“I wonder whether any ethics are applied in collection of samples of Ebola and HIV/AIDS in emergency situations. When I talk to doctors about it, they are aware that some researchers from the developed world provide expertise and fund research in pandemic situations. But there are issues on data collection ethics based on informed consent by subjects that deserve scrutiny, given the emergency situations and language barriers under which data is collected. Are there Memoranda of Understanding between African governments and researchers under these conditions? There is a need for transparency and openness. Given the extensive ethical regulations for research on human subjects in the developed world, African countries – which are prone to pandemic disease problems – must engage in the discourse on ethics of data collected under the unique situations that they experience.
It’s the same in the humanities and social sciences: researchers come and take and go. It is rare for research projects to include funding in the initial project proposal for reporting back to the subjects of the research. In Botswana, there was a national scan for indigenous knowledge. We were promised there would be a report back [to the community], but the [research team] never came back. And then researchers are surprised that participants don’t trust them!
Colonialism was first about land resources. Now, without open access, globalisation of research may become the next wave of colonisation. Lower and middle income country researchers need to engage in open debates among themselves on the ownership of data, and how to develop collaboration from collection to analysis with a view to facilitating shared benefits and innovative re-use. Only in this way will the issues of intellectual property rights be negotiated in an equal exchange. All researchers – but especially Africa’s researchers – should reflect on the necessary policy and regulatory frameworks that should be negotiated with local institutions and national governments, as part of their intellectual contributions to evidence-based solutions and sustainable development.
Openness is about exposing your strengths and weaknesses. No one should be intimidated that some have more money. Others have ideas.”
“I’m very passionate about open science. From where I stand in the context of Africa, there’s so much data we create in government, universities or communities. But at the moment, data, which is the base for reports and provides evidence for government decisions, is not accessible to all except the researcher and specialist research reference committees. The Botswana Government has a closed research culture, as does the local research community within the academic and private sector circles. As a librarian, that has always been my concern. When work is done in that way, you find that the resultant data is archived and owned by the funding authority.
The current system is dysfunctional due to a lack of regulatory mechanisms, appropriate follow-up processes and systems for creating national open databases. Without reliable databases for research reports, research data cannot be open or accessible.”
“My background is in the political and social sciences, and I can connect with a lot of the ethical issues, the equality issues, making data sharing genuinely equal here and in other countries – that’s important to me.
I get a kick out of helping researchers. Working in a library context I was helping a student find an article they needed. Now I can sit down with a researcher and provide reassurance on their data management plan and that’s important too.
Having enough technical knowledge so that you can understand what’s going on, and also using liaison skills – I really like that combination. There’s a whole community at the university that is interested in open data, there are all these people who are really excited about it. I’m excited because there’s a community who is excited about the same things I am. It’s good that everyone’s still working out solutions for data sharing; you want to help build these resources, and a culture change.
But in the social sciences and humanities, we need to recognise we actually have data. There needs to be a default to open, which relies upon a change in culture and policy. We can archive some of these datasets through liaison with young researchers and learning how researchers work. Young researchers are going to be sustaining the effort, but this needs everyone’s participation.”
“Science is about discovering that things aren’t as you expected. The more I learn, the more I realise I don’t know. One of the fun things about what I do just now is that I get to see a lot of different research communities and how they conceive of and represent data, and what data mean to them.
There are really a lot of different discipline-oriented communities. I come from a domain repository – we just called it a data center – and for me, it’s interesting coming from that environment as opposed to the library, institution, repository, or iSchool environments, who are dealing with very similar issues and approaching them with different perspectives.
I do think in some areas there is emerging consensus and that’s exciting to see. The very fact that everyone accepts PIDs on data, that’s almost universal, we might argue about which one, but the strong consensus is that there should be something. We’re seeing greater convergence about metadata standards, too, particularly in my field. I think we’re getting better at listening to each other from different domains – historians and ecologists discover they have the same data problems. This makes them feel they’re not alone but also that their problems are generic and can have common solutions. There is a community. When I first started at a data center 25 years ago, I’d be the data person at science conferences. That’s not the way it works any more.
We are in dire times just now. We seem to be in an age of growing authoritarianism, and some people are trying to pretend there isn’t evidential knowledge. This makes research all the more important. Data sharing, open knowledge, open data, it’s more important than it’s ever been.
“My first job after university, I was doing computer stuff in a medical research place. I got a reputation as someone who was good at rescuing things off of old tapes and punchcards. It had been expensive to collect that data, and people had sometimes suffered in providing it. But it was also a detective job and it was important. But it was disappointing (though great for me professionally) when years later, I could come back into the field, and the sense of what was wrong then was still there. We still lose data because it’s on some piece of media that someone neglects or we’ve lost the documentation. Or we lose it because nobody knows where it is. If we don’t know it exists someone goes and repeats the work.
