I really learnt a great deal from the talks I have been attending, and I feel a particularly strong connection with the topic of scientific freedom. This relates to the place where I work as a researcher, the IRCM, which was created by one of our leading Canadian physicians, Dr Jacques Genest, who is an international leader in hypertension and the author of several hundred publications. Genest was a firm believer in scientific freedom: his motto, whenever he recruited new researchers, was to find the right people, to back them up, and keep out of their way. He had a strong commitment to scientific freedom but he was also a pioneer in developing bioethics in my country: his decisions led to the creation of the first Canadian bioethics centre directed until recently by Dr David Roy. Genest set an example of how scientific freedom needed to take into account ethics and social issues. So, while listening to the talks in the last days, I have tried to identify some areas that relate to the topic of this panel (neuroethics) and that reflect challenges and opportunities created by neuroethics. I think there are several of them and I will highlight two of them right now, which we can discuss together afterwards.

One challenge is the shape of the responses to ethical questions created by neuroscience, especially in terms of scholarship and policy: neuroethics is one form of response, and we shall debate and discuss this model. The other challenge relates to one of my main areas of research, public understanding of neuroscience and public information about science, a theme we have come back to over and over in the past two days. I think the question of how to transfer science to the public is complicated: we would like to think it was simple, but it is complicated. I will show data that indicates how neuroscience, for example, is creating both excitement and confusion. This of course can be problematic because we have to keep in mind that the misunderstanding of science can create and fuel fears and unjustified ethical concerns.

My own approach is based on the belief that we need to engage with ethics and social issues proactively: it means that these issues are not simply fears, they are challenges, potentially, and we have to find solutions to tackle them. The transfer of research to healthcare is something that I think we have alluded to in the last two days: we like to entertain a simple and idealistic view of the relationship between science and society. I will now use the work of a famous scholar of science communication, Dorothy Nelkin, to highlight that this cannot be the case. She says: “The way people perceive research and interpret costs and benefits may be influenced less by the details of scientific evidence than by media messages.�? This is concerning for many of us, I think; also, something else in the back of my mind is the relationship between liberty and scientific freedom, on the one hand, and the ethical obligations created by the conduct of research, on the other – I will come back to this.

First, I wish to spend a few words on neuroethics, which constitutes a response to the neuroscience revolution: I will try to describe this revolution by using three examples of different neurotechnological applications that are creating a lot of debate and ethical challenges. One of them is neurostimulation as a form of neurosurgical innovation; the second is neuroimaging research; the third is neuropharmacology and its potential use as a form of cognitive enhancement. In a few minutes I will highlight what I think are some of the responsibilities we need to enact as we move forward, in terms of neuroethics and the neuroscience revolution..

Neuroethics has been defined in different ways, and the following is by my colleague Judy Illes and me: “Neuroethics is a new field at the intersection of bioethics and neuroscience that focuses on the ethics of neuroscience research and the ethical issues that emerge in the translation of neuroscience research to the clinical and public domain. Although there are lively discussions on the nature of this new field, the single most important factor supporting it is the opportunity for an increased focus and integration of the ethics of medical specialties (neurology, psychiatry and neurosurgery) and of the ethics of related research to improve patient care.�? This definition, among others, highlights neuroethics as an ethics of neuroscience research and of the ethical issues that emerge in the translation of the neuroscience research to the clinical and public domains. Accordingly, neuroethics is considered an opportunity for an increased focus and integration of the ethics of medical specialties to improve patient care.

My approach is pragmatic and, for me, neuroethics clearly has practical goals, but I recognize by saying this that there are many other goals pursued by neuroethics. Neuroethics is also viewed as an opportunity to promote dialogue and public debate as well as a way to address basic lingering health care needs of specific neuropatient populations. I will be focusing on two of these multiple goals of neuroethics during my talk: one of them is to tackle challenges created by advances in neuroscience and neurotechnology; another is to promote public dialogue.

