Final Report Summary - NERRI (Neuro-Enhancement: Responsible Research and Innovation)
Executive Summary:
The Neuroenhancement Responsible Research and Innovation (NERRI) project was developed to initiate a Europe-wide societal engagement with the ethical, social, legal and economic aspects of neuroenhancement technologies, and to develop sustainable forms of stakeholder engagement with science and technology in this area. Furthermore, the project seeks to contribute to a normative framework underpinning the governance of neuroenhancement technologies. This report summarizes the main achievements in NERRI’s substantive work packages.
NERRI started with a review of the state-of-the-art in neuroenhancement. The initial phase of the project, Reconnaissance, was based on extensive interviews and reviews of relevant documentation in all the countries of the consortium. It included the classification of enhancement techniques currently available in Europe and its contexts of use; the identification of key stakeholders; the mapping of relevant ethical and moral values at play in European society; and the identification of regulatory frameworks that may have implications for research, innovation and usage of neuroenhancement technologies. Reconnaissance delivered input to subsequent stages and to dissemination, providing solid grounds for the organization of mobilization and mutual learning (MML) activities.
Under work package Societal Dialogue, NERRI conducted more than 60 MML activities across Europe. These exercises brought together researchers, users, companies, health professionals, NGOs, students, the media and the broader public, providing the stage for discussion on the main views, expectations and concerns of European citizens about neuroenhancement. The project thus designed and carried out a range of “laboratories” for exploring options and dimensions for responsible research and innovation (RRI) in neuroenhancement, as well as for developing new formats for multiple-stakeholder engagement and deliberation. Drawing on the insights gained from the MLEs, a survey questionnaire was designed covering a range of issues related to enhancement. The survey was administered to representative samples of 1000 people in each country of the NERRI consortium as well as in the USA.
Analyses, reflections and recommendations derived from the MLEs were developed in work package Governance of Responsible Research and Innovation. The NERRI White Paper condenses and substantiates the main lessons from the project, presented as a set of recommendations for regulation of research and innovation in neuroenhancement. Topics covered by this agenda include the important distinction between restoration and enhancement; implications for research strategies and funding programs; the need for a governance framework; human and fundamental rights as valid guiding principles for regulation of neuroenhancement; and valuable inputs that public engagement can deliver. NERRI expects that development of this agenda should continue after the conclusion of the project. To this end, a self-sustained deliberative public platform was put in place using the online application, Netivist.org which will be linked to the NERRI webpage for two years after the end of the project.
Project Context and Objectives:
The Neuro-Enhancement Responsible Research and Innovation (NERRI) consortium, comprising research institutions and science centres in 11 European countries, was established to promote the societal debate about the arising legal, societal and ethical challenges related with neuroenhancement, and design proposals and recommendations for responsible research and innovation in this field.
The prospect of enhancing the abilities of human beings has spurred intense discussions about its possible scope, as well as the legal, societal and ethical issues this possibility may raise. Over the past decades the applications of biomedical and other technologies to enhance human capacities beyond the therapeutic goals of medicine have become intensely debated issues. In particular, the theme of neuroenhancement, that is, the use of pharmaceuticals, brain stimulation methods, implants or other technologies to improve cognitive, affective or sensory abilities, has emerged as the most salient aspect of this debate. Since early 2000 several ethics advisory bodies, think tanks, technology assessment agencies and other organizations have addressed enhancement, and several European projects were funded to investigate the complex phenomenon of human enhancement. The topic enjoys growing media coverage as well as an increasingly prominent role in popular culture.
At the same time, ever more elderly people suffer from declining mental conditions, which raises the demand for new restorative drugs. The scientific-technical basis of brain research, however, is still limited, and many experts agree that human cognition will remain inscrutable for some time to come. In addition, hopes for a quick fix in brain performance meet serious concerns over health risks. From a societal point of view, utopian visions of futurists are at odds with more traditional value orientations, and fears of increasing pressure on individuals and an already competitive society feature high in the debate.
While the general public understanding remains low, reports on students using prescription drugs to do better in tests caught attention in some countries. However, the prevalence of these practices as well as the “brain-hacker” community experimenting with enhancement drugs and devices are still marginal in Europe.
At the moment there are no regulatory frameworks in Europe focusing on enhancement and it is an open question whether such focus is required or indeed appropriate. Nevertheless, the evaluation of enhancement technologies calls for an integrated approach to science and technology governance; one that ventures beyond considerations of risks and benefits to take into account the broader context of technological innovation, the European set of values (normative anchors) it expresses and the visions of the desirable society it embodies. Responsible research and innovation (RRI) proposes to accomplish this.
A comprehensive public debate about the prospect of neuroenhancement based on substantial expert and stakeholder input is also still lacking. The task of NERRI was therefore twofold: it aimed at facilitating wide, open dialogue about how societies can maximize the benefits and minimize the risks of enhancement technologies; and it fostered discussions about the broader values and considerations which are at stake.
NERRI conducted more than 60 mobilization and mutual learning (MML) activities, i.e. events that brought together researchers, users, intermediaries, professionals, students, the media and the broader public. A variety of formats have been applied from small discussion groups with selected participants to large open fora with hundreds of attendants, from science cafés to activities around exhibitions, from theatre plays to hands-on hackathons. The MML activities produced a wealth of qualitative and explorative information on foreseen futures, risks and possibilities of neuro-enhancement.
To provide additional quantitative information on the distribution in society of points of view around neuroenhancement and based on the experiences from the MLEs, an online survey was designed. The survey was run in all countries of the NERRI consortium and in the USA. In addition, a special survey among patients with neurological disorders was conducted to assess attitudes towards gene editing technology.
Project Results:
1) Ecology of neuroenhancement
First results of NERRI, produced in work package Reconnaissance, include the identification of the components of an “ecology” of neuroenhancement: a) particular technologies; b) sets of normative anchors, c) specific contexts of use, and d) relevant regulatory frameworks. These results underpin the NERRI mobilization and mutual learning activities and are publicly available as deliverables 2.1 through 2.5.
Technologies
Neuroenhancement technologies were classified according to their availability and intended uses. The first aspect describes whether the application in question is already in use and has developed a market as a neuro-enhancement method, or whether it is in an experimental or hypothetical stage. Experimental interventions are not yet widely accessible to patients or the public but the technology is sufficiently developed that its use is studied in humans or administered as experimental treatment. Such technologies may have the potential to develop neuro-enhancing applications. The category of hypothetical technologies includes interventions still farther removed from experimental use but scientific concepts, early research results, or animal models suggest that they might be promising avenues to pursue.
The second aspect distinguishes among technologies according to their intended uses: prevention (intervening with the aim of avoiding the occurrence of some unwanted/impaired future state); therapy (restoring clinically impaired function); optimization (bringing out innate best performance in some particular domain); enhancement (increasing some capacity beyond what individuals are normally capable of); and superability (bringing about some ability or function not present before and that goes beyond maximum human capacity).
European normative anchors
Normative anchors are sets of ethical and moral values that can be considered the building blocks of European society. Normative anchors provide a foundation or backdrop against which neuro-enhancement interventions can be assessed. The manifestations of these anchors in particular instances provide the operationalization, the meaning, and thereby the social and ethical force that creates societal debates.
NERRI partners reviewed relevant documentation in each national context to produce a European map of normative anchors and explore how neuroenhancement technologies might align with them. The normative anchors identified and the questions they raise are as follows (see NERRI Deliverable 2.2):
• Fundamental rights
How does neuro-enhancement challenge individuals’ fundamental human rights to identity, physical and mental integrity, dignity and autonomy? What should be the scope of individual choice about using or refusing neuro-enhancing interventions?
• Promotion of social justice
Does neuro-enhancement threaten the ideal of social justice or is it an instrument to advance this goal?
• Solidarity
Would neuro-enhancement interventions exacerbate competitiveness to the detriment of social solidarity?
• Quality of Life
How will neuro-enhancement affect quality of life?
• Protection of human health
What are acceptable levels of risk for neuro-enhancing interventions?
Contexts of use
Normative anchors need to be placed into the context of different social practices. Deriving ethical, social and legal questions from the technological properties of neuro-enhancers requires us to weigh the relative risks and benefits of any particular intervention. However, this evaluation takes on a different shape in different contexts of application and for different types of use and user. The following contexts have been identified as relevant for possible neuro-enhancement interventions:
• Primary education and secondary education
• University education
• Medical practices
• Scientific research
• Workplaces
• Military activities
• Sports activities
• Law enforcement activities
Regulatory frameworks
Normative anchors, technological properties, and contexts of application are bound together by regulatory frameworks. NERRI mapped two fundamental roles of regulation. On the one hand legal requirements identify the criteria that scientific research of potentially neuroenhancing technologies has to fulfil in terms of safety, efficacy, and so forth. On the other hand regulations pertaining to the production, licensing, access and distribution of neuro-enhancers specify criteria for the manufacture and sale, as well as the legitimate use of different applications in particular contexts.
