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PERSPECTIVES

                                                                                                       International initiatives
 SCIENCE AND SOCIETY
                                                                                                       The United States has been a hub of twenty-
                                                                                                       first century neuroethics activity, and has

International perspectives on                                                                          hosted various key events that have come
                                                                                                       to define the field. In 2002, for example, the
                                                                                                       Dana Foundation BOX 1 sponsored the con-
engaging the public in neuroethics                                                                     ference ‘Neuroethics: Mapping the Field’8.
                                                                                                       In 2004, the American Association for the
                                                                                                       Advancement of Science (AAAS) sponsored
Judy Illes, Colin Blakemore, Mats G. Hansson, Takao K. Hensch,                                         a meeting on neuroscience and law9 and, in
Alan Leshner, Gladys Maestre, Pierre Magistretti, Rémi Quirion and                                     2005, another on neuroethics and religion.
Piergiorgio Strata                                                                                     The Library of Congress sponsored a neuro-
                                                                                                       ethics meeting called ‘Hard Science – Hard
                                                                                                       Choices’, also in 2005. With funding from
With an ever-increasing understanding              to our ‘selves’4. Frontier technology that is       The Greenwall Foundation, a special issue
of the brain mechanisms associated with            able to touch on our personhood5, especially        of the journal Brain and Cognition was pub-
core human attributes and values, there is         in bioscience and information science, is           lished devoted to ethical issues in advanced
an increasing public interest in the results       shaping our future. The public must have the        neuroimaging 10 , The Dana Foundation’s
of neuroscience research and the ways in           power — defined by quality of knowledge             journal Cerebrum published a special issue
which that new knowledge will be used.             and ease of access — to help shape that future.     on neuroethics in the Fall of 2004 REF. 11 and
Here, we present perspectives on engaging          Neuroethics has surfaced, and is here to stay,      the US-based American Journal of Bioethics
the public on these issues on an international     if not for this reason alone. Gone are the days     published its own special issue on neuro-
scale, the role of the media, and prospects        when behaviour was reduced directly to the          ethics in 2005 REF. 12. The fierce interest
for the new field of neuroethics as both a         function of a single gene; instead, behaviour       of the American public in their brains, and
focus and a driver of these efforts.               is increasingly seen to be an emergent prop-        growing understanding about brain diseases
                                                   erty of a distributed information processing        that affect millions of people, has been due, in
The first chapter in Mary Roach’s book Stiff:      system, synapses and neurotransmission6.            part, to concerted efforts to share the excite-
The Curious Lives of Human Cadavers is             Genetics provides crucial bottom-up tools           ment of neuroscience discoveries as well as
called ‘A Head is a Terrible Thing to Waste’1.     with which to investigate inherited mecha-          their ethical, social and legal implications.
That this book holds a top place on the New        nisms linked to illness, and although the               Public engagement efforts in the United
York Times bestseller list is no surprise. The     ethics of genetics and other neighbouring           States have generally involved two approaches
interest of the public in the workings of the      disciplines provide a legitimate starting point     to science literacy and action — education
body and the human mind is an age-old              for thinking about neuroethics, they do not         and dialogue. This is consistent with the
phenomenon. Depictions of the anatomy              suffice. Top-down tools, such as neuroimag-         approaches described by the World Health
theatres of the sixteenth and seventeenth          ing, provided by integrative neuroscience now       Organization13 for informed decisions about
centuries in Holland by Rembrandt in his           have an important role in pursuing knowledge        health care, participation in government deci-
famous painting ‘The Anatomy Lesson of             about what it is to be human, and responding        sions in research and treatment of new neuro-
Dr. Joan Deijman’, and elsewhere2, show that       to the global burden of CNS disease. New            logical disease and mental illnesses, critical
the dissection of the human form and condi-        challenges are defined by both the sheer            judgement of neuroscience-related material
tion has long been a matter of both public         complexity of neuroscience research and the         in popular media, and promotion of optimal
spectacle and education3.                          interpretation of data that is bound by culture     brain development. The straightforward
    Today, the curiosity and hope that are         and human anthropology7. In anticipation of         educational approach encompassing these
associated with neuroscience are closely           growing areas in which attention might be           approaches seeks to increase public under-
linked to the explicit ethical, legal and social   paid to neuroethics, we explore neuroethics         standing and appreciation of neuroscience
issues that have come to accompany it. In the      priorities across international borders, the role   research. The dialogue approach attempts
public arena, there is growing recognition         of the media and prospects for this burgeoning      to engage the public in discussion about
and acceptance that the brain is the seat of the   field, which are likely to have a far-reaching      the significance of neuroscience discovery
mind, and thus central to our very humanity,       effect on public engagement.                        for society.


NATURE REVIEWS | NEUROSCIENCE                                                                                     VOLUME 6 | DECEMBER 2005 | 977
PERSPECTIVES