With regard to the neuroscience revolution, the first example I will discuss occurs in the field of neurosurgery, that is the use of deep brain stimulation (DBS), which is a form of surgical stimulation that has been used in over 35,000 people to treat Parkinson’s disease and is helpful to diminish tremors but does not represent a cure: for example, DBS does not solve some of the common psychiatric problems related to later stage Parkinson’s but it is a very interesting and promising therapy pioneered in France in the 1990s. There is now a growing interest in a broader application of DBS in psychiatry, but the cost of the device and its surgical implantation is approximately € 35,000. We have talked about access to technology in the past days; and we are dealing with the example of a technology that is obviously not available to everyone even though it has been clearly shown to be effective. The underlying issues here are the profit and economic interests underlying the evolution of neurodevices, proven to be one of the most profitable areas within medical devices. There is nothing necessarily wrong with profit making but the problem here is restricted to the sharing of the technologies which, in turn, ensures access to the therapy.

Another issue with DBS is that amongst the many studies of science in the media that I have conducted, I have never seen such hope and so much hype about a neuroscience technique. For example, we have identified that there is a growing amount of news coverage of neurostimulation in the US and UK: the headlines are very optimistic, and in a way they do not convey the reality of DBS. As I mentioned, DBS is being tried now in clinical trials in numerous psychiatric conditions: for example, one target is major depression, which is not treatable through psychotherapy, pharmacology or even electroconvulsive therapy. This serious form of depression can respond to DBS, based on a few recent studies, which is very promising, though as I mentioned there are resource allocation issues and public understanding problems.

The second example illustrating the neuroscience revolution relates to the field of functional neuroimaging. There are now a few techniques that capture brain responses when a volunteer or a patient performs a task: this is not structural imaging where you will identify a structure, but a type of imaging that measures brain function and activity. There are various strategies or techniques that are used, such as PET scan (Positron Emission Tomography) and EEG (Electroencephalography). One technique that is increasingly used, at least in research, is fMRI (functional Magnetic Resonance Imaging), because it is non-invasive and studies can be repeated or conducted in more vulnerable and elderly populations. This graph, in its upper segments, shows how from the 1990s to the early 2000s the proportion of fMRI research studies dealing with topics we have discussed in this panel increased, that is neurosocial studies examining how the brain responds to moral judgment, empathy, deception and lying, as well as judgments on race, and neuroeconomics. These studies account for a growing proportion of fMRI research: this is not something necessarily or intrinsically bad; but rather quite exciting and interesting. The problem is that this research, strictly speaking, has not remained within the realm of science: it is becoming applied science and is leading to uses of this technology beyond a research context. One example is No Lie MRI, based in San Diego, which sells fMRI as a new type of lie detection technique: in the US there is certainly some interest in this form of fMRI use.

The problem with such uses of fMRI is that, at this point in time, we do not have the research to support them. Studying lying and deception is highly complicated: you have to take into account potential differences between lying in a natural context and an artificial environment like a research lab; you also have to factor in the difference between various forms of lying, such as deliberate lying, concealing information, or simply not remembering the details of a crime scene. These forms of lying and deception could involve different brain systems and cognitive processes; at this point in time it is difficult to reliably detail them with fMRI and, therefore, difficult to identify if someone really is lying or deceiving. There are many other applications of fMRI: one of the underlying issues is obviously the premature application of science and, as we saw, this can do a disservice to ethics and science. Another recent application, from September 2008, is the use of brain scans in India to incriminate individuals: this is a very debatable use of imaging but it is nonetheless occurring.

Now, a piece of data from my own research is a study that examined neuroscience innovation in the print media of the US and the UK: over 1,250 news pieces were analyzed and we found many things, including problematic science reporting. However, some of the most interesting findings were qualitative in nature and involved three emerging interpretations of neuroscience: the first one was neuroessentialism (in a nutshell, the belief that we are our brains and that neuroscience is dealing with this), which raises the stakes prematurely and may create fears; the second one was neurorealism, that is, that neuroimaging techniques can provide forms of mind reading, even though these only measure indirect brain activity (such as brain metabolism or brain oxygenation) rather than the activities of neurons per se and there are several issues associated with the scientific project of measuring, localizing, and mapping the activity of thousands of neurons (this is an ongoing and unfolding science, and the kind of claims that we are finding in the media do not necessarily reflect our progressive understanding of brain function); the third one, which I think may be more interesting for this audience, was the use of neuroscience to inform decision making policy and lifestyle choices, that is, neuropolicy, which could evolve in different ways. With regard to the latter, I selected one example from a rightwing group in the US who approached a researcher to use fMRI to show that pornography is addictive: there was a clear political agenda behind this request and there are some groups wanting to finance this and other research to find brain activity patterns that relate to what they want to convince you of. So, this is a really interesting process that is happening here and I think it clearly calls for broader approaches beyond the academia and to engage in policy-making.