2) Mobilization and mutual learning activities
Building on the outcomes of Reconnaissance, work package 3 of NERRI, Societal Dialogue, developed the document Guidelines for organising Mutual Learning Exercises, or specific ways of operationalising and organising mobility and mutual learning (MML). These guidelines included instructions regarding methodology, timing and inclusion of multiple voices from various sectors. The guidelines also contained a list of possible tools and experts within the consortium to be consulted by MLE organisers. Finally, assessment criteria for quality assessment of events and a list of ethical issues to be considered were also created. The guidelines are publicly available as deliverable 3.1.
These guidelines were then translated into an online tool for analysing the results of NERRI mutual learning exercises (available in deliverable 3.2) resulting in semi-structured forms with the results of more than 60 MLEs completed across Europe. NERRI was thus used as a deliberative laboratory for exploring options and dimensions of RRI in neuroenhancement, providing valuable information on the main views, expectations and concerns of European citizens, but also for developing and experimenting with new formats for multiple-stakeholder engagement and deliberation.
A publicly available document (deliverable 3.5) evaluates the results of these activities. NERRI is not a research project and the results of the MLEs are qualitative rather than quantitative, explorative rather than analytic, and performative rather than descriptive. The report includes a comprehensive description of the normative and societal issues that have been addressed, of the type of stakeholders that were involved and of the innovative tools for societal dialogue developed by the consortium.
Highlighted here are the main outcomes about participants in the MLEs and issues raised related with classification of users/nonusers of NE, ideas and visions about the usage of NE, potential consequences, different contexts and formats of debate.
Potential users and nonusers of neuroenhancement technologies
Most participants in MLEs can be assigned to one of four groups, which correspond to different generic perceptions: for instance, younger people, safe in their healthy bodies, tend to be more open to such visions while the elderly with ailments pending are more uncertain:
• early adopters open to experimentation;
• cautious pragmatics seeking emergency remedies for stress or work-pressure problems;
• interested sceptics weighing the potential gains against the complexities and risks;
• determined critics fearing an over-competitive, self-centred, technology oriented society.
These groups are not identical but resonate with results from the survey reported below. The general attitudes of the early adopters and cautious pragmatics remind of the so-called “neo-liberal” view, those of the interested sceptics and of the determined critics suggest a more “communitarian” view.
Ideas and visions
The attitudes of these subgroups are expressed in a variety of visions on humanity, on the brain and its functioning as well as on Nature itself:
• Utopian visions consider neuroenhancement to be a token of progress to transcend human limitations and, as such, represent a form of transhumanism.
• Dystopian visions see neuroenhancement as a symbol of an unnatural and unfair society (as sketched out, for example, in “cyberpunk” science-fiction).
• The finding that enhancing a particular capacity of the brain may decrease another supports the idea that the brain is a complex system. This stands against the conception of the brain as working like a linear computer.
• Distinctions are frequently made between “natural” (traditional or plant-based) and “artificial” (chemical or technical) means of enhancement. Likewise, people separate behavioural (education, sleep, training) from technical (pills, devices) means.
Potential consequences
• Frequent doubts about both efficacy and safety raise demands for more research into pharmacological and neurophysiological functions of enhancement drugs and devices and, particularly, into (particularly long-term) side effects.
• A focus on individualist principles (e.g. freedom of choice) as well as on gains and losses for the individual (e.g. health risks vs. benefits like competitive advantages) stands against the emphasis on societal consequences such as the effects of increased inter-personal competition or declining social cohesion.
• A focus on potential benefit makes people take a proactive stance, while emphasis on risks makes them lean towards precaution. To date, it is unclear which side will prevail.
• With brain functions in particular, the distinction between therapy and enhancement, appearing almost self-evident at first sight, gets ever more obscure when scrutinized.
Different contexts
• In education, enhancement technologies are sometimes compared with learning aids such as computers. Others think that a “quick fix” by pills, like doping in sports, runs counter to the mission of building a strong character, to which education should be devoted.
• With regard to minors, parental freedom in deciding on applying neuroenhancement tools on their children stands against the principle of the individual child’s autonomy.
• At work, employees in high responsibility occupations may consider neuroenhancement a benefit; others may feel forced to indulge into a risky practice to get, or to remain, employed or to advance their career.
Formats of debate
Besides results in terms of “content”, NERRI MLEs produced valuable insights in terms of “forms” as well. NERRI as such can be regarded as an experiment comparing the use of traditional formats for debate (lectures, expert panel discussions and the like) with the experiences and results produced by more innovative and interactive forms of deliberation, ranging from world cafés to try-it-yourself events such as hackathons.
NERRI assessed the added value of decision games, drama modules and visuals, for instance; it examined the importance of ambiance, both in terms of historical connotations (legacies and lessons from the past) and in terms of futuristic topologies (future-friendly architecture), and paid attention to the roles that genres of the imagination (cinema, documentaries, literature) can play in opening up public deliberation. Differences between NERRI debates and media enactments were also considered. For instance, in movies NE tends to be framed as a male obsession, whereas during NERRI events the gender dimension is hardly ever addressed by audiences.
3) NERRI survey: the wider public’s points of view
Drawing on the insights gained from the MLEs, a survey questionnaire was designed covering a range of issues related to enhancement. The survey was administered to representative samples of 1000 people in each country of the NERRI consortium as well as in the USA. A report on this survey is available as deliverable 4.3.
As previous work had shown that therapeutic interventions do not raise objections, NERRI looked for characteristics of methods of enhancement and the subjects applying them in education or professional life. A recurring question from the public is the balance of benefits and risks. On this, women seem to take a more precautionary approach.
It is apparent across all countries a striking contrast between two distinct points of view on neuroenhancement. People leaning towards what might be called a “communitarian” view fear it will threaten social cohesion; they think we should be content with our talents and not use artificial means to improve performance. In contrast, those preferring a view to be called “neo-liberal” are excited by the prospect of enhancement and think that, as long as it is safe, it should be available to those who want it.
Such is the variation within countries that differences between countries are dwarfed in comparison. It can be said that on a range of indicators, the publics of Spain, Portugal, the UK and USA are more open to enhancement compared to those in Austria, Denmark and Germany. Asked to imagine being in the shoes of a person who had chosen an enhancement route, between one third of the respondents in the UK and nearly one in two in Denmark said they would definitely not make the same choice. For the rest of the countries, an ambivalent picture emerges rather than a clear majority for or against neuroenhancement.
4) The NERRI White Paper on Neuroenhancement
The NERRI White Paper summarizes the project’s experiences and outcomes and is available to policy makers, stakeholders and the general public (as deliverable 4.5). The Whitepaper condenses and substantiates the main lessons from the project, presented as a set of recommendations for regulation of research and innovation in neuroenhancement, which are highlighted here.
The important distinction between restoration and enhancement
For many people the distinction between medical restoration and enhancement largely determines the acceptability of an intervention, a pharmaceutical drug or a research program. How and where this distinction is drawn is important as there are totally different sets of regulations for therapy and enhancement. Research and development policies mirror this distinction as well. Increasingly difficult to establish, drawing the distinction in a sustainable way might be the outcome of a future discourse between stakeholders and the public.
New clinical trials for the use of already licensed drugs in novel areas are under discussion; drug-marketing strategies seem to be changing in some instances. As commercial strategies have influenced governance towards being more restrictive or permissive in the past, the relevant companies’ interpretation of what a disease is, and which drug serves therapeutic purposes, should be observed as they might influence future governance strategies in this field.
Implications for research strategies and funding programs
Promoting research for curing brain diseases is widely welcome among the public as well as among experts. This is not so for neuroenhancement; nevertheless, some stakeholders may view it as just another aim with high scientific and economic potential. Apart from regulatory hurdles, this view might find ambivalent responses among the European public.
In case neuroenhancement research should be promoted and unknown risks would be involved, rules similar to those for the introduction of new drugs or devices for medical purposes should be followed, including clinical trials.
The need for a governance framework
With new technologies the emergence of risks creates uncertainty and concerns about the lack of governance. MLE participants often demanded that politics should address both safety concerns and societal consequences, while a subset of the participants argued for statutory regulation.
Some experts consider regulatory measures to be premature, unfeasible or inappropriate. Others think regulation is necessary, at least for applications such as electric neuroenhancement devices freely available over the internet and other items that have not been regulated at all so far. If a regulatory approach is chosen, it needs to address whether neuroenhancement should fall under the auspices of medical or consumer law. Depending on the goal, it might fall under both, which would have to be explicitly argued.
Apart from regulatory measures, an emerging governance framework could include voluntary agreements, negotiations between third party groups, education measures, information campaigns etc. All this should be flexible and take into account the different views of stakeholders, experts and the diverse publics within as well as across countries.
Human and fundamental rights
Most medical regulation starts from individual protection rights such as the autonomy of decision-making. In the case of neuroenhancement, however, this may turn out to be insufficient as a point of departure, not least because many perceive the idea of neuroenhancement as having to do with fundamental principles. Therefore, human and fundamental rights such as the right to health and the governments’ obligation to respect, protect and fulfil this right might be guiding as well. Human health, according to the WHO, is a state of complete physical, social and mental wellbeing, not merely the absence of disease or infirmity. As such, the condition of human health might be relevant for non-therapeutic applications also. It would allow addressing long-term social, ethical and economic issues and enhance regulatory consistency.