 Box 1 | The Dana Alliance                                                                             to engage in neuroethics activities, especially
                                                                                                       in the context of the annual Brain Awareness
 The Dana Alliance, which includes the Dana Alliance for Brain Initiatives in the United States        Week, which is now a global event. Many
 and Canada, and the European Dana Alliance for the Brain, is a non-profit organization. It is         Canadian chapters hold outreach events
 supported by the Dana Foundation, whose membership includes 400 leading neuroscientists,              aimed at explaining the impact of recent
 including 15 Nobel laureates. The Dana Alliance is committed to advancing public awareness            discoveries on the treatment of neurological
 about the progress and benefits of brain research, and to disseminating scientific information        disorders and mental illnesses to the public.
 to the general public in an understandable and accessible fashion.
                                                                                                       INMHA has observed that public participa-
   Since the May 2002 conference on neuroethics, co-sponsored with Stanford University, USA,
                                                                                                       tion is markedly enhanced if target topics are
 and the University of California San Francisco, USA, and published proceedings, the Dana
                                                                                                       disease-oriented or particularly provocative
 Alliance has followed up by sponsoring and hosting symposia, forums and workshops, publishing
 newsletters and articles, and advancing discussion on this crucial new field in the United States
                                                                                                       (for example, music and the brain, or sex
 and Europe. The latest book from the Dana Press is The Ethical Brain by Michael Gazzaniga.            and the brain). Public participation is also
   The Dana Centre at the Science Museum in London is a new focus for public engagement. It            notably strong in Canada where graduate
 provides a lively programme of talks, debates and other events on many aspects of science that        students are directly involved in organizing
 are aimed at an audience of young adults. Because the offices of the European Dana Alliance for       the events, including visits to primary and
 the Brain are housed in the same building, the programme of events has quite a strong emphasis        junior high schools. Canadian leadership
 on neuroscience, but it extends across the whole of science. The Centre has state-of-the-art          believes, as others have observed19, that it is
 facilities for digital communication: James Watson took part in a webcast discussion, and earlier     vital to engage the public with neuroethics as
 this year a transatlantic video-conference on neuroethics was held between the Dana Centres in        early as possible in life.
 London and in Washington around the theme ‘The Ethical Brain’14.                                          Canadian schools lead additional initia-
   For more information on the Dana Alliance, its grants, outreach activities, and free                tives that expose students to various aspects
 publications, visit www.dana.org.                                                                     of neuroscience and the career opportuni-
                                                                                                       ties in the field. One particularly popular
                                                                                                       venue is a free movie series held at the
                                                                                                       campus of the Douglas Hospital Research
    Specific public education efforts have          research as well as the societal implications      Center in Montreal. At the end of the show,
originated from funding agencies, including         of neuroscience advances. She also began           neuroscientists comment on the movie and
many at the National Institutes of Health           discussions of how to broach these subjects        answer questions from the audience. Movies
(NIH), from professional societies, such as         with the public.                                   shown during the past 2 years include A
the Society for Neuroscience (SfN), and more            In The Ethical Brain14, Gazzaniga introduces   Beautiful Mind (schizophrenia), Rain Man
specialized groups focused on both neurology        ethical issues that concern the development        (autism), Pollock (alcoholism) and Fourth
and psychiatry, and from patient advocacy           and expression of human consciousness —            of July (post-traumatic stress disorder).
groups, such as the National Alliance for the       issues that are central to understanding the       Both positive and negative messages must
Mentally Ill (NAMI). A dramatic effort was          nature of humanity and our very existence.         be carefully considered with events that
the initiative that culminated in the declara-      For example, understanding at what develop-        feature such popular films, as stereotypical
tion of the ‘Decade of the Brain’ in 1990. The      mental stage consciousness first emerges has       depictions of the mentally ill that “may seem
efficacy of the effort was evident, in part, from   implications for embryological research and        like harmless Hollywood distortions”20 have
the ever-growing public acceptance — gained         its applications. A study by Kosfeld and his       a way of working themselves into society’s
after decades of intensive work by scientists,      colleagues on neuroendocrine influences of         subconscious. In 2004, in partnership with
clinicians, and patients and their families         human trust provides another example of            the Canadian Alliance for Mental Health,
— of the fact that severe mental illnesses such     ways in which neuroscience research might          INMHA organized ‘Mindscape’, an art exhi-
as schizophrenia and bipolar disorder are           get closer than ever before to elucidating         bition presented at the National Art Gallery
brain diseases rather than simply symptoms          core human traits and values15. These extend       of Canada in Ottawa that was aimed at reduc-
of weak wills or poor parenting.                    naturally to other neuroethics issues, includ-     ing the stigma and discrimination linked to
    Dialogue with the public has led to             ing issues of personal responsibility in brain     brain disease and mental illness. INMHA
increasing recognition that advances in             diseases that affect behaviour16, vulnerability    also actively supports the development of a
neuroscience and their application in clinical      of individuals with addictions or dementia17,      bilingual, interactive public-oriented web site
settings could have significant ethical and         and privacy18.                                     on the functional organization of the normal
legal ramifications that require discussion             Canada is following closely on the heels       and pathological brain (The brain from top
not only among scientists but with all stake-       of US leadership in promoting opportunities        to bottom, based at McGill University).
holders. For example, the US President’s            for engaging the public in neuroscience, and       This site represents many different levels of
Council on Bioethics, which was created by          the support for specific research initiatives in   expertise and is among the most frequented
an executive order in 1995, has devoted some        neuroethics, largely through multi-year team       by major search engines.
effort to issues related to neuroethics. Another    grant programme funding, surpasses that                In Japan, one of the world’s most educated
example is that of Huda Akil, who dedicated         of the United States. Led by the Institute of      and most rapidly ageing societies, govern-
her presidential year (1998) at the American        Neuroscience, Mental Health and Addiction          ment efforts to promote brain research at
College of Neuropsychopharmacology to               (INMHA), one of the Canadian Institutes            both ends of the life spectrum are being
working on ethical issues relating to basic         of Health Research, a partnership has been         encouraged. In 1995, sleep disorders were
and clinical neuroscience. She convened a           formed that includes the Dana Foundation,          recognized as both a health and a social
series of meetings and workshops that con-          the Canadian Chapters of SfN and non-              problem21. Studies were designed to focus not
sidered the ethical conduct of neuroscience         government voluntary sector organizations          only on the medical features but also on the