The third example of the neuroscience revolution I want to spend time on is cognitive enhancement: I learnt yesterday that this topic is being discussed in the European Parliament. Cognitive enhancement includes the use of drugs and other interventions to modify brain processes with the aim of enhancing memory, mood and attention in people who are not impaired by illness or disorder. This issue has been gathering media coverage such as this example from the Economist of last spring: this image summarizes some of the expectations regarding smart pills such as the belief that we will be able to simply pop pills and be smarter. If it could be this easy, it would be terrific. Seeing this you may think: is our speaker describing some kind of science fiction? Is this happening and should we be concerned about this? Perhaps. These are data from a Nature poll published last spring showing that in over 1,400 respondents, 20% reported having used cognitive enhancers, slightly more than for medical use, and interestingly there was a fairly equal distribution of individuals using the drugs on a daily, weekly, monthly and yearly basis. One of the most frequently used drugs was Ritalin: we did a review to see if this was a prevalent practice and found data from the US describing how Ritalin was used on college campuses, suggesting that this involved between 3.7% and 11% of students – not something marginal (and we are talking here about self-reported behavior). How much of this really reflects reality is still unknown: I think we have poor prevalence data on the non-medical use of prescription drugs. In response to this situation, some neuroethics colleagues, Hank Greely from Stanford, John Harris from Manchester, and Martha Farah from Penn University, published a piece in Nature highlighting concerns with regard to cognitive enhancement. At this time, we do not have data on the non-medical uses of these types of drugs. There are many other concerns such as protecting the liberty of individuals to engage in those practices, and fair access – if the drugs were efficient, there would be an issue of ensuring fair access to them. Another issue is to gather more research-based evidence and, finally, to engage professional societies in proactive debate about the growing use of drugs and improving public understanding, while installing limited legislative action. This is what the authors of this Nature paper called for, and they highlighted these concerns while voicing the opinion that the proper social response is to be favorable to cognitive enhancement uses: they argued that cognitive enhancers should be viewed in the same general category as education, good health habits and information technology. I have no set idea of how we should conclude, necessarily; before concluding in favor of cognitive enhancers we need to seriously address the issues highlighted by the authors of this Nature piece. I will now show you some data that fleshes out the importance of those challenges and potentially their policy implications.

The first research we did was to examine how the media described cognitive enhancers: when you look at the terms used to describe cognitive enhancers, they do not look too scientific and you can sense the kind of expectations and belief they support. When we compared print media coverage to content from bioethics and public health, we found that they actually entertained fairly different views about this problem or issue.

In the print media, non-medical use of prescription drugs tended to be described as a lifestyle choice: the idea captured here is that we are more and more competitive and have access to different resources and, accordingly, neuropharmaceuticals are one of the ways that allow us to cope with growing pressures; consequently, non-medical use of prescription drugs is viewed as another lifestyle choice and individual decision. In bioethics there is a wide range of views on the term “cognitive enhancement�? used in a way which may suggest that we can actually enhance [cognition], even though we have no good data to support this – which is problematic. If you look at public health discourse, you will actually find v
ry negative labels attributed to this, such as “drug abuse�? and “drug misuse�?. The perspectives (media, bioethics, public health) are therefore very different suggesting that various stakeholders have very different ethical opinions and beliefs; there have not been many debates about this, at least in my country.

I now wanted to highlight some of the gaps between the bioethics content and the print media: as you can see here, a lot of these issues are not discussed in the public domain or public health literature. There are a number of issues in particular that lead to a fair amount of debate, for example drug safety for non-medical use, considerations such as whether this constitutes cheating or not, the issue of justice and distributive justice, and, potentially, the lack of individual autonomy (coercion).

We looked at the potential recommendations put forth in different debates, and identified a range clearly showing that there is no consensus. In bioethics there are opinions ranging from the proposal to distribute these drugs to everybody right up to prohibition of non-medical uses: therefore the recommendations are diverse and scattered. We also examined if there were challenges related to the recommendations: in public health debates there does not seem to be a feeling that there will be obstacles in preventing or tackling those practices, which is really interesting. We are also seeing that where bioethics and media debates tend to be more optimistic the public health perspective tends to be negative, suggesting disengagement and a need for public health to look into the challenges of preventing or approaching the issue of cognitive enhancement.