Public engagement
NERRI has shown that when it comes to future and controversial technologies, about which speculative questions are abundant, public engagement can deliver valuable input. Since controversy will probably stay with us for some time, regarding this area a governance strategy should not be confined to legal considerations or expert deliberations. Rather, it should integrate new forms of public engagement to better understand the needs, points of view and ethical tenets of stakeholders and different publics across Europe.
The NERRI experience, with innovative methods for stimulating dialogue, is a valuable resource for deliberative procedures under the framework of RRI. Participants were able to mutually probe each other’s views without falling into positive or negative hype. From the experience of the MLEs we can identify key factors for enhancing the depth and quality of the debate, facilitating the exchange of arguments in a productive discussion:
• A carefully chosen ambience and place, i.e. the local setting of an event;
• An adequate set of instruments and devices, e.g. games, visuals, do-it-yourself tools to facilitate addressing abstract issues in an easy way to grasp;
• Sufficient interactivity of the participants during the event;
• The use of stimulating genres of the imagination such as theatre, art or cinema.
Potential Impact:
The main goal of the NERRI project was the promotion of a broad societal dialogue about neuro-enhancement, raising the awareness about the scientific development and the social and ethical implications of NE. Achieving this purpose requires a continuing engagement with relevant stakeholders and with the public. NERRI’s dissemination tools and activities were designed with this aim.
Main stakeholders mailing list
The creation of a mailing list of European stakeholders was essential for engaging the stakeholders that the consortium identified. During the reconnaissance phase (WP2) NERRI partners interviewed a substantial number of researchers, philosophers and ethicists, media professionals, science communicators, educators, students, lawyers and law-makers, etc. Many of these contacts could not be compiled and used by the project due to privacy requirements; but some of the institutions included in the analysis agreed to participate in the mobilization and mutual learning activities and therefore shared their contact information allowing the creation of a network of stakeholders. This network will be important for future collaboration in activities related to responsible research and innovation in neuroenhancement, or even RRI in general.
Public mailing list and newsletter
The project also created a public mailing list for people (“stakeholders” or otherwise) interested in neuroenhancement and in NERRI-related activities. The mailing list was used to share information both about the topic of neuroenhancement and the activities related to the project organized by the NERRI consortium, including MLEs and dissemination events.
Subscribers of the mailing list received a monthly newsletter with substantive articles on neuroenhancement, its societal implications, responsible research and innovation in this field, NERRI debates, etc. By the end of the project, the number of subscribers of NERRI newsletter was 429. Subscribers come from 32 different countries, and not all of them are Europeans, even if the majority comes from countries that are directly involved in the project. This result shows the importance of direct engagement activities done by each Project member in its own country:
Country Subcribers
Portugal 85
Spain 68
Italy 66
UK 33
The Netherlands 27
Germany 20
Austria 17
Not Known 17
USA 14
Denmark 12
Iceland 9
Hungary 8
France 7
Brazil 7
Switzerland 5
India 4
Australia 4
Belgium 3
Canada 3
Sweden 2
Colombia 2
Ireland 2
Finland 2
Romania 2
Argentina 1
New Zealand 1
Holland 1
Croatia 1
Japan 1
Luxembourg 1
Mexico 1
Czech Republic 1
Total: 429
Website, Facebook and Twitter
Major efforts were put in the design of a website, Nerri.eu which works both as a repository of sources for neuroenhancement and a collection of materials produced by the consortium. Citizens interested in neuroenhancement are now able to find a wide collection of videos, scientific papers, articles, links, etc. in one place. The site was also designed to present the project, its methods and aims, and descriptions of NERRI related activities. An "Education" section was added with all the educational activities carried out by the different NERRI partners, and the “Deliverables” page with the project’s deliverables. The “Events” page contains a database with MLEs organized by NERRI partners. The NERRI website reached a Google ranking equal to 3 over 10. Totally, the NERRI website had 30.263 sessions, 63.799 visualizations, 21.674 users (1, 54 min), with 72% new visitors and 28% returning visitors.
The consortium created and maintained a Facebook page and a Twitter account. Both social networks had an important role in the engagement of the participants during the MML activities (where the participants were spurred to tweet with the #NERRI hashtag during the event) and for dissemination in general. By the end of the project, NERRI had 810 followers on Facebook and 1056 on Twitter.
Mobilization and mutual learning activities and dissemination events
During the 39 months of the project, NERRI members organized more than 60 mutual learning exercises (MLEs), bringing together different groups of stakeholders (researchers, users, health professionals, educators, students, media, and broad publics). Despite its bottom-up, deliberative nature, NERRI MLEs can also be considered dissemination events.
The venues and publics of MLEs were significantly diverse: universities and an army academy, technology, arts and science museums, pubs and cafés, a national parliament, libraries, a book club, an art gallery, and a planetarium. Number of participants directly engaged in the MLEs varied between 9 and 130, but two public events had 300 and 1200 participants.
Dissemination activities and final events
During most of the project, NERRI partners organized or participated in more strictly dissemination activities. Researchers and science communicators within the project consortium presented the NERRI project in several events on local, national and international levels, usually aiming at the engagement of new stakeholders and experts in the project. These interventions reached from a few dozen participants to several hundred, and took place in conferences, science festivals, science centres, schools and academic contexts, media outlets, etc.
During the last months of the project, NERRI partners organized national and international final events. These events were presented as joint initiatives in the webpage to have a larger dissemination impact. Activities engaged all the partners around Europe and included talks, panel discussions, workshops, art exhibitions, festivals, etc. Final events were often organized in collaboration with partners of the consortium or other institutions, which helped involving a wide public audience and present the results of the project at European level.
The following are just some of the main dissemination activities in different countries and stages of NERRI, illustrating the wide range of venues, publics and issues addressed (see deliverables 5.5; 5.6; 5.7; for a full description of the NERRI final events see D5.9):
• 2013: NERRI partner Universitat Pompeu Fabra created a Spanish Local Committee integrated by representatives of different institutions and associations representing main stakeholders on NE to establish a network of people and organizations that could later be involved in the activities organized by the NERRI project.
• November 2013: partner Experimentarium presented NERRI at Yearly conference of Talents in Science, at the National Centre for Talents in Science, Sorø (Denmark). Around 200 high school and primary school principals attended the event as well as representatives from research institutions, universities and the Ministry of Education.
• November 2013: Agnes Allansdottir (Fondazione Toscana Life Sciences) contextualized the main issues discussed in NERRI with the invited presentation "From genomics to neuroscience: The views of the European public on Responsible Research and Innovation.", at the UNESCO Chair in Bioethics 9th World Conference, Bioethics, Medical Ethics & Health Law: Towards the 21st century.
• March 2014: Salvör Nordal gave two radio interviews about NE and NERRI on National Broadcast Service, Iceland.
• May 2014: Experimentarium presented NERRI at the annual Ecsite (European Network Science Centres & Museums) Conference, The Hague, The Netherlands.
• June 2014: NERRI was presented at ESOF (European Science Open Forum) conference/festival, Copenhagen, Denmark. More than 4000 participants were present in the conference, where the NERRI project and partners were in charge of a scientific session. A 2-day event entitled ‘”Super Me” was also organized for this meeting. The scientific session “The True Unfolding of Man” attracted a full auditorium and engaged audience and the “Super Me” event had more than 1000 visitors.
• June 2014: Ciência Viva and IBMC presented “Responsible research and innovation: analysing mobilization and mutual learning exercises about neuro-enhancement” at the main auditorium (200+ participants) of the 2.º Congresso Nacional de Comunicação de Ciência (2nd National Conference of Science Communication), University of Porto, Portugal.
• July 2014 (and July 2015): Imre Bard, from LSE, participated in the Ethics of Human Enhancement seminar series at Yale Interdisciplinary Centre for Bioethics, New Haven, USA, where NERRI aims and results were discussed.
• June-July 2014: 12 PhD students of the Graduate Program in Areas of Basic and Applied Biology (GABBA, a prestigious Doctoral Program at the University of Porto, Portugal, organized by NERRI partner IBMC) spent one week discussing human and cognitive enhancement with researchers from neuroscience, philosophy, law, psychiatry and psychology.
• Fall 2014: Salvör Nordal included the issue of neuroenhancement in the curriculum of Practical Ethics, an annual course of the Philosophy Department of the University of Iceland, Reykjavík, Iceland.
• November 2014: Talk by Simone Seyringer and Nicole Kronberger (Johannes Kepler University) at 5th International Conference on Future-Oriented Technology Analysis, of the European Commission's Joint Research Centre, Brussels, Belgium (“Dealing with social impacts of future technologies: engaging lay people in debates on neuroenhancement in Austria”).
• November 2014: NERRI talk co-organized by IBMC and Ciência Viva included in the programme of Forum of Future, a series of talks and shows hosted by the City of Porto. Barbara Sahakian (University of Cambridge) reflected on health and ethical implications of smart drug use, while Ian Harrison (University of Reading) talked about the possibilities of brain-machine interfaces with the example of sub-dermal magnetic implants. The event was attended by about 200 people.
• February 2015: Jürgen Hampel and Nicole Kronberger organized two conference sessions (“Experiences with Early Engagement Activities – The Problems of Pro-active Public Engagement”, Part I & II) at the 2nd European Technology Assessment Conference: The Next Horizon of Technology Assessment, Berlin, Germany.