978 | DECEMBER 2005     | VOLUME 6                                                                                     www.nature.com/reviews/neuro
PERSPECTIVES


characteristics and role of sleep and dreaming        Japanese scientists were also the first to      publications such as Travel in the Brain30,
in Asian culture and philosophy. In 2003,          develop MRI techniques for the early detec-        and a newly founded National Institute of
the research initiative ‘Nurturing the Brain’      tion of amyloid plaque deposits in the brain       Neuroscience place neuroscience literacy
was launched to focus on the development           in vivo well before the onset of dementia28.       among their core objectives. Television,
and maintenance of ‘normal’ brain function.        Similar advances might motivate the design         magazines and public lectures by scientists,
These new efforts encompass embryonic and          of brain–machine interfaces (neural pros-          particularly in high schools, further respond
postnatal maturation as well as education,         theses) beyond primary sensory systems29. As       to the Italian public’s interests in and call for
adult learning and prevention of mental            recently introduced in an inaugural sympos-        neuroscience information. In 2004, a meet-
decline with ageing22. The honorary presi-         ium on ‘Neuroethics of Nurturing the Brain’        ing on the ethics, social, humanitarian and
dent of the International Brain Research           at the Japanese Society for Neuroscience           ecological aspects of robotics was held in
Organization, Masao Ito, was among the             meeting in 2005, a significant issue in these      Sanremo, Italy31. This event was representa-
first to embrace the Brain Awareness Week          discussions is the definition of an optimal or     tive of the growing interest in ‘technoethics’,
concept, which has seen increasing par-            ideal brain. Both cultural and personal inter-     in which the initial emphasis was on neu-
ticipation in Japan since its launch almost        pretations must be honoured, and neuroethics       rally-controlled implantable devices. This
6 years ago. He also promoted current ini-         must co-evolve with the science that upholds       interest is gaining momentum in other parts
tiatives of the Organisation for Economic          the importance of individual differences.          of Europe (as indicated by events such as the
Co-operation and Development (OECD)                                                                   International Conference on Robotics and
to link brain science and education in the                                                            Automation 2005 Workshop on Robo-Ethics
form of international research networks on         “One of the greatest societal                      in Barcelona32), and in the United States.
literacy, numeracy and life-long learning.                                                                In Sweden there is a long tradition, upheld
    One of the greatest societal demands
                                                   demands in Japan is for                            by universities, hospitals and research foun-
in Japan is for accurate information about         accurate information about                         dations, of advancing public awareness about
critical periods in brain development. When                                                           the progress and benefits of brain research.
is the best time to begin teaching English?        critical periods in brain                          The activities of the Decade of the Brain
Or sports? What is the influence of video          development.”                                      in the 1990s reached all sectors of society,
games, cell phones and ‘anime’ (Japanese                                                              and the Swedish Brain Foundation has col-
animations) on children? Many of the mod-                                                             laborated with local hospitals and schools for
ern ills emerging among Japanese youth are            With a proactive focus on the overall           several years during their Brain Awareness
attributed to excessive technology. Staggering     understanding and dissemination of infor-          Week. Yearly conferences held on a regional
increases in violent crimes, vagrancy and sui-     mation about brain function and diseases,          basis, and publications such as The Brain
cide among this sector of the population raise     a Brain Awareness Week has been held in            of the Child (Royal Swedish Academy of
many questions about what can be done for          Switzerland every year since 1998 with con-        Sciences, 2005) are successful mechanisms in
children who burn out (known as ‘kireru’).         siderable success. In 2005, a joint ‘Festival      this country for disseminating information
In response, large cohort studies that will        Science et Cité — Brain Awareness Week’            about neuroscience research and discover-
follow 10,000 Japanese children during the         focused on the theme of consciousness,             ies that might alleviate suffering for patients
first several years of life have been launched     and involved 19 cities with more than 500          with brain diseases.
under the rubric of ‘Brain Science and             events, including exhibits, films and open             In 2005, eight sponsors of research from
Education’. This links paediatricians, educa-      conferences. Artists-in-residence and actors       both the public and private sectors under-
tors, parents and scientists on a scale that has   stayed in research laboratories or hospitals       took an ambitious initiative to specifically
not previously been attempted23. Privacy and       and produced a theatre piece that was shown        promote public engagement in matters
confidentiality are key issues for the nascent     during the festival. These events, which           relating to brain research and neuroscience
ethics committees across the country.              were co-sponsored by the European Dana             in Sweden. The effort includes collaborations
    Scientists in Japan are at the forefront of    Alliance for the Brain (EDAB) in partnership       with local science museums and schools.
understanding the cellular and molecular           with the Swiss Society for Neuroscience and        Forskning, a public web site, is a core resource
bases of critical periods in brain develop-        held under the patronage of the Minister of        for stimulating debate and discussion. This
ment24. One need only consider the synchro-        Education and Research, also led to the crea-      project differs from previous ones in Sweden
nized, photic seizures that were induced in        tion of other structures designed to bridge the    in that it includes a comprehensive section
almost 1,000 Japanese children by an episode       gap between science and the public. Among          on neuroethics. Issues that relate to personal
of Pokemon to see the relevance of the basic       the most innovative are ‘cafés scientifiques’, a   responsibility and identity, discussions about
biology of neural plasticity to humans25. Stem     movement originating in the United Kingdom         what is normal and the potential benefits of
cell research26 is also facing ethical scrutiny,   that provides an informal setting for dialogue     enhancing brain function are raised, as are
but, in general, the largely Buddhist culture      between scientists and the public.                 the consequences of manipulating complex
views the research as a positive contribu-            Brain Awareness Week is also a recurring        human behaviour.
tion to society. Similarly, although Japanese      initiative in Italy. Originally undertaken by          The strong current commitment to sci-
researchers have revealed signature changes        several individual scientists and now coor-        ence communication in the United Kingdom
on functional MRI (fMRI) that accompany            dinated on a broader scale by the Italian          was launched by the Bodmer Report from
second language learning27, concerns about         Neuroscience Society, it involves 100 events       the Royal Society, the British Association
mind reading and neural discrimination,            spread across the entire national territory.       for the Advancement of Science and the
which have emerged in other parts of the           The Italian Government was the first in the        Royal Institution in 1985. The establish-
world, have not penetrated this island             world to endorse the US-led initiative for         ment of a national Committee on the
nation.                                            the Decade of the Brain in the 1990s, and          Public Understanding of Science in 1986


