybody go, Marco, do you know or maybe Roberto, you are better to answer this. How and when we’ see the final recommendations?

>> ROBERTO GAETANO: I think it will take a couple of days. Well, actually, this is the last day. Maybe the day after tomorrow, and then – and then there will be the possibility of fine-tuning further the messages.

>> HENDRIK IKE: Okay. Thank you very much. So thank you, Marco for a job well done and I want to thank everybody would has attended because the conversation has been fantastic and despite – I completely agree with Marianne, I think there should be ten times as many people here, considering how good the quality of the conversation was and I really want to thank the key participants who I think bounced off each other really, really well with their different perspectives.

Thank you very much. I wrote in the chat that if you want to stay in touch, and it seems because having done this I know that I’m going to do exactly the same thing next year with more time. And I think I would really enjoy that.

If you want to stay in touch in the meantime, because it would be a shame to wait for a year, send me an email. I put it in the chat,

Thank you, Marco, for the very good condensing of the points and thank you everyone.

>> SARAH JONES: Thanks to you, Hendrik, for chairing.

>> HENDRIK IKE: It’s been fun too. So Roberto, from EuroDIG is there anything else I need to convey before I close the session?

>> ROBERTO GAETANO: No. There’s nothing. The big stage presentation is going on. It has already started. And then the – the new appointment is at 14:15. For the keynote presentation on open science done by Anna Petro of UNESCO.

Thank you all for participating and I think that I can close the session and go to the music background.


>> SARAH JONES: Thanks. Time to dance.

>> HENDRIK IKE: Take care. Bye.