• February 2015: The NERRI project was comprehensively discussed with European Brain Council Members and European Parliament representative at the 1st EBC Industry Board Meeting & EBC Dinner Meeting, Brussels, Belgium.
• February 2015: Anna Meijknecht gave a Guest lecture for research master students of Tilburg University, The Netherlands, focusing on NERRI activities.
• March 2015: “Tinkering with the Brain” Debate at “Prós e Contras”, a very popular debate show at the main public Portuguese TV network in. With renowned neuroscientists, clinicians, surgeons, psychologists, philosophers, writers, etc., focused on the most recent neuroscientific breakthroughs. NERRI team members, such as Alexandre Quintanilha and Teresa Summavielle, were present.
• February-May 2015: “Loucamente”, Pavilhão do Conhecimento – Ciência Viva, Lisbon, Portugal, a series of talks and public debates about mental health, mental well-being, neuroenhancement and their individual, professional and social impacts. The talks were multidisciplinary, with neuroscientists, psychiatrists, psychologists, philosophers, artists, movie makers, musicians, writers, representatives from patient organizations, the army and the police, airplane pilots and teachers
• June-July 2015: Roskilde 2045 – A look into the future, The Roskilde Music Festival, Denmark. The Experimentarium team used the popular Roskilde Music Festival to disseminate the concept of RRI and present NERRI results, specifically focusing on young people’s ethical concerns and their understanding and hopes for the future.
• September 2015: Ciência Viva invited researchers Martin Dinov and Andrew Vladimirov (Imperial College London; London Brain Hackers) for a stand featuring hands on experiments with neuroenhancement devices during the Lisbon Maker Faire. The two researchers discussed neuroenhancement and NERRI issues with several dozens of people (the event itself attracted more than 15 000 participants).
• January 2016: Participation of Elisabeth Hildt (University of Stuttgart) at the conference: "Human Enhancement and the Law – Regulating for the Future", Oxford University, UK.
• February 2016: Dutch and German NERRI partners organized at the Radboud University Nijmegen the public lecture ‘Beware for the boosted brain: questioning neuroenhancement from a scientific, philosophical, ethical and societal perspective’ with two key speakers and a question and answer session; and an interdisciplinary expert workshop with 30 participants including neuroscientists, psychologists, philosophers, social scientists and journalists from different countries.
• February 2016: Meeting in the European Parliament, Brussels, Belgium. NERRI partner EBC organized a breakfast meeting in cooperation with the European Parliament Panel: Scientific Technology Options Assessment to disseminate results of the project. The meeting was attended by 50-60 people, including MEPs, EU officials, scientific community and Brussels based stakeholders.
• February 2016: “Dia C: Melhoramento Cognitivo”, Pavilhão do Conhecimento, Lisbon. Ciência Viva organized a full day event at Pavilhão do Conhecimento, focused on ethical debates about neuroenhacement. After lunch, ~ 30 students from a secondary school near Lisbon discussed in groups to prepare a set of “positions” on neuro-enhancement. At night, in the auditorium of Pavilhão do Conhecimento, a debate on the ethics of neuro-enhancement was attended by more than 200 people. Three short presentations by a philosopher, a psychiatrist and a neuroscientist were followed by a debate with the public that started with the questions/issues raised by the students in the workshop.
• February 2016: Debate “Neuro-Enhancement Policies for the Future”, Central European University, Budapest, Hungary. Panel included participants from the consortium, Agnes Allansdóttir (Toscana Life Sciences), Imre Bárd (LSE), Rui Vieira da Cunha (IBMC), Judit Sándor (CEU) and Márton Varju (CEU), and was attended by CEU faculty and students.
• February 2016: Debate and art event, “A Clockwork Brain: How can art deepen the social discourse of science?”, Reykjavík Art Museum, Iceland. The Centre for Ethics hosted a panel discussion with several NERRI partners: George Gaskell (LSE), Judit Sándor (CEU) and Agnes Allansdóttir (TLS).
• February 2016: “Neuroart: Debate and Art Exhibition”, La Sapienza University, Rome. SISSA in collaboration with TLS and La Sapienza University organized a debate with neuroscientists, biologists, psychologists, scientific journalists and historians of philosophy from CNR, La Sapienza University, AgliotiLAB and Fondazione Giannino Bassetti.
• March 2016, “Neuroenhancement: Mirage or Miracle”, The Stag’s Head, London. Event organised by the London School of Economics’ team in collaboration with Jugular Productions, a company specialising in public engagement with science/art/ technology topics. The event brought together multiple perspectives around neuroenhancement. The event featured very short introductory position statements from the invited panellists in response to the question “Neuroenhancement: Mirage or Miracle?” A moderated discussion followed, chaired by Dr Shama Rahman, a neuroscientist and public engagement professional.
• May 2016: Illina Singh (Oxford University) made a presentation to the Board of the European Brain Council, in Brussels, Belgium, about NERRI public opinion survey across partner countries.
Publications
Publication of academic theses and journal papers were not NERRI’s main objective. Nonetheless, NERRI outcomes were also presented and analysed in academic papers, proceedings of conferences and books. NERRI partners wrote four articles on the main results and dimensions of the project: “Tools for Mutual Learning Exercises”; “Debating Neuro-enhancement”; “NERRI societal debate”; “Neuroenhancement, Responsible Research and Innovation: Challenges for Deliberative Democracy”; “Legal Implications and Considerations of Non-therapeutic Use of Neuroenhancing Pharmaceuticals and Devices”. These papers, submitted as deliverable 4.4 (restricted access), are being prepared for publication in reputable, peer-reviewed journals.
Furthermore, issues and debates related with neuroenhancement were reported in publications by partners of the project or external authors, including online publications, newspapers, magazines, and brochures. Below is a sample of the published or in print articles:
• March 2014: “Potenziamento cognitivo, la realtà del cervello aumentato”, Wired (italian edition), http://www.wired.it/scienza/biotech/2014/03/13/potenziamento-cognitivo-neuroenhancement/
• June 2014: NERRI was documented in a major Danish publication, Politiken, in an article that also presented the two NERRI events during the European Science Open Forum, Copenhagen.
• October 2014: Jóhannes Dagsson and Salvör Nordal, “Neuro-enhancement of healthy individuals. A dialogue with the public”, Skemman, published in Icelandic http://skemman.is/item/view/1946/19974;jsessionid=7325DFB3B36939E2795AD4FA8DD9D30F.
• Autumn 2014: “NERRI project: opening much-needed dialogue on neuroenhancement”, EBC NEWS, (http://www.braincouncil.eu/library/ebc-communication/ebc-news/)
• March 2015: “Inside a Brain Hackathon: Hacking Brain Waves to Extend the Mind”, article covering a MLE organized by NERRI partner LSE, http://motherboard.vice.com/read/brain-hackathon-hacking-brainwaves-to-extend-the-mind
• September 2015: Teresa Summavielle, “Comprimido para a esperteza?”, article addressing the use of smart drugs, focus on possible positive effects and expectable long-term effects, published in Portuguese, http://visao.sapo.pt/actualidade/sociedade/comprimido-para-a-esperteza=f828829.
• 2015: Hub Zwart, “Cognitive enhancement”, Handbook Posthumanism in Film and Television, Eds. Michael Hauskeller, Thomas D. Philbeck, Curtis Carbonell Palgrave.
• May 2016: “Smart Drugs, drogas inteligentes? O que queres saber sobre potenciadores cognitivos que outros sítios não te dizem”, booklet on smart drugs and the dilemas of neuroenhancement, aimed at secondary school publics, published by Portuguese partners IBMC and Ciência Viva (English version forthcoming).
• Forthcoming: Ronja Schütz, Elisabeth Hildt, Jürgen Hampel, edited book “Neuroenhancement: Interdisziplinäre Perspektiven auf eine Kontroverse”.
• Forthcoming: Jürgen Hampel and Nicole Kronberger, “The Interface between the Public and Science and Technology”; and Ronja Schütz, Christian Hofmaier, Núria Saladié, Gema Revuelta and Elisabeth Hildt, “Talking about what? Early Engagement Activities in the Context of Neuro-Enhancement Technologies”, two papers from NERRI included in The Next Horizon of Technology Assessment: PACITA Proceedings.
Deliberative stakeholder platform
The main expected impact of the project was stated in the NERRI White Paper on Neuro-Enhancement in Europe that culminates WP4, Governance of Responsible Research and Innovation. The lessons and recommendations formulated in the White Paper will be one of the main legacies of NERRI. But the project expects that development of this agenda should continue after the conclusion of the project. To this end, a self-sustained deliberative stakeholder and public platform was put in place using the online application, Netivist.org which will be linked to the NERRI webpage for two years after the end of the project.
Netivist is an open online forum that aims at stimulating participation and civic engagement, and its most popular debates engage more than 10 000 participants. NERRI will maintain a section on the Netivist page, allowing the public to be engaged in NERRI deliberations after the project’s conclusion. The section will take the form of a catchy title, a lead-in, an intro picture, a couple of paragraphs of text introducing a specific dilemma around neuroenhancement and questions for voting.