NATURE REVIEWS | NEUROSCIENCE                                                                                    VOLUME 6 | DECEMBER 2005 | 979
PERSPECTIVES


led to a wide range of activities, from an        help teachers understand the workings of          in neuroscience across the academic com-
annual National Science Week to graduate          the brain, behaviour that has an impact on        munity, government and general public,
courses in science communication. A shift         brain health, and the basis of individuality      and skepticism that brain research can bring
of emphasis from didactic communication to        and personal style.                               concrete benefits when minimum standards
active dialogue came in 2000 with a report            The response to these initiatives in          of living are barely being met35. However,
entitled ‘Science and Society’ from the House     Venezuela has been excellent in terms of          specific challenges brought out by disparities
of Lords Select Committee on Science and          quality and numbers of discussions in pub-        relating to poverty, ethnicity and low educa-
Technology, and now there is robust debate        lic forums, but they do not reach enough          tion are undifferentiated between developed
about whether and how the public should be        people to have an impact on public policy.        and developing countries.
involved in setting the strategic agenda of       The public’s low average level of educa-
academic science, as well as their well estab-    tion does not seem to be the limitation,          Public engagement and the media
lished participation in ethical debate.           as Venezuelan people are eager to learn.          “Between the scientist and the public stand
    EDAB, often working in partnership            Rather, the involvement of more scientists        the media”36, and we must work effectively
with the British Neuroscience Association,        with well-honed skills and special funding        with them to defend and uphold science and
the Science Museum, the British Association       for their research are needed. With new ini-      scientific values.
and others, and with strong support from the      tiatives underway thanks to recent political          The media have played a powerful part in
academic and clinical neuroscience commu-         changes, optimism is high for improvements        bringing and translating science to the public
nities, has been influential in raising public    in awareness about public engagement in           arena on an international scale, and neuro-
interest and awareness of neuroscience in the     public policies. ‘Science for the people’ is      science has had its fair share of attention,
United Kingdom. EDAB now has its head-            the phrase that accompanies every letter          although the partnership has sometimes
quarters in a building on London’s Science        and every announcement coming from                been an uneasy one given different profes-
Museum site — which also houses the Dana          the Ministry of Science and Technology.           sional orientations and goals37. Advances in
Centre — and has a busy schedule of varied        Although more is still said than actually         research for HIV/AIDS, Alzheimer’s disease,
science-related events, many of them con-         done, the impact is evident among research-       mental illness, genetics and the development
cerned with neuroscience. Neuroethics has         ers and advocacy groups who have a new            of neurotechnology have all been the focus
become a subject of considerable interest.        feeling of empowerment and an even deeper         of attention, bringing enthusiasm and, at the
    The UK government recently announced          sense of urgency and immediateness. This          same time, trepidation. In one study of the
an ambitious 10-year plan for increasing its      is also evident in Brazil, where a web site       media’s treatment of fMRI results published
total investment in an already wide portfolio     dedicated to neuroscience receives 300 ‘hits’     in the United States and internationally38,
of science innovation to 2.5% of the Gross        per day, with the greatest number on topics       the authors showed how easily deterministic
Domestic Product by 2014, and public              relating to memory and consciousness33.           messages about the human brain can be
engagement is an integral part of this plan.                                                        conveyed.
The European Commission also has relevant                                                               In Switzerland, the important role of the
projects in its current Sixth Framework           “The media have played a                          media was illustrated several years ago by
Programme. These include new initiatives in                                                         the outcome of a referendum against genetic
the ethics of biobanking, human embryonic
                                                  powerful part in bringing                         engineering and, in 2004, by the results of
stem cells and dual-use human research.           and translating science                           one against stem cells. Neither referendum
    In comparison to other international                                                            succeeded: the role of the newspaper, maga-
efforts, public engagement activities in Latin
                                                  to the public arena on an                         zine, radio and TV media in providing a
American countries, such as Venezuela, are        international scale.”                             forum for the views of many scientists cannot
limited. One such effort is being led by                                                            be underestimated.
families and patients with disorders such                                                               In Italy, despite a lack of media central-
autism or Alzheimer’s disease. It calls on            In developing countries, there are unique     ization, many initiatives are advanced by
scientists to become involved in translating      practical barriers to caring for patients with    radio and television programmes. The most
their research findings and directing their       neurological diseases; engaging the public in     popular scientific radio programme, Quark,
research to applied areas. Financial support is   discussions about their ethical implications      includes a topic on the brain every week.
available from the pharmaceutical industry.       is even more difficult. The two main chal-        Another programme, Radio3scienza, regu-
The second effort involves government-run         lenges are disease identification (especially     larly features scientists who speak about new
public campaigns. For example, a campaign         if disease is associated with stigma, as epi-     data appearing in the scientific literature.
on drug prevention has been designed to           lepsy is among certain African populations)       However, despite the vocal support in Italy,
generate responses from the public and            and ethical allocation of limited resources       in the summer of 2005, of a large number of
develop strategies for fighting drug con-         to achieve patient benefit34. Social market-      scientists to abolish a restrictive law regulating
sumption. The third involves initiatives led      ing with mass media campaigns may work            in vitro fertilization, their efforts through the
by groups of academics that obtain most of        for urban areas, but in rural settings grass      media and elsewhere paled in comparison
their support from international agencies         roots efforts aimed at recruiting and educat-     to the campaign mounted by the Catholic
rather than from their own Universities nor       ing community leaders are more powerful.          Church. As a result, limitations stand on
from the Venezuelan government. Most of           The incorporation of education about              creating new frozen human embryos, carry-
these are related to science education and,       certain diseases proactively into culturally-     ing out tests on the embryo before implan-
again, the Brain Awareness Week. Faculty at       appropriate curricula is essential, but success   tation to diagnose genetic diseases, and the
the University of Zulia have also developed       is challenged by a lack of funding, isolation,    scientific use of embryonic material that is
a programme that runs all-year-round to           few research students, a low level of interest    already frozen.