Now being able to work with this community of other people is great, making sure that stuff that could be of value in the future gets kept – it matters in lots of ways. It matters because it saves us money, and that is important because it’s our taxes. And it matters because collectively as a society we’ll learn stuff from it: data can help prevent disasters, it can help improve crops, and many other important things in society.
This community is important to what I do every day. The only negative thing is that it gives you the sense of too many possibilities. And you think, ‘Yeah, I can help you do this thing’. And you don’t have time to do it all, which can be a crushing disappointment. But it’s so nice to learn a bunch of things, and it’s an embarrassment of riches – things you can go and do, people you can collaborate with. My job is often telling one group of people, ‘Hey, you should know about this other group’. If that helps someone to reach out and collaborate, I feel like I’ve done something positive.”
“I really love this group of people who work on data management and sharing. I’m excited to be part of this very welcoming community. I never experienced this elsewhere – it’s very nice to collaborate, to network. People are really happy to do work voluntarily. They are people who want to do not just their day to day job, but to change the world!”
“Helping researchers to manage and share their data is what really motivates me. I was a researcher before, and much of research is not shared because the only incentive is to publish in ‘high impact factor’ journals. Nobody cares about what you’ve found out as an early career researcher, unless it’s published in a ‘high impact factor’ journal. I want to share more of the science of discovery. I love contributing to this change.
Data sharing is such an important part of opening up science. What’s really rewarding is when you explore with researchers how they can open up their research. People get a sparkle in their eyes. For me to get one convert really matters. That’s what I’m most happy about.
It’s really important to understand the people you’re speaking with, to have this connection. There is never enough talking and advocacy, having a personal connection and understanding their motivation. That can’t be solved by any technical solution. It’s social change, cultural change. I strongly believe as an ex-scientist that it’s so important to change the reward system for research. It’s got to be transparent and get beyond only valuing what’s in the ‘high impact factor’ journal.”
“We need more south–south collaborations. I’d like to approach this and get in touch with people I’ve met here, and I’m trying to identify other people in Latin America that have the same interests. Our data problems might be different from England or Canada or elsewhere in the north. We have a lot of data that might be at risk of disappearing in the next few years, and this might be a bigger problem in developing countries.
I’m also concerned about how the southern hemisphere is going to contribute. How do I get the funds that I need to get the work done that I need to do? Trying to be part of this community is going to be a challenge for financial reasons. I would surely not be here except for GEO and CODATA support; this was very special for me to receive that funding. Otherwise I would miss this incredible opportunity for networking and knowledge sharing.
I think that open science is the only way forward to answer the complex problems that have been presented by society. These problems are not local and involve so many different knowledge domains. We need to do science from a more collaborative perspective to be able to tackle these challenges. Collaboration is what I’m really passionate about. When I return to Brazil I’ll start to talk to people and see how we can go from here.”
“I’m a molecular biologist, not a data scientist. My recent PhD, however, was in information sciences and my concern was with knowledge management inside research organisations, but now I understand this includes data management.
Technology is very important, but I would like to know more about the social and cultural barriers that people are faced with when managing data, and how organisations may overcome these. Of course, the data professional is not a single person that meets all the requirements. We need capacity building: it’s all brand new for us in Brazil, and there are many challenges. One of them is the participation of women in these discussions. One of the talks that was very special at International Data Week this year was Christine Borgman’s. She had this very broad perspective, a holistic view on open research data. I expect for the future we can see more and more women engaged and have an active voice.”
“I entered into the data profession about three and a half years ago. I found the community to be very welcoming. The ideas of ethics and sustainability are starting to be brought forward more strongly now. Data aren’t just digits in the memory. They have real world effects in real world situations.
One of the things that drew me particularly to the idea of preserving data, is to build on the research investments that people have made. People spend their lives exploring questions. If the information and data those answers are based on, aren’t kept useable in an understandable way, then the answers themselves are also lost. The end result is so many wasted lives when you add it up. It’s the time invested in the exploring these questions, but even more in a broadly humanitarian way, these answers are pursued to improve the lot of humanity. If the data collected through research are lost, the answers themselves are lost, and so the people, the environmental effects are also lost. So I think that’s my most important concern.
Look, I like efficiency. I like effectiveness. Not taking care of things you’ve spent time making, not making sure they can be used effectively – that’s a waste of everyone’s time and effort. It just bugs me. Data is the starting point for any answers we achieve through research. Let’s not waste that effort. If there’s anything this community could respond more in, it’s the human-related areas – the marketing and advertising of the importance of data and the importance of making sure the data is there to go back to. There’s no reason to reinvent wheels, but improving them is vital.”