The other piece of research I want to go through is based on focus groups, a method used in social science to examine opinions and reactions regarding a great range of topics, and in marketing research and policy studies to understand perspectives. We used focus groups to get a better idea of how stakeholders responded to ethical issues of cognitive enhancement: we recruited university students, their parents, and health care professionals, to focus on the non-medical use of Ritalin. We gained some insights with this research: one of them was the fact that these are prescription drugs, and they seem to convey a sense of safety to the students, but also to parents, that is, that they are safe in a general sense without taking into consideration the context in which they are used. They are safe, they said, otherwise physicians would not have prescribed them. What is interesting with focus groups is that they clearly show that students and citizens are clever and that there is a wide range of opinions in the public: for example, you see here that students clearly identify the problematic nature of a non-medical use of a prescription drug. If these practices are happening outside a supervised medical environment, adverse effects may not be reported, thus the belief that there are no risks becomes a self-fulfilling prophecy because you have no reliable data on adverse effects.

Another important finding that we noted was that the way in which different stakeholders viewed this practice could suggest more widespread diversity in society at large: for example, non-medical uses have surfaced in the academia. Why would they not be used by medical professionals that perform in highly stressful environment (e.g., a neurosurgeon)? This has actually been discussed in the peer review literature: what if you added the issue of making money, as one student suggested?

Another finding is that Ritalin was being considered as another type of resource, like drinking coffee and, interestingly, we found statements connected to this view suggesting that we identify these practices as the cause of problems; in fact, they may be a consequence of social pressure and expectation, rather than the cause. This would suggest that there are underlying forces shaping part of the context of cognitive enhancement.

The last piece of data I want show to you is actually one of the most interesting we found: in a specifically Canadian context (and I would not know about this on an international level) we found that in a fairly broad sense stakeholders viewed the non-medical use of prescription drugs as within the purview of personal choice, and that it was considered an individual decision based on beliefs in personal liberty and respect for autonomy. I would counter-argue that this view is actually lip service to autonomy, and here is why: participants described this practice as the result of personal choice, but when we looked at [social] pressure they actually started describing huge social pressures to use these cognitive enhancers. These took the form of pressure to be best, competition with other students, changes in social expectations, and the fear of being at a disadvantage by not using cognitive enhancers. This led us to formulate the following model, where we suggest that there is a lip service to autonomy because the overwhelming social pressure that was described seemed to push strongly in favor of social acceptance without major criticism or review of the scientific aspect of this practice.

Now I am coming back to the Nature piece with a few comments based on the data I have presented to you; I think we have to be concerned about safety and we have to look seriously into this. We also have to look into public perceptions based on the data I showed you that suggest potential misunderstandings about the non-medical use of drugs like Ritalin: I think we have to be concerned about the issue of autonomy. It won’t be straightforward to monitor and capture the different contexts in which, internationally speaking, cognitive enhancers will be used: if they are considered within a privileged academic environment, they can appear as a clear advantage in order to perform better. However, they may not be viewed in the same way in completely different contexts where demands are placed on individuals who are in a different kind of individual rights environment: engagement of professional societies will need to be a priority, and we have not seen many medical societies being involved in debates. This will be one of the things to do in the future, but better public understanding is also an area of significant importance. What I fear with the emergence of the public debate on this, and its highly controversial aspects, is that legitimate use of medications like Ritalin will be viewed as an enhancement in itself: my fear is that some will over-generalize and the controversies about cognitive enhancement will overshadow this debate.