980 | DECEMBER 2005    | VOLUME 6                                                                                    www.nature.com/reviews/neuro
PERSPECTIVES


    Press briefings at professional meet-          Box 2 | Some international initiatives in neuroethics and public engagement
ings, information pages on the Internet,
and modern blogging have also emerged as           United States
solid forces in the effort to bridge gaps in       • Conferences, including Neuroethics: Mapping the Field; Neuroscience and Law; and
neuroscience and neuroethics knowledge.              Neuroscience and Religion
Experience has shown that large lectures           • Special journal issues on neuroethics in Brain and Cognition; Cerebrum; and The American
or town meetings can be unbalanced and               Journal of Bioethics
even become hijacked by extremist views.           • Special research funding, professional and academic events (for example, National
Inefficient as they might seem, smaller              Institutes of Health; Society for Neuroscience; National Alliance for the Mentally Ill)
group sessions that are focused on specific
                                                   • Brain Awareness Week events
questions and action items are more effec-
tive. In this regard, Timpane’s39 urgings for      Canada
a bottom-up deliberative process of public         • Multi-year team grant funding for research
engagement in neuroethics that uses citizen        • Public events on mental health
groups to form consensus recommendations
                                                   • Art exhibitions
are much appreciated. In 2003, Rose40 wrote:
“teach science and teach about science”.           • Bilingual, interactive and public-oriented web sites on the functional organization of
                                                     the brain
Indeed, the movement for public under-
standing is a two-way street where scientists      • Brain Awareness Week events
come to understand the public, and science         Japan
is communicated both in its social context
                                                   • ‘Nurturing the Brain’ research initiative and accompanying special professional and public
and in socially just ways. This ensures that
                                                     events at the Japanese Society for Neuroscience
the requirements for public understanding
                                                   • Japan-promoted Organisation for Economic Co-operation and Development initiatives
of both the research process and the proc-
                                                     and international research networks on literacy, numeracy and life-long learning
ess of generating knowledge and scientific
evidence are met.                                  • Brain Awareness Week events

                                                   Switzerland
Risks of public engagement?
                                                   • Brain Awareness Week events and expanded joint activities, including Festival Science
A risk of public engagement is that of
                                                     et Cité
creating false hopes and expectations by
                                                   • Cafés scientifiques
releasing results too early, especially in
the context of devastating CNS diseases.           Italy
Misunderstandings resulting from oversim-          • Special educational publications
plified scientific facts can lead to activism
                                                   • Newly founded National Institute of Neuroscience with neuroscience literacy among its
(for example, animal rights activists and the        core objectives
early education ‘hot-housing’ movement),
                                                   • Public and academic lectures, and information dissemination through the media
and a sense of obligation to take a particular
social or ethical stance41, even in matters        • Brain Awareness Week events
that are not well understood (for example,         Sweden
nuclear cell transfer or stem cells). New
                                                   • New annual conferences that specifically promote public engagement of neuroscience,
developments in neuroscience can chal-               which involve museums, schools and universities
lenge established values and attitudes, and
                                                   • Brain Awareness Week events
even political views and, as in other areas
of life sciences, forestalling progress can be     United Kingdom
an easy way out. More complex arguments            • Establishment of a national Committee on the Public Understanding of Science
— that failure to act may be at least unethical
                                                   • Initiatives by the European Dana Alliance for the Brain, in partnership with the British
— are frequently lost. It is therefore essential     Neuroscience Association, the Science Museum, the British Association for the
that evaluation of emerging ethical issues in        Advancement of Science and other organizations
neuroscience is based on sound research and
                                                   • Brain Awareness Week events
scholarship. International conferences that
                                                   • Cafés scientifiques
are bringing scholars from the humanities
and social sciences to work together with          European Commission
neuroscientists are positive steps towards         • Current Sixth Framework Programme includes new initiatives in the ethics of biobanking,
advancing awareness of neuroethical issues           human embryonic stem cells, and dual-use human research
and public engagement in the future.
    There is a legitimate civic duty and demo-     Venezuela
cratic gain in engaging the public42,43. Ethical   • Family-led initiatives funded by the pharmaceutical industry, which emphasize
issues should not be left to the experts alone,      translational research
nor be discussed in closed rooms. There is         • Government-run public campaigns such as drug prevention
ample opportunity to capitalize on lessons         • Brain Awareness Week events
from the past. Recent examples, such as the


NATURE REVIEWS | NEUROSCIENCE                                                                                 VOLUME 6 | DECEMBER 2005 | 981
PERSPECTIVES