List of Websites:
Project’s website: nerri.eu. Project coordinator: Ana Noronha | anoronha@cienciaviva.pt
The Neuroenhancement Responsible Research and Innovation (NERRI) project was developed to initiate a Europe-wide societal engagement with the ethical, social, legal and economic aspects of neuroenhancement technologies, and to develop sustainable forms of stakeholder engagement with science and technology in this area. Furthermore, the project seeks to contribute to a normative framework underpinning the governance of neuroenhancement technologies. This report summarizes the main achievements in NERRI’s substantive work packages.
NERRI started with a review of the state-of-the-art in neuroenhancement. The initial phase of the project, Reconnaissance, was based on extensive interviews and reviews of relevant documentation in all the countries of the consortium. It included the classification of enhancement techniques currently available in Europe and its contexts of use; the identification of key stakeholders; the mapping of relevant ethical and moral values at play in European society; and the identification of regulatory frameworks that may have implications for research, innovation and usage of neuroenhancement technologies. Reconnaissance delivered input to subsequent stages and to dissemination, providing solid grounds for the organization of mobilization and mutual learning (MML) activities.
Under work package Societal Dialogue, NERRI conducted more than 60 MML activities across Europe. These exercises brought together researchers, users, companies, health professionals, NGOs, students, the media and the broader public, providing the stage for discussion on the main views, expectations and concerns of European citizens about neuroenhancement. The project thus designed and carried out a range of “laboratories” for exploring options and dimensions for responsible research and innovation (RRI) in neuroenhancement, as well as for developing new formats for multiple-stakeholder engagement and deliberation. Drawing on the insights gained from the MLEs, a survey questionnaire was designed covering a range of issues related to enhancement. The survey was administered to representative samples of 1000 people in each country of the NERRI consortium as well as in the USA.
Analyses, reflections and recommendations derived from the MLEs were developed in work package Governance of Responsible Research and Innovation. The NERRI White Paper condenses and substantiates the main lessons from the project, presented as a set of recommendations for regulation of research and innovation in neuroenhancement. Topics covered by this agenda include the important distinction between restoration and enhancement; implications for research strategies and funding programs; the need for a governance framework; human and fundamental rights as valid guiding principles for regulation of neuroenhancement; and valuable inputs that public engagement can deliver. NERRI expects that development of this agenda should continue after the conclusion of the project. To this end, a self-sustained deliberative public platform was put in place using the online application, Netivist.org which will be linked to the NERRI webpage for two years after the end of the project.
Project Context and Objectives:
The Neuro-Enhancement Responsible Research and Innovation (NERRI) consortium, comprising research institutions and science centres in 11 European countries, was established to promote the societal debate about the arising legal, societal and ethical challenges related with neuroenhancement, and design proposals and recommendations for responsible research and innovation in this field.
The prospect of enhancing the abilities of human beings has spurred intense discussions about its possible scope, as well as the legal, societal and ethical issues this possibility may raise. Over the past decades the applications of biomedical and other technologies to enhance human capacities beyond the therapeutic goals of medicine have become intensely debated issues. In particular, the theme of neuroenhancement, that is, the use of pharmaceuticals, brain stimulation methods, implants or other technologies to improve cognitive, affective or sensory abilities, has emerged as the most salient aspect of this debate. Since early 2000 several ethics advisory bodies, think tanks, technology assessment agencies and other organizations have addressed enhancement, and several European projects were funded to investigate the complex phenomenon of human enhancement. The topic enjoys growing media coverage as well as an increasingly prominent role in popular culture.
At the same time, ever more elderly people suffer from declining mental conditions, which raises the demand for new restorative drugs. The scientific-technical basis of brain research, however, is still limited, and many experts agree that human cognition will remain inscrutable for some time to come. In addition, hopes for a quick fix in brain performance meet serious concerns over health risks. From a societal point of view, utopian visions of futurists are at odds with more traditional value orientations, and fears of increasing pressure on individuals and an already competitive society feature high in the debate.
While the general public understanding remains low, reports on students using prescription drugs to do better in tests caught attention in some countries. However, the prevalence of these practices as well as the “brain-hacker” community experimenting with enhancement drugs and devices are still marginal in Europe.
At the moment there are no regulatory frameworks in Europe focusing on enhancement and it is an open question whether such focus is required or indeed appropriate. Nevertheless, the evaluation of enhancement technologies calls for an integrated approach to science and technology governance; one that ventures beyond considerations of risks and benefits to take into account the broader context of technological innovation, the European set of values (normative anchors) it expresses and the visions of the desirable society it embodies. Responsible research and innovation (RRI) proposes to accomplish this.
A comprehensive public debate about the prospect of neuroenhancement based on substantial expert and stakeholder input is also still lacking. The task of NERRI was therefore twofold: it aimed at facilitating wide, open dialogue about how societies can maximize the benefits and minimize the risks of enhancement technologies; and it fostered discussions about the broader values and considerations which are at stake.
NERRI conducted more than 60 mobilization and mutual learning (MML) activities, i.e. events that brought together researchers, users, intermediaries, professionals, students, the media and the broader public. A variety of formats have been applied from small discussion groups with selected participants to large open fora with hundreds of attendants, from science cafés to activities around exhibitions, from theatre plays to hands-on hackathons. The MML activities produced a wealth of qualitative and explorative information on foreseen futures, risks and possibilities of neuro-enhancement.
To provide additional quantitative information on the distribution in society of points of view around neuroenhancement and based on the experiences from the MLEs, an online survey was designed. The survey was run in all countries of the NERRI consortium and in the USA. In addition, a special survey among patients with neurological disorders was conducted to assess attitudes towards gene editing technology.
Project Results:
1) Ecology of neuroenhancement
First results of NERRI, produced in work package Reconnaissance, include the identification of the components of an “ecology” of neuroenhancement: a) particular technologies; b) sets of normative anchors, c) specific contexts of use, and d) relevant regulatory frameworks. These results underpin the NERRI mobilization and mutual learning activities and are publicly available as deliverables 2.1 through 2.5.
Technologies
Neuroenhancement technologies were classified according to their availability and intended uses. The first aspect describes whether the application in question is already in use and has developed a market as a neuro-enhancement method, or whether it is in an experimental or hypothetical stage. Experimental interventions are not yet widely accessible to patients or the public but the technology is sufficiently developed that its use is studied in humans or administered as experimental treatment. Such technologies may have the potential to develop neuro-enhancing applications. The category of hypothetical technologies includes interventions still farther removed from experimental use but scientific concepts, early research results, or animal models suggest that they might be promising avenues to pursue.
The second aspect distinguishes among technologies according to their intended uses: prevention (intervening with the aim of avoiding the occurrence of some unwanted/impaired future state); therapy (restoring clinically impaired function); optimization (bringing out innate best performance in some particular domain); enhancement (increasing some capacity beyond what individuals are normally capable of); and superability (bringing about some ability or function not present before and that goes beyond maximum human capacity).
European normative anchors
Normative anchors are sets of ethical and moral values that can be considered the building blocks of European society. Normative anchors provide a foundation or backdrop against which neuro-enhancement interventions can be assessed. The manifestations of these anchors in particular instances provide the operationalization, the meaning, and thereby the social and ethical force that creates societal debates.
NERRI partners reviewed relevant documentation in each national context to produce a European map of normative anchors and explore how neuroenhancement technologies might align with them. The normative anchors identified and the questions they raise are as follows (see NERRI Deliverable 2.2):
• Fundamental rights
How does neuro-enhancement challenge individuals’ fundamental human rights to identity, physical and mental integrity, dignity and autonomy? What should be the scope of individual choice about using or refusing neuro-enhancing interventions?
• Promotion of social justice
Does neuro-enhancement threaten the ideal of social justice or is it an instrument to advance this goal?
• Solidarity
Would neuro-enhancement interventions exacerbate competitiveness to the detriment of social solidarity?
• Quality of Life
How will neuro-enhancement affect quality of life?
• Protection of human health
What are acceptable levels of risk for neuro-enhancing interventions?
Contexts of use
Normative anchors need to be placed into the context of different social practices. Deriving ethical, social and legal questions from the technological properties of neuro-enhancers requires us to weigh the relative risks and benefits of any particular intervention. However, this evaluation takes on a different shape in different contexts of application and for different types of use and user. The following contexts have been identified as relevant for possible neuro-enhancement interventions:
• Primary education and secondary education
• University education
• Medical practices
• Scientific research
• Workplaces
• Military activities
• Sports activities
• Law enforcement activities
Regulatory frameworks
Normative anchors, technological properties, and contexts of application are bound together by regulatory frameworks. NERRI mapped two fundamental roles of regulation. On the one hand legal requirements identify the criteria that scientific research of potentially neuroenhancing technologies has to fulfil in terms of safety, efficacy, and so forth. On the other hand regulations pertaining to the production, licensing, access and distribution of neuro-enhancers specify criteria for the manufacture and sale, as well as the legitimate use of different applications in particular contexts.
2) Mobilization and mutual learning activities
Building on the outcomes of Reconnaissance, work package 3 of NERRI, Societal Dialogue, developed the document Guidelines for organising Mutual Learning Exercises, or specific ways of operationalising and organising mobility and mutual learning (MML). These guidelines included instructions regarding methodology, timing and inclusion of multiple voices from various sectors. The guidelines also contained a list of possible tools and experts within the consortium to be consulted by MLE organisers. Finally, assessment criteria for quality assessment of events and a list of ethical issues to be considered were also created. The guidelines are publicly available as deliverable 3.1.
