Ethics and Society Overview


hello my name is Bernd Stahl. I a’m professor at De Montfort university which is located in Leicester in the united kingdom and I’m also serving as the leader of the ethics management work package of the human brain project I also represent ethics on Directorate of the human brain project. In this presentation I would like to give you an overview of the ethical issues and societal issues that the human brain project raises. From the outset of the human brain project it was always clear that there were going to be numerous concerns that need to be addressed and thought through. The complexity of those had led to the point where there have been questions about what are those things, what do you do? The sub-project 12 has come up with what we’ve called an overview of the ethics and society issues and in this presentation I’m trying to give you some indication and a graphical help to understand what the various issues are that we do. The first thing or the first set of issues that we deal with is what we could call research ethics issues. These are problems, questions, issues arising from undertaking the research and most of those will be very familiar to those of you who work in this particular type of area. The first one would be human research. The HBP collects data from healthy volunteers but it also makes use of medical data of patient data and it recruits people to to supply the data for the HBP process. Human subject research is well established and people working within these areas tend to be aware. But it’s also a complex issue given that we have a variety of data sources and contributors of data. The next research ethics issue is that of animal research. Again the HP has a variety of tasks that deal with data collected from animals and we need to make sure that we comply with regulation and legislation in this area, in particular the three Rs which are: reduce, replace and refine of animal research. We have research involving human cells which again is regulated quite strictly. So, where cells are being collected or used we need to have rules for doing so and there are processes in place for ensuring that that is the case. And finally there are issues around the involvement of countries from outside the European Union. The European Commission in its ethics guidance is very keen to ensure that those participants are not exploited and there is low risk to the researchers and that there is no research undertaken outside of the EU which would not be permitted within. The EU now in addition to those very well established research ethics issues there are some questions relating to the way research is undertaken in the HPP in general so in the one hand we have the question of research integrity this refers to the way that researchers behave during the research it’s supposed to strengthen the knowledge base by ensuring accountability and openness of research and the human brain project is bound by European principles which are currently best expressed in the earlier research integrity code of conduct in addition there are issues around intellectual property and the HP Kelly produces quite a lot of that and there are questions around who owns what what are the the licenses under which data software designs are made available and there is a potential tension between the requirement from the European Commission that open access is used so that both data and findings are made publicly available and the protection of intellectual properties commercial purposes the htp as a large-scale data project has a variety of issues to do with the data and we have a data governance working group which has developed a data policy manual which attempt to cover the policies that need to be applied to govern the they use the submission and the reuse of data to within the HTTP and and part of and relate to that are questions around personal data so personal data relates to human data so it’s a the flip side of the already mentioned collection of data from human beings where data is identifiable and can lead to leave or can be linked to a natural person it becomes personal data and forth under privacy legislation the htp has to comply with this and it’s very aware of the fact that on the European level we are now looking at the general data protection regulation which is coming in 2018 and that we need to be able to comply the exact as well in addition to those issues that are more or less directly related to doing the research to the process of the research it’s also important to understand that the social and ethical issues are not confined to just the research ethics ID but that the ACP has the potential to raise significant social questions one of those has to do with communities which are meant to use and benefit from the htp so how for example do we get modeling communities from the neuroscience interested in the HPP and how to make sure that they are integrating their work was so hurt this has to do with openness and questions of engagement in addition to these more scientific questions of integrating scientific communities we of course operate as a publicly funded research in a larger societal context and we need to understand and make sure that those are the concerns or other communities for example patient communities are heard and considered appropriately the ATP is set on a course to become a European infrastructure and therefore needs to understand what that means in practice so how the milestones for achieving my infrastructure status are achieved and it can learn from the social studies with regards to how those things can be couldn’t practice the ACP has several sub projects that look into the application of our neuroscience insights into technology and particularly in new robotics and neuromorphic computing and these technologies is very inspired novel technologies made lead to consequences which also worth exploring so that refers on the one hand to industrial production through robotics as well as to the questions of control or understanding of future development based on these new technologies and that we should consider at this point why we’re in the early stages of developing those technologies and finally there is the concern about to use dual use stands for the military use of civilian research and this is something that at the moment the European Commission in particular in the aversion 2020 framework it does not permit so it’s part of our grant agreement that we’ve committed ourselves to ensure that there is no dual use which however at the same time it’s going to be a difficult issue so how do we know what the consequences and the use of the technologies and the inserts are that we have and we are aware that at the moment there are shifting views within the European Commission and the European Union more broadly as to how military research should be addressed as part of that the sp12 group is working on an opinion on you use to clarify the stance of the year HP on the topic we then have even bigger philosophical questions that go beyond the current social affairs and look into specific philosophical questions so the human brain is the seeds of human consciousness which has been a hotly debated topic in philosophy for millennia probably so for us the question is what a criteria of consciousness which is partly an issue for of clinical relevance because if the HUP is supposed to lead to understanding which can help people who have brain related diseases then of course questions around what are disorders what are diseases what are abnormalities of consciousness are important those are part is in scientific questions but they are also to larger vehicles up with questions as they rest on our assumption about what constitutes consciousness a similar issue is raised with the questions of identity so how would we know what makes a human a human in what way can your science help us answer this question and how does on our novel understanding of the human brain witches promoters and helps by the human brain project actually help us identify why why we are the top of the sort of beings that we are in what that means in practice now in this short presentation I did not attempt to give you any answers to any of those issues there’s a lot of discussion around them and we are doing much work within a bit worse but also in collaboration with the other FPS on all of these various issues and each of them certainly worth its own video the the purpose of today’s video was really just to give you an overview of the breadth of activities that they sp12 team undertakes and to give you an opportunity to understand better what the types of activities are replicant engaging if you are interested in this if you want to work with us on a particular issue if you think we’ve missed something that is of important please do not hesitate to contact us and we’re looking forward to hearing from group and working with you in future thank you very much

Leave a Reply

Your email address will not be published. Required fields are marked *