introduction in Sweden of new reproductive                   Takao K. Hensch is at the RIKEN Brain Science                 22. Ito, M. Nurturing the brain as an emerging research field
                                                               Institute, 2-1 Hirosawa, Wako-shi, Saitama,                     involving child neurology. Brain Dev. 26, 429–433 (2004).
technologies (for instance, pre-implantation                                                                               23. Koizumi, H. The concept of ‘developing the brain’: a new
                                                                                          351-0198, Japan.
genetic diagnosis) and stem cell research are                                                                                  natural science for learning and education. Brain Dev.
                                                                                                                               25, 434–441 (2004).
among them44. Soon after the science news                    Alan Leshner is at the American Association for
                                                                                                                           24. Hensch, T. K. Critical period regulation. Annu. Rev.
                                                                the Advancement of Science, 1200 New York
hit the public arena in Sweden, the ethical                                                                                    Neurosci. 27, 549–579 (2004).
                                                                 Avenue, NW, Washington DC 20005, USA.                     25. Takahashi, T. & Tsukahara, Y. Pocket Monster incident
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independent efforts on the international                                   Neuroscience, University of Turin,                  2005 Workshop on Robo-Ethics in Barcelona [online]
scene and only to the extent that they reflect                        Corso Raffaello 30, 10125 Turin, Italy.                  <http://www-arts.sssup.it/IEEE_TC_RoboEthics/>
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neuroscience. They are summarized in BOX 2.                                                         doi:1038/nrn1808       34. Birbeck, G. Barriers to care for patients with neurologic
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get of our work: the betterment of human-                     (2005).
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                                                       8.     Marcus, S. Neuroethics: Mapping the Field (The Dana
ity worldwide. With an ever-improving                         Foundation Press, New York, 2002).
                                                                                                                           42. Bodmer, W. The Public Understanding of Science (The
                                                                                                                               Royal Society, London, 1985).
understanding of the mechanisms that are               9.     Garland, G. Neuroscience and the Law: Brain, Mind,
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                                                              and the Scales of Justice (Univ. Chicago Press, Chicago,
associated with core human attributes and                     USA, 2004).
                                                                                                                               Defining the Issues in Theory, Practice, Policy (ed. Illes,
                                                                                                                               J.) (Oxford Univ. Press, Oxford, in the press).
values, public interest and concern will only          10.    Illes, J. (ed.) Ethical Challenges in Advanced
                                                                                                                           44. Hansson, M. G. in Preimplantation Genetic Diagnosis
                                                              Neuroimaging (Academic, New York, 2002).
increase about neuroscience and the way that           11.    Donway, W. (ed.) Cerebrum (The Dana Foundation
                                                                                                                               and Embryo Selection (ed. Jónsdóttir, I.) 80–90
                                                                                                                               (TemaNord, Nordic Council of Ministers, Copenhagen, in
new knowledge will be used. More education                    Press, New York, 2004).
                                                                                                                               the press).
                                                       12.    Focus on neuroethics. Am. J. Bioeth. 5 (2), 1–63 (2005).
might not always lead to more freedom and              13.    Obot, I. S., Poznyak, V. & Monterio, M. From basic
                                                                                                                           Acknowledgements
resources for science but, in the global task                 research to public health policy: WHO report on the
                                                                                                                           The generous support of The Greenwall Foundation in under-
                                                              neuroscience of substance dependence. Addict. Behav.
of public engagement in issues of ethics and                  29, 1497–1502 (2004).
                                                                                                                           writing the first neuroethics program at Stanford University is
                                                                                                                           gratefully acknowledged. This work is also supported by a
neuroscience, the only real risk is not to do          14.    Gazzaniga, M. The Ethical Brain (The Dana Foundation
                                                                                                                           National Institute of Neurological Disorders and Stroke (NINDS;
                                                              Press, New York, 2005).
it at all.                                             15.    Kosfeld, M., Heinrichs, M., Zak, P. J., Fischbacher, U. &
                                                                                                                           part of the National Institutes of Health (NIH)) grant to J.I.
                                                              Fehr, E. Oxytocin increases trust in humans. Nature 435,
 Judy Illes is at the Stanford Center for Biomedical          571–572 (2005).
                                                                                                                           Competing interests statement
                                                                                                                           The authors declare no competing financial interests.
Ethics, Department of Radiology, 701 Welch Road,       16.    Damasio, A. Descartes’ Error: Emotion, Reason and the
                                                              Human Brain (HarperCollins, New York, 1994).
      Building A, Suite 1105, Palo Alto, California
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                                  94304-5748, USA.            on the addictions: a prospectus for future ethical and             Online links
                                                              policy analysis. Addict. Behav. 29, 1481–1495 (2004).
Colin Blakemore is at the University Laboratory of     18.    Foster, K. in Neuroethics: Defining the Issues in Theory,    FURTHER INFORMATION
    Physiology, University of Oxford, Parks Road,             Practice and Policy (ed. Illes, J.) 185–200 (Oxford Univ.    Forskning: www.forskning.se/sehjarnan
 Oxford OX1 3PT, UK, and the Medical Research                 Press, Oxford, in the press).                                Organisation for Economic Co-opertaion and
                            Council, London, UK.       19.    Zardetto-Smith, A. M., Mu, K., Phelps, C. L., Hotuz, L.      Development:
                                                              E. & Royen, C. B. Brains rule! Fun = learning =              http://www.oecd.org/department/0,2688,en_2649_
       Mats G. Hansson is at Uppsala University,              neuroscience literacy. Neuroscientist 8, 396–404 (2002).     14935397_1_1_1_1_1,00.html
Department of Public Health and Caring Sciences        20.    Grainger-Monsen, M. & Karetsky, K. in Neuroethics:           Roboethics at Stanford University: http://roboethics.
                                                              Defining the Issues in Theory, Practice and Policy (ed.      stanford.edu
(IFV), Uppsala Science Park, SE-751 85 Uppsala,
                                                              Illes, J.) 297–311 (Oxford Univ. Press, Oxford, in the       The brain from top to bottom: http://www.thebrain.mcgill.ca
       Sweden, and the Department of Learning,                press).                                                      The brain from top to bottom (in French): http://www.
Informatics, Management and Ethics, Karolinska         21.    Okuma, T. The present and future of sleep research in        lecerveau.mcgill.ca
                              Institute, Sweden.              Asia. Psychiatry Clin. Neurosci. 49, 91–97 (1995).           Access to this interactive links box is free online.




982 | DECEMBER 2005      | VOLUME 6                                                                                                              www.nature.com/reviews/neuro

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International perspectives on engaging the public in neuroethics