To conclude, I think that neuroethics and the neuroscience revolution point to a number of ethical responsibilities that need to be assumed: they need to be addressed by the scientific community in partnership with other stakeholders. These responsibilities range from ensuring integrity in the research environment to proactively tackling the ethical issues generated by neuroscience: for example, with regard to civic and democratic responsibility, my research shows that we need to move away from the idea that the media – and not only the media, but science popularization as a whole – is simply a pipeline. We need to reconsider our beliefs that scientific experts will just straightforwardly convey their message to the media: I think it is much more complicated than this. Science communication has to be based on a case by case approach, based on the types of technology and issues involved, and we also need to consider a more dynamic model of science communication where scientists try to engage in public discussion and public dialogue to explain the rationale behind their inquiry. Underlining this view, which we presented a few years ago in Nature Reviews Neuroscience, is the idea that science provides a model for public debate, because at its core is not only public discussion but a model based on some minimal commitments to reasonable public discourse: this way, science can provide a very interesting model for public debate. I want to thank my current and previous trainees who work with me and helped with this research; I also wish to acknowledge the different funding agencies without which this work would be impossible, as well as some of the international collaborators involved in the pieces of research I have presented today.

ITALIAN VERSION:
“Neuroetica: affrontare le sfide etiche e sociali della rivoluzione delle neuroscienze�?

di Eric Racine, direttore, Neuroethics Research Unit, Institut de recherches cliniques, Montréal, Canada

Grazie per avermi invitato; essere qui per me è un onore e una gioia. In questi ultimi due giorni ho avuto modo di imparare molte cose sui dibattiti in corso in Europa sui temi della scienza, della politica e dell’etica. Ho appreso veramente molto dagli interventi ai quali ho assistito finora. In particolare, mi sento profondamente legato alle tematiche della libertà scientifica. Il motivo è legato al luogo in cui lavoro come ricercatore, l’IRCM, un istituto creato dal dott. Jacques Genest, uno dei massimi fisici canadesi, riferimento assoluto a livello internazionale per l’ipertensione e autore di diverse centinaia di pubblicazioni. Genest era un convinto sostenitore della libertà scientifica. La sua filosofia, quando doveva reclutare un nuovo ricercatore, era quella di trovare la persona giusta, farla crescere e poi lasciarla libera di scegliere il percorso di ricerca desiderato. Credeva fortemente nella libertà scientifica, ma è stato anche precursore nello sviluppo della bioetica nel mio paese. Le sue decisioni hanno portato alla creazione del primo centro di bioetica canadese, diretto fino a poco tempo fa dal dott. David Roy. Genest è stato un esempio di come la libertà scientifica avesse bisogno di tenere conto dell’etica e delle questioni sociali. Quindi, mentre ascoltavo gli interventi degli ultimi giorni, ho tentato di individuare alcune aree che si ricollegano all’argomento di questo gruppo di lavoro – la neuroetica – e che rispecchiano le sfide e le opportunità poste dalla neuroetica. Penso che ve ne siano diverse e in questa sede mi soffermerò su un paio di essi, di cui potremo discutere nel prosieguo.

Una sfida si può sintetizzare nella forma che deve assumere la risposta alle sfide etiche poste in essere dalla neuroscienza, in particolare la forma assunta dalla dottrina e dalla politica. Una possibile è data dalla neuroetica ed è attorno a questo modello che possiamo incentrare il dibattito e la discussione. L’altra sfida è correlata ad una delle mie principali aree di ricerca, la sensibilizzazione dell’opinione pubblica in materia di neuroscienza e l’informazione pubblica attorno alla scienza, un tema sul quale ci siamo soffermati ripetutamente nelle ultime due giornate. La questione di come trasferire la scienza al grande pubblico è complessa; vorremmo pensare che sia una cosa semplice, ma è complicata. Vi mostrerò alcuni dati che indicano come la neuroscienza, ad esempio, stia creando al tempo stesso esaltazione e confusione. Questo, ovviamente, può essere problematico perché dobbiamo tenere a mente che la cattiva comprensione della scienza può creare e alimentare timori e preoccupazioni etiche ingiustificate.

Il mio approccio personale si basa sulla convinzione che dobbiamo affrontare le sfide etiche e sociali in modo propositivo. Ciò significa che queste questioni non sono semplicemente timori. Sono sfide, potenzialmente, ed è nostro compito trovare soluzioni atte ad affrontarle. Ecco, questo è un aspetto che secondo me è emerso varie volte in questi ultimi due giorni, ossia il trasferimento della ricerca al sistema sanitario. Ci piacerebbe nutrire una visione semplice e idealistica dei rapporti tra scienza e società. Mi appellerò in questa sede all’opera di una celebre studiosa di comunicazione della scienza, Dorothy Nelkin, per evidenziare come questo non sia possibile. Lei sostiene che “Il modo in cui il pubblico percepisce la ricerca e ne interpreta costi e benefici può essere influenzato non tanto dai particolari delle prove scientifiche quanto dai messaggi mediatici.�? Piuttosto preoccupante per molti di noi, direi. C’è poi anche qualcos’altro che non dimentico, ed è il rapporto tra l’autonomia e la libertà scientifica, da un lato e, dall’altro, gli obblighi etici posti in essere dalla condotta della ricerca. Tornerò più avanti su questo punto.