These guidelines were then translated into an online tool for analysing the results of NERRI mutual learning exercises (available in deliverable 3.2) resulting in semi-structured forms with the results of more than 60 MLEs completed across Europe. NERRI was thus used as a deliberative laboratory for exploring options and dimensions of RRI in neuroenhancement, providing valuable information on the main views, expectations and concerns of European citizens, but also for developing and experimenting with new formats for multiple-stakeholder engagement and deliberation.
A publicly available document (deliverable 3.5) evaluates the results of these activities. NERRI is not a research project and the results of the MLEs are qualitative rather than quantitative, explorative rather than analytic, and performative rather than descriptive. The report includes a comprehensive description of the normative and societal issues that have been addressed, of the type of stakeholders that were involved and of the innovative tools for societal dialogue developed by the consortium.
Highlighted here are the main outcomes about participants in the MLEs and issues raised related with classification of users/nonusers of NE, ideas and visions about the usage of NE, potential consequences, different contexts and formats of debate.
Potential users and nonusers of neuroenhancement technologies
Most participants in MLEs can be assigned to one of four groups, which correspond to different generic perceptions: for instance, younger people, safe in their healthy bodies, tend to be more open to such visions while the elderly with ailments pending are more uncertain:
• early adopters open to experimentation;
• cautious pragmatics seeking emergency remedies for stress or work-pressure problems;
• interested sceptics weighing the potential gains against the complexities and risks;
• determined critics fearing an over-competitive, self-centred, technology oriented society.
These groups are not identical but resonate with results from the survey reported below. The general attitudes of the early adopters and cautious pragmatics remind of the so-called “neo-liberal” view, those of the interested sceptics and of the determined critics suggest a more “communitarian” view.
Ideas and visions
The attitudes of these subgroups are expressed in a variety of visions on humanity, on the brain and its functioning as well as on Nature itself:
• Utopian visions consider neuroenhancement to be a token of progress to transcend human limitations and, as such, represent a form of transhumanism.
• Dystopian visions see neuroenhancement as a symbol of an unnatural and unfair society (as sketched out, for example, in “cyberpunk” science-fiction).
• The finding that enhancing a particular capacity of the brain may decrease another supports the idea that the brain is a complex system. This stands against the conception of the brain as working like a linear computer.
• Distinctions are frequently made between “natural” (traditional or plant-based) and “artificial” (chemical or technical) means of enhancement. Likewise, people separate behavioural (education, sleep, training) from technical (pills, devices) means.
Potential consequences
• Frequent doubts about both efficacy and safety raise demands for more research into pharmacological and neurophysiological functions of enhancement drugs and devices and, particularly, into (particularly long-term) side effects.
• A focus on individualist principles (e.g. freedom of choice) as well as on gains and losses for the individual (e.g. health risks vs. benefits like competitive advantages) stands against the emphasis on societal consequences such as the effects of increased inter-personal competition or declining social cohesion.
• A focus on potential benefit makes people take a proactive stance, while emphasis on risks makes them lean towards precaution. To date, it is unclear which side will prevail.
• With brain functions in particular, the distinction between therapy and enhancement, appearing almost self-evident at first sight, gets ever more obscure when scrutinized.
Different contexts
• In education, enhancement technologies are sometimes compared with learning aids such as computers. Others think that a “quick fix” by pills, like doping in sports, runs counter to the mission of building a strong character, to which education should be devoted.
• With regard to minors, parental freedom in deciding on applying neuroenhancement tools on their children stands against the principle of the individual child’s autonomy.
• At work, employees in high responsibility occupations may consider neuroenhancement a benefit; others may feel forced to indulge into a risky practice to get, or to remain, employed or to advance their career.
Formats of debate
Besides results in terms of “content”, NERRI MLEs produced valuable insights in terms of “forms” as well. NERRI as such can be regarded as an experiment comparing the use of traditional formats for debate (lectures, expert panel discussions and the like) with the experiences and results produced by more innovative and interactive forms of deliberation, ranging from world cafés to try-it-yourself events such as hackathons.
NERRI assessed the added value of decision games, drama modules and visuals, for instance; it examined the importance of ambiance, both in terms of historical connotations (legacies and lessons from the past) and in terms of futuristic topologies (future-friendly architecture), and paid attention to the roles that genres of the imagination (cinema, documentaries, literature) can play in opening up public deliberation. Differences between NERRI debates and media enactments were also considered. For instance, in movies NE tends to be framed as a male obsession, whereas during NERRI events the gender dimension is hardly ever addressed by audiences.
3) NERRI survey: the wider public’s points of view
Drawing on the insights gained from the MLEs, a survey questionnaire was designed covering a range of issues related to enhancement. The survey was administered to representative samples of 1000 people in each country of the NERRI consortium as well as in the USA. A report on this survey is available as deliverable 4.3.
As previous work had shown that therapeutic interventions do not raise objections, NERRI looked for characteristics of methods of enhancement and the subjects applying them in education or professional life. A recurring question from the public is the balance of benefits and risks. On this, women seem to take a more precautionary approach.
It is apparent across all countries a striking contrast between two distinct points of view on neuroenhancement. People leaning towards what might be called a “communitarian” view fear it will threaten social cohesion; they think we should be content with our talents and not use artificial means to improve performance. In contrast, those preferring a view to be called “neo-liberal” are excited by the prospect of enhancement and think that, as long as it is safe, it should be available to those who want it.
Such is the variation within countries that differences between countries are dwarfed in comparison. It can be said that on a range of indicators, the publics of Spain, Portugal, the UK and USA are more open to enhancement compared to those in Austria, Denmark and Germany. Asked to imagine being in the shoes of a person who had chosen an enhancement route, between one third of the respondents in the UK and nearly one in two in Denmark said they would definitely not make the same choice. For the rest of the countries, an ambivalent picture emerges rather than a clear majority for or against neuroenhancement.
4) The NERRI White Paper on Neuroenhancement
The NERRI White Paper summarizes the project’s experiences and outcomes and is available to policy makers, stakeholders and the general public (as deliverable 4.5). The Whitepaper condenses and substantiates the main lessons from the project, presented as a set of recommendations for regulation of research and innovation in neuroenhancement, which are highlighted here.
The important distinction between restoration and enhancement
For many people the distinction between medical restoration and enhancement largely determines the acceptability of an intervention, a pharmaceutical drug or a research program. How and where this distinction is drawn is important as there are totally different sets of regulations for therapy and enhancement. Research and development policies mirror this distinction as well. Increasingly difficult to establish, drawing the distinction in a sustainable way might be the outcome of a future discourse between stakeholders and the public.
New clinical trials for the use of already licensed drugs in novel areas are under discussion; drug-marketing strategies seem to be changing in some instances. As commercial strategies have influenced governance towards being more restrictive or permissive in the past, the relevant companies’ interpretation of what a disease is, and which drug serves therapeutic purposes, should be observed as they might influence future governance strategies in this field.
Implications for research strategies and funding programs
Promoting research for curing brain diseases is widely welcome among the public as well as among experts. This is not so for neuroenhancement; nevertheless, some stakeholders may view it as just another aim with high scientific and economic potential. Apart from regulatory hurdles, this view might find ambivalent responses among the European public.
In case neuroenhancement research should be promoted and unknown risks would be involved, rules similar to those for the introduction of new drugs or devices for medical purposes should be followed, including clinical trials.
The need for a governance framework
With new technologies the emergence of risks creates uncertainty and concerns about the lack of governance. MLE participants often demanded that politics should address both safety concerns and societal consequences, while a subset of the participants argued for statutory regulation.
Some experts consider regulatory measures to be premature, unfeasible or inappropriate. Others think regulation is necessary, at least for applications such as electric neuroenhancement devices freely available over the internet and other items that have not been regulated at all so far. If a regulatory approach is chosen, it needs to address whether neuroenhancement should fall under the auspices of medical or consumer law. Depending on the goal, it might fall under both, which would have to be explicitly argued.
Apart from regulatory measures, an emerging governance framework could include voluntary agreements, negotiations between third party groups, education measures, information campaigns etc. All this should be flexible and take into account the different views of stakeholders, experts and the diverse publics within as well as across countries.
Human and fundamental rights
Most medical regulation starts from individual protection rights such as the autonomy of decision-making. In the case of neuroenhancement, however, this may turn out to be insufficient as a point of departure, not least because many perceive the idea of neuroenhancement as having to do with fundamental principles. Therefore, human and fundamental rights such as the right to health and the governments’ obligation to respect, protect and fulfil this right might be guiding as well. Human health, according to the WHO, is a state of complete physical, social and mental wellbeing, not merely the absence of disease or infirmity. As such, the condition of human health might be relevant for non-therapeutic applications also. It would allow addressing long-term social, ethical and economic issues and enhance regulatory consistency.