  • 1. PERSPECTIVES International initiatives SCIENCE AND SOCIETY The United States has been a hub of twenty- first century neuroethics activity, and has International perspectives on hosted various key events that have come to define the field. In 2002, for example, the Dana Foundation BOX 1 sponsored the con- engaging the public in neuroethics ference ‘Neuroethics: Mapping the Field’8. In 2004, the American Association for the Advancement of Science (AAAS) sponsored Judy Illes, Colin Blakemore, Mats G. Hansson, Takao K. Hensch, a meeting on neuroscience and law9 and, in Alan Leshner, Gladys Maestre, Pierre Magistretti, Rémi Quirion and 2005, another on neuroethics and religion. Piergiorgio Strata The Library of Congress sponsored a neuro- ethics meeting called ‘Hard Science – Hard Choices’, also in 2005. With funding from With an ever-increasing understanding to our ‘selves’4. Frontier technology that is The Greenwall Foundation, a special issue of the brain mechanisms associated with able to touch on our personhood5, especially of the journal Brain and Cognition was pub- core human attributes and values, there is in bioscience and information science, is lished devoted to ethical issues in advanced an increasing public interest in the results shaping our future. The public must have the neuroimaging 10 , The Dana Foundation’s of neuroscience research and the ways in power — defined by quality of knowledge journal Cerebrum published a special issue which that new knowledge will be used. and ease of access — to help shape that future. on neuroethics in the Fall of 2004 REF. 11 and Here, we present perspectives on engaging Neuroethics has surfaced, and is here to stay, the US-based American Journal of Bioethics the public on these issues on an international if not for this reason alone. Gone are the days published its own special issue on neuro- scale, the role of the media, and prospects when behaviour was reduced directly to the ethics in 2005 REF. 12. The fierce interest for the new field of neuroethics as both a function of a single gene; instead, behaviour of the American public in their brains, and focus and a driver of these efforts. is increasingly seen to be an emergent prop- growing understanding about brain diseases erty of a distributed information processing that affect millions of people, has been due, in The first chapter in Mary Roach’s book Stiff: system, synapses and neurotransmission6. part, to concerted efforts to share the excite- The Curious Lives of Human Cadavers is Genetics provides crucial bottom-up tools ment of neuroscience discoveries as well as called ‘A Head is a Terrible Thing to Waste’1. with which to investigate inherited mecha- their ethical, social and legal implications. That this book holds a top place on the New nisms linked to illness, and although the Public engagement efforts in the United York Times bestseller list is no surprise. The ethics of genetics and other neighbouring States have generally involved two approaches interest of the public in the workings of the disciplines provide a legitimate starting point to science literacy and action — education body and the human mind is an age-old for thinking about neuroethics, they do not and dialogue. This is consistent with the phenomenon. Depictions of the anatomy suffice. Top-down tools, such as neuroimag- approaches described by the World Health theatres of the sixteenth and seventeenth ing, provided by integrative neuroscience now Organization13 for informed decisions about centuries in Holland by Rembrandt in his have an important role in pursuing knowledge health care, participation in government deci- famous painting ‘The Anatomy Lesson of about what it is to be human, and responding sions in research and treatment of new neuro- Dr. Joan Deijman’, and elsewhere2, show that to the global burden of CNS disease. New logical disease and mental illnesses, critical the dissection of the human form and condi- challenges are defined by both the sheer judgement of neuroscience-related material tion has long been a matter of both public complexity of neuroscience research and the in popular media, and promotion of optimal spectacle and education3. interpretation of data that is bound by culture brain development. The straightforward Today, the curiosity and hope that are and human anthropology7. In anticipation of educational approach encompassing these associated with neuroscience are closely growing areas in which attention might be approaches seeks to increase public under- linked to the explicit ethical, legal and social paid to neuroethics, we explore neuroethics standing and appreciation of neuroscience issues that have come to accompany it. In the priorities across international borders, the role research. The dialogue approach attempts public arena, there is growing recognition of the media and prospects for this burgeoning to engage the public in discussion about and acceptance that the brain is the seat of the field, which are likely to have a far-reaching the significance of neuroscience discovery mind, and thus central to our very humanity, effect on public engagement. for society. NATURE REVIEWS | NEUROSCIENCE VOLUME 6 | DECEMBER 2005 | 977
  • 2. PERSPECTIVES Box 1 | The Dana Alliance to engage in neuroethics activities, especially in the context of the annual Brain Awareness The Dana Alliance, which includes the Dana Alliance for Brain Initiatives in the United States Week, which is now a global event. Many and Canada, and the European Dana Alliance for the Brain, is a non-profit organization. It is Canadian chapters hold outreach events supported by the Dana Foundation, whose membership includes 400 leading neuroscientists, aimed at explaining the impact of recent including 15 Nobel laureates. The Dana Alliance is committed to advancing public awareness discoveries on the treatment of neurological about the progress and benefits of brain research, and to disseminating scientific information disorders and mental illnesses to the public. to the general public in an understandable and accessible fashion. INMHA has observed that public participa- Since the May 2002 conference on neuroethics, co-sponsored with Stanford University, USA, tion is markedly enhanced if target topics are and the University of California San Francisco, USA, and published proceedings, the Dana disease-oriented or particularly provocative Alliance has followed up by sponsoring and hosting symposia, forums and workshops, publishing newsletters and articles, and advancing discussion on this crucial new field in the United States (for example, music and the brain, or sex and Europe. The latest book from the Dana Press is The Ethical Brain by Michael Gazzaniga. and the brain). Public participation is also The Dana Centre at the Science Museum in London is a new focus for public engagement. It notably strong in Canada where graduate provides a lively programme of talks, debates and other events on many aspects of science that students are directly involved in organizing are aimed at an audience of young adults. Because the offices of the European Dana Alliance for the events, including visits to primary and the Brain are housed in the same building, the programme of events has quite a strong emphasis junior high schools. Canadian leadership on neuroscience, but it extends across the whole of science. The Centre has state-of-the-art believes, as others have observed19, that it is facilities for digital communication: James Watson took part in a webcast discussion, and earlier vital to engage the public with neuroethics as this year a transatlantic video-conference on neuroethics was held between the Dana Centres in early as possible in life. London and in Washington around the theme ‘The Ethical Brain’14. Canadian schools lead additional initia- For more information on the Dana Alliance, its grants, outreach activities, and free tives that expose students to various