Prima vorrei spendere alcune parole sulla neuroetica. La neuroetica rappresenta una risposta alla rivoluzione della neuroscienza. Cercherò di descrivere questa rivoluzione facendo ricorso a tre esempi di altrettanto diverse applicazioni neurotecnologiche che stanno alimentando un acceso dibattito e sollevando problematiche di natura etica. Una di esse è la neurostimolazione intesa come forma di innovazione neurochirurgica; la seconda è la ricerca in neuro immagine; infine, la terza è la neurofarmacologia e il suo potenziale utilizzo come forma di attivazione cognitiva. Farò luce, sulla base della neuroetica e della rivoluzione della neuroscienza, su quelle che secondo me sono alcune delle responsabilità che dobbiamo introdurre se vogliamo andare avanti.

La neuroetica è stata definita in vari modi. La definizione che segue è stata proposta dalla collega Judy Illes, insieme a me:

“La neuroetica è un nuovo campo posto all’intersezione tra bioetica e neuroscienza, che studia l’etica della ricerca sulle neuroscienze e le questioni etiche che emergono nella trasposizione della ricerca sulle neuroscienze nell’ambito clinico e pubblico. Nonostante l’animato dibattito che verte attorno alla natura di questo nuovo campo, il fattore più importante a suo favore è l’opportunità di richiamare ancor più l’attenzione sullo studio e l’integrazione dell’etica delle specialità mediche (neurologia, psichiatria e neurochirurgia) e dell’etica della ricerca correlata allo scopo di migliorare la cura dei pazienti�?.

Questa definizione pone l’accento sulla neuroetica in quanto etica della ricerca sulle neuroscienze e sulle questioni etiche che emergono nella trasposizione della ricerca sulle neuroscienze negli ambiti clinici e pubblici. Conseguentemente, la neuroetica viene considerata un’opportunità per migliorare lo studio e l’integrazione dell’etica delle specialità mediche al fine di far progredire le cure per i pazienti.

Il mio è un approccio pragmatico e, dal mio punto di vista, la neuroetica si pone chiaramente degli obiettivi pratici. Riconosco comunque, pronunciando queste parole, che esistono numerosi altri obiettivi perseguiti dalla neuroetica. Essa è vista anche come un’opportunità per promuovere il dialogo e il pubblico dibattito, nonché come un modo per affrontare alcune annose esigenze di base dell’assistenza sanitaria per specifiche popolazioni di pazienti neurologici. Nel corso del mio intervento mi soffermerò soprattutto su due di questi molteplici scopi della neuroetica. Uno di essi riguarda la necessità di affrontare le sfide create dai progressi compiuti in neuroscienza e neurotecnologia; l’altro è invece orientato alla promozione del dialogo pubblico.

Parliamo ora della rivoluzione della neuroscienza. Il primo esempio che intendo illustrare si riferisce a un fenomeno in corso nel campo della neurochirurgia, ossia l’impiego della stimolazione cerebrale profonda (DBS, deep brain stimulation). La DBS è una forma di stimolazione chirurgica utilizzata in oltre 35.000 pazienti per il trattamento del morbo di Parkinson e favorisce la diminuzione del tremore, pur non rappresentando una cura. Ad esempio, la DBS non risolve alcuni dei problemi psichiatrici comunemente correlati al Parkinson all’ultimo stadio, ma è comunque una terapia molto interessante e promettente, sperimentata in Francia negli anni ’90. Assistiamo ora a un interesse crescente per un più ampio ventaglio di applicazioni della DBS in psichiatria. Il costo del dispositivo e dell’impianto chirurgico ammonta a circa 35.000 €. Avendo parlato di accesso alla tecnologia nei giorni scorsi, ora