Public engagement
NERRI has shown that when it comes to future and controversial technologies, about which speculative questions are abundant, public engagement can deliver valuable input. Since controversy will probably stay with us for some time, regarding this area a governance strategy should not be confined to legal considerations or expert deliberations. Rather, it should integrate new forms of public engagement to better understand the needs, points of view and ethical tenets of stakeholders and different publics across Europe.
The NERRI experience, with innovative methods for stimulating dialogue, is a valuable resource for deliberative procedures under the framework of RRI. Participants were able to mutually probe each other’s views without falling into positive or negative hype. From the experience of the MLEs we can identify key factors for enhancing the depth and quality of the debate, facilitating the exchange of arguments in a productive discussion:
• A carefully chosen ambience and place, i.e. the local setting of an event;
• An adequate set of instruments and devices, e.g. games, visuals, do-it-yourself tools to facilitate addressing abstract issues in an easy way to grasp;
• Sufficient interactivity of the participants during the event;
• The use of stimulating genres of the imagination such as theatre, art or cinema.
Potential Impact:
The main goal of the NERRI project was the promotion of a broad societal dialogue about neuro-enhancement, raising the awareness about the scientific development and the social and ethical implications of NE. Achieving this purpose requires a continuing engagement with relevant stakeholders and with the public. NERRI’s dissemination tools and activities were designed with this aim.
Main stakeholders mailing list
The creation of a mailing list of European stakeholders was essential for engaging the stakeholders that the consortium identified. During the reconnaissance phase (WP2) NERRI partners interviewed a substantial number of researchers, philosophers and ethicists, media professionals, science communicators, educators, students, lawyers and law-makers, etc. Many of these contacts could not be compiled and used by the project due to privacy requirements; but some of the institutions included in the analysis agreed to participate in the mobilization and mutual learning activities and therefore shared their contact information allowing the creation of a network of stakeholders. This network will be important for future collaboration in activities related to responsible research and innovation in neuroenhancement, or even RRI in general.
Public mailing list and newsletter
The project also created a public mailing list for people (“stakeholders” or otherwise) interested in neuroenhancement and in NERRI-related activities. The mailing list was used to share information both about the topic of neuroenhancement and the activities related to the project organized by the NERRI consortium, including MLEs and dissemination events.
Subscribers of the mailing list received a monthly newsletter with substantive articles on neuroenhancement, its societal implications, responsible research and innovation in this field, NERRI debates, etc. By the end of the project, the number of subscribers of NERRI newsletter was 429. Subscribers come from 32 different countries, and not all of them are Europeans, even if the majority comes from countries that are directly involved in the project. This result shows the importance of direct engagement activities done by each Project member in its own country:
Country Subcribers
Portugal 85
Spain 68
Italy 66
UK 33
The Netherlands 27
Germany 20
Austria 17
Not Known 17
USA 14
Denmark 12
Iceland 9
Hungary 8
France 7
Brazil 7
Switzerland 5
India 4
Australia 4
Belgium 3
Canada 3
Sweden 2
Colombia 2
Ireland 2
Finland 2
Romania 2
Argentina 1
New Zealand 1
Holland 1
Croatia 1
Japan 1
Luxembourg 1
Mexico 1
Czech Republic 1
Total: 429
Website, Facebook and Twitter
Major efforts were put in the design of a website, Nerri.eu which works both as a repository of sources for neuroenhancement and a collection of materials produced by the consortium. Citizens interested in neuroenhancement are now able to find a wide collection of videos, scientific papers, articles, links, etc. in one place. The site was also designed to present the project, its methods and aims, and descriptions of NERRI related activities. An "Education" section was added with all the educational activities carried out by the different NERRI partners, and the “Deliverables” page with the project’s deliverables. The “Events” page contains a database with MLEs organized by NERRI partners. The NERRI website reached a Google ranking equal to 3 over 10. Totally, the NERRI website had 30.263 sessions, 63.799 visualizations, 21.674 users (1, 54 min), with 72% new visitors and 28% returning visitors.
The consortium created and maintained a Facebook page and a Twitter account. Both social networks had an important role in the engagement of the participants during the MML activities (where the participants were spurred to tweet with the #NERRI hashtag during the event) and for dissemination in general. By the end of the project, NERRI had 810 followers on Facebook and 1056 on Twitter.
Mobilization and mutual learning activities and dissemination events
During the 39 months of the project, NERRI members organized more than 60 mutual learning exercises (MLEs), bringing together different groups of stakeholders (researchers, users, health professionals, educators, students, media, and broad publics). Despite its bottom-up, deliberative nature, NERRI MLEs can also be considered dissemination events.
The venues and publics of MLEs were significantly diverse: universities and an army academy, technology, arts and science museums, pubs and cafés, a national parliament, libraries, a book club, an art gallery, and a planetarium. Number of participants directly engaged in the MLEs varied between 9 and 130, but two public events had 300 and 1200 participants.
Dissemination activities and final events
During most of the project, NERRI partners organized or participated in more strictly dissemination activities. Researchers and science communicators within the project consortium presented the NERRI project in several events on local, national and international levels, usually aiming at the engagement of new stakeholders and experts in the project. These interventions reached from a few dozen participants to several hundred, and took place in conferences, science festivals, science centres, schools and academic contexts, media outlets, etc.
During the last months of the project, NERRI partners organized national and international final events. These events were presented as joint initiatives in the webpage to have a larger dissemination impact. Activities engaged all the partners around Europe and included talks, panel discussions, workshops, art exhibitions, festivals, etc. Final events were often organized in collaboration with partners of the consortium or other institutions, which helped involving a wide public audience and present the results of the project at European level.
The following are just some of the main dissemination activities in different countries and stages of NERRI, illustrating the wide range of venues, publics and issues addressed (see deliverables 5.5; 5.6; 5.7; for a full description of the NERRI final events see D5.9):
• 2013: NERRI partner Universitat Pompeu Fabra created a Spanish Local Committee integrated by representatives of different institutions and associations representing main stakeholders on NE to establish a network of people and organizations that could later be involved in the activities organized by the NERRI project.
• November 2013: partner Experimentarium presented NERRI at Yearly conference of Talents in Science, at the National Centre for Talents in Science, Sorø (Denmark). Around 200 high school and primary school principals attended the event as well as representatives from research institutions, universities and the Ministry of Education.
• November 2013: Agnes Allansdottir (Fondazione Toscana Life Sciences) contextualized the main issues discussed in NERRI with the invited presentation "From genomics to neuroscience: The views of the European public on Responsible Research and Innovation.", at the UNESCO Chair in Bioethics 9th World Conference, Bioethics, Medical Ethics & Health Law: Towards the 21st century.
• March 2014: Salvör Nordal gave two radio interviews about NE and NERRI on National Broadcast Service, Iceland.
• May 2014: Experimentarium presented NERRI at the annual Ecsite (European Network Science Centres & Museums) Conference, The Hague, The Netherlands.
• June 2014: NERRI was presented at ESOF (European Science Open Forum) conference/festival, Copenhagen, Denmark. More than 4000 participants were present in the conference, where the NERRI project and partners were in charge of a scientific session. A 2-day event entitled ‘”Super Me” was also organized for this meeting. The scientific session “The True Unfolding of Man” attracted a full auditorium and engaged audience and the “Super Me” event had more than 1000 visitors.
• June 2014: Ciência Viva and IBMC presented “Responsible research and innovation: analysing mobilization and mutual learning exercises about neuro-enhancement” at the main auditorium (200+ participants) of the 2.º Congresso Nacional de Comunicação de Ciência (2nd National Conference of Science Communication), University of Porto, Portugal.
• July 2014 (and July 2015): Imre Bard, from LSE, participated in the Ethics of Human Enhancement seminar series at Yale Interdisciplinary Centre for Bioethics, New Haven, USA, where NERRI aims and results were discussed.
• June-July 2014: 12 PhD students of the Graduate Program in Areas of Basic and Applied Biology (GABBA, a prestigious Doctoral Program at the University of Porto, Portugal, organized by NERRI partner IBMC) spent one week discussing human and cognitive enhancement with researchers from neuroscience, philosophy, law, psychiatry and psychology.
• Fall 2014: Salvör Nordal included the issue of neuroenhancement in the curriculum of Practical Ethics, an annual course of the Philosophy Department of the University of Iceland, Reykjavík, Iceland.
• November 2014: Talk by Simone Seyringer and Nicole Kronberger (Johannes Kepler University) at 5th International Conference on Future-Oriented Technology Analysis, of the European Commission's Joint Research Centre, Brussels, Belgium (“Dealing with social impacts of future technologies: engaging lay people in debates on neuroenhancement in Austria”).
• November 2014: NERRI talk co-organized by IBMC and Ciência Viva included in the programme of Forum of Future, a series of talks and shows hosted by the City of Porto. Barbara Sahakian (University of Cambridge) reflected on health and ethical implications of smart drug use, while Ian Harrison (University of Reading) talked about the possibilities of brain-machine interfaces with the example of sub-dermal magnetic implants. The event was attended by about 200 people.
• February 2015: Jürgen Hampel and Nicole Kronberger organized two conference sessions (“Experiences with Early Engagement Activities – The Problems of Pro-active Public Engagement”, Part I & II) at the 2nd European Technology Assessment Conference: The Next Horizon of Technology Assessment, Berlin, Germany.
• February 2015: The NERRI project was comprehensively discussed with European Brain Council Members and European Parliament representative at the 1st EBC Industry Board Meeting & EBC Dinner Meeting, Brussels, Belgium.
• February 2015: Anna Meijknecht gave a Guest lecture for research master students of Tilburg University, The Netherlands, focusing on NERRI activities.
• March 2015: “Tinkering with the Brain” Debate at “Prós e Contras”, a very popular debate show at the main public Portuguese TV network in. With renowned neuroscientists, clinicians, surgeons, psychologists, philosophers, writers, etc., focused on the most recent neuroscientific breakthroughs. NERRI team members, such as Alexandre Quintanilha and Teresa Summavielle, were present.
• February-May 2015: “Loucamente”, Pavilhão do Conhecimento – Ciência Viva, Lisbon, Portugal, a series of talks and public debates about mental health, mental well-being, neuroenhancement and their individual, professional and social impacts. The talks were multidisciplinary, with neuroscientists, psychiatrists, psychologists, philosophers, artists, movie makers, musicians, writers, representatives from patient organizations, the army and the police, airplane pilots and teachers
• June-July 2015: Roskilde 2045 – A look into the future, The Roskilde Music Festival, Denmark. The Experimentarium team used the popular Roskilde Music Festival to disseminate the concept of RRI and present NERRI results, specifically focusing on young people’s ethical concerns and their understanding and hopes for the future.
• September 2015: Ciência Viva invited researchers Martin Dinov and Andrew Vladimirov (Imperial College London; London Brain Hackers) for a stand featuring hands on experiments with neuroenhancement devices during the Lisbon Maker Faire. The two researchers discussed neuroenhancement and NERRI issues with several dozens of people (the event itself attracted more than 15 000 participants).
• January 2016: Participation of Elisabeth Hildt (University of Stuttgart) at the conference: "Human Enhancement and the Law – Regulating for the Future", Oxford University, UK.
• February 2016: Dutch and German NERRI partners organized at the Radboud University Nijmegen the public lecture ‘Beware for the boosted brain: questioning neuroenhancement from a scientific, philosophical, ethical and societal perspective’ with two key speakers and a question and answer session; and an interdisciplinary expert workshop with 30 participants including neuroscientists, psychologists, philosophers, social scientists and journalists from different countries.
• February 2016: Meeting in the European Parliament, Brussels, Belgium. NERRI partner EBC organized a breakfast meeting in cooperation with the European Parliament Panel: Scientific Technology Options Assessment to disseminate results of the project. The meeting was attended by 50-60 people, including MEPs, EU officials, scientific community and Brussels based stakeholders.
• February 2016: “Dia C: Melhoramento Cognitivo”, Pavilhão do Conhecimento, Lisbon. Ciência Viva organized a full day event at Pavilhão do Conhecimento, focused on ethical debates about neuroenhacement. After lunch, ~ 30 students from a secondary school near Lisbon discussed in groups to prepare a set of “positions” on neuro-enhancement. At night, in the auditorium of Pavilhão do Conhecimento, a debate on the ethics of neuro-enhancement was attended by more than 200 people. Three short presentations by a philosopher, a psychiatrist and a neuroscientist were followed by a debate with the public that started with the questions/issues raised by the students in the workshop.
• February 2016: Debate “Neuro-Enhancement Policies for the Future”, Central European University, Budapest, Hungary. Panel included participants from the consortium, Agnes Allansdóttir (Toscana Life Sciences), Imre Bárd (LSE), Rui Vieira da Cunha (IBMC), Judit Sándor (CEU) and Márton Varju (CEU), and was attended by CEU faculty and students.
• February 2016: Debate and art event, “A Clockwork Brain: How can art deepen the social discourse of science?”, Reykjavík Art Museum, Iceland. The Centre for Ethics hosted a panel discussion with several NERRI partners: George Gaskell (LSE), Judit Sándor (CEU) and Agnes Allansdóttir (TLS).
• February 2016: “Neuroart: Debate and Art Exhibition”, La Sapienza University, Rome. SISSA in collaboration with TLS and La Sapienza University organized a debate with neuroscientists, biologists, psychologists, scientific journalists and historians of philosophy from CNR, La Sapienza University, AgliotiLAB and Fondazione Giannino Bassetti.
• March 2016, “Neuroenhancement: Mirage or Miracle”, The Stag’s Head, London. Event organised by the London School of Economics’ team in collaboration with Jugular Productions, a company specialising in public engagement with science/art/ technology topics. The event brought together multiple perspectives around neuroenhancement. The event featured very short introductory position statements from the invited panellists in response to the question “Neuroenhancement: Mirage or Miracle?” A moderated discussion followed, chaired by Dr Shama Rahman, a neuroscientist and public engagement professional.
• May 2016: Illina Singh (Oxford University) made a presentation to the Board of the European Brain Council, in Brussels, Belgium, about NERRI public opinion survey across partner countries.
Publications
Publication of academic theses and journal papers were not NERRI’s main objective. Nonetheless, NERRI outcomes were also presented and analysed in academic papers, proceedings of conferences and books. NERRI partners wrote four articles on the main results and dimensions of the project: “Tools for Mutual Learning Exercises”; “Debating Neuro-enhancement”; “NERRI societal debate”; “Neuroenhancement, Responsible Research and Innovation: Challenges for Deliberative Democracy”; “Legal Implications and Considerations of Non-therapeutic Use of Neuroenhancing Pharmaceuticals and Devices”. These papers, submitted as deliverable 4.4 (restricted access), are being prepared for publication in reputable, peer-reviewed journals.
Furthermore, issues and debates related with neuroenhancement were reported in publications by partners of the project or external authors, including online publications, newspapers, magazines, and brochures. Below is a sample of the published or in print articles:
• March 2014: “Potenziamento cognitivo, la realtà del cervello aumentato”, Wired (italian edition), http://www.wired.it/scienza/biotech/2014/03/13/potenziamento-cognitivo-neuroenhancement/
• June 2014: NERRI was documented in a major Danish publication, Politiken, in an article that also presented the two NERRI events during the European Science Open Forum, Copenhagen.
• October 2014: Jóhannes Dagsson and Salvör Nordal, “Neuro-enhancement of healthy individuals. A dialogue with the public”, Skemman, published in Icelandic http://skemman.is/item/view/1946/19974;jsessionid=7325DFB3B36939E2795AD4FA8DD9D30F.
• Autumn 2014: “NERRI project: opening much-needed dialogue on neuroenhancement”, EBC NEWS, (http://www.braincouncil.eu/library/ebc-communication/ebc-news/)
• March 2015: “Inside a Brain Hackathon: Hacking Brain Waves to Extend the Mind”, article covering a MLE organized by NERRI partner LSE, http://motherboard.vice.com/read/brain-hackathon-hacking-brainwaves-to-extend-the-mind
• September 2015: Teresa Summavielle, “Comprimido para a esperteza?”, article addressing the use of smart drugs, focus on possible positive effects and expectable long-term effects, published in Portuguese, http://visao.sapo.pt/actualidade/sociedade/comprimido-para-a-esperteza=f828829.
• 2015: Hub Zwart, “Cognitive enhancement”, Handbook Posthumanism in Film and Television, Eds. Michael Hauskeller, Thomas D. Philbeck, Curtis Carbonell Palgrave.
• May 2016: “Smart Drugs, drogas inteligentes? O que queres saber sobre potenciadores cognitivos que outros sítios não te dizem”, booklet on smart drugs and the dilemas of neuroenhancement, aimed at secondary school publics, published by Portuguese partners IBMC and Ciência Viva (English version forthcoming).
• Forthcoming: Ronja Schütz, Elisabeth Hildt, Jürgen Hampel, edited book “Neuroenhancement: Interdisziplinäre Perspektiven auf eine Kontroverse”.
• Forthcoming: Jürgen Hampel and Nicole Kronberger, “The Interface between the Public and Science and Technology”; and Ronja Schütz, Christian Hofmaier, Núria Saladié, Gema Revuelta and Elisabeth Hildt, “Talking about what? Early Engagement Activities in the Context of Neuro-Enhancement Technologies”, two papers from NERRI included in The Next Horizon of Technology Assessment: PACITA Proceedings.
Deliberative stakeholder platform
The main expected impact of the project was stated in the NERRI White Paper on Neuro-Enhancement in Europe that culminates WP4, Governance of Responsible Research and Innovation. The lessons and recommendations formulated in the White Paper will be one of the main legacies of NERRI. But the project expects that development of this agenda should continue after the conclusion of the project. To this end, a self-sustained deliberative stakeholder and public platform was put in place using the online application, Netivist.org which will be linked to the NERRI webpage for two years after the end of the project.
Netivist is an open online forum that aims at stimulating participation and civic engagement, and its most popular debates engage more than 10 000 participants. NERRI will maintain a section on the Netivist page, allowing the public to be engaged in NERRI deliberations after the project’s conclusion. The section will take the form of a catchy title, a lead-in, an intro picture, a couple of paragraphs of text introducing a specific dilemma around neuroenhancement and questions for voting.
List of Websites:
Project’s website: nerri.eu. Project coordinator: Ana Noronha | anoronha@cienciaviva.pt