aspects publications, visit www.dana.org. of neuroscience and the career opportuni- ties in the field. One particularly popular venue is a free movie series held at the campus of the Douglas Hospital Research Specific public education efforts have research as well as the societal implications Center in Montreal. At the end of the show, originated from funding agencies, including of neuroscience advances. She also began neuroscientists comment on the movie and many at the National Institutes of Health discussions of how to broach these subjects answer questions from the audience. Movies (NIH), from professional societies, such as with the public. shown during the past 2 years include A the Society for Neuroscience (SfN), and more In The Ethical Brain14, Gazzaniga introduces Beautiful Mind (schizophrenia), Rain Man specialized groups focused on both neurology ethical issues that concern the development (autism), Pollock (alcoholism) and Fourth and psychiatry, and from patient advocacy and expression of human consciousness — of July (post-traumatic stress disorder). groups, such as the National Alliance for the issues that are central to understanding the Both positive and negative messages must Mentally Ill (NAMI). A dramatic effort was nature of humanity and our very existence. be carefully considered with events that the initiative that culminated in the declara- For example, understanding at what develop- feature such popular films, as stereotypical tion of the ‘Decade of the Brain’ in 1990. The mental stage consciousness first emerges has depictions of the mentally ill that “may seem efficacy of the effort was evident, in part, from implications for embryological research and like harmless Hollywood distortions”20 have the ever-growing public acceptance — gained its applications. A study by Kosfeld and his a way of working themselves into society’s after decades of intensive work by scientists, colleagues on neuroendocrine influences of subconscious. In 2004, in partnership with clinicians, and patients and their families human trust provides another example of the Canadian Alliance for Mental Health, — of the fact that severe mental illnesses such ways in which neuroscience research might INMHA organized ‘Mindscape’, an art exhi- as schizophrenia and bipolar disorder are get closer than ever before to elucidating bition presented at the National Art Gallery brain diseases rather than simply symptoms core human traits and values15. These extend of Canada in Ottawa that was aimed at reduc- of weak wills or poor parenting. naturally to other neuroethics issues, includ- ing the stigma and discrimination linked to Dialogue with the public has led to ing issues of personal responsibility in brain brain disease and mental illness. INMHA increasing recognition that advances in diseases that affect behaviour16, vulnerability also actively supports the development of a neuroscience and their application in clinical of individuals with addictions or dementia17, bilingual, interactive public-oriented web site settings could have significant ethical and and privacy18. on the functional organization of the normal legal ramifications that require discussion Canada is following closely on the heels and pathological brain (The brain from top not only among scientists but with all stake- of US leadership in promoting opportunities to bottom, based at McGill University). holders. For example, the US President’s for engaging the public in neuroscience, and This site represents many different levels of Council on Bioethics, which was created by the support for specific research initiatives in expertise and is among the most frequented an executive order in 1995, has devoted some neuroethics, largely through multi-year team by major search engines. effort to issues related to neuroethics. Another grant programme funding, surpasses that In Japan, one of the world’s most educated example is that of Huda Akil, who dedicated of the United States. Led by the Institute of and most rapidly ageing societies, govern- her presidential year (1998) at the American Neuroscience, Mental Health and Addiction ment efforts to promote brain research at College of Neuropsychopharmacology to (INMHA), one of the Canadian Institutes both ends of the life spectrum are being working on ethical issues relating to basic of Health Research, a partnership has been encouraged. In 1995, sleep disorders were and clinical neuroscience. She convened a formed that includes the Dana Foundation, recognized as both a health and a social series of meetings and workshops that con- the Canadian Chapters of SfN and non- problem21. Studies were designed to focus not sidered the ethical conduct of neuroscience government voluntary sector organizations only on the medical features but also on the 978 | DECEMBER 2005 | VOLUME 6 www.nature.com/reviews/neuro
  • 3. PERSPECTIVES characteristics and role of sleep and dreaming Japanese scientists were also the first to publications such as Travel in the Brain30, in Asian culture and philosophy. In 2003, develop MRI techniques for the early detec- and a newly founded National Institute of the research initiative ‘Nurturing the Brain’ tion of amyloid plaque deposits in the brain Neuroscience place neuroscience literacy was launched to focus on the development in vivo well before the onset of dementia28. among their core objectives. Television, and maintenance of ‘normal’ brain function. Similar advances might motivate the design magazines and public lectures by scientists, These new efforts encompass embryonic and of brain–machine interfaces (neural pros- particularly in high schools, further respond postnatal maturation as well as education, theses) beyond primary sensory systems29. As to the Italian public’s interests in and call for adult learning and prevention of mental recently introduced in an inaugural sympos- neuroscience information. In 2004, a meet- decline with ageing22. The honorary presi- ium on ‘Neuroethics of Nurturing the Brain’ ing on the ethics, social, humanitarian and dent of the International Brain Research at the Japanese Society for Neuroscience ecological aspects of robotics was held in Organization, Masao Ito, was among the meeting in 2005, a significant issue in these Sanremo, Italy31. This event was representa- first to embrace the Brain Awareness Week discussions is the definition of an optimal or tive of the growing interest in ‘technoethics’, concept, which has seen increasing par- ideal brain. Both cultural and personal inter- in which the initial emphasis was on neu- ticipation in Japan since its launch almost pretations must be honoured, and neuroethics rally-controlled implantable devices. This 6 years ago. He also promoted current ini- must co-evolve with the science that upholds interest is gaining momentum in other parts tiatives of the Organisation for Economic the importance of individual differences. of Europe (as indicated by events such as the Co-operation and Development (OECD) International Conference on Robotics and to link brain science and education in the Automation 2005 Workshop on Robo-Ethics form of international research networks on “One of the greatest societal in Barcelona32), and in the United States. literacy, numeracy and life-long learning. In Sweden there is a long tradition, upheld One of the greatest societal demands demands in Japan is for by universities, hospitals and research foun- in Japan is for accurate information about accurate information about dations, of advancing public awareness about critical periods in brain development. When the progress and benefits of brain research. is the best time to begin teaching English? critical periods in brain The activities of the Decade of the Brain Or sports? What is the influence of video development.” in the 1990s reached all sectors of society, games, cell phones and ‘anime’ (Japanese and the Swedish Brain Foundation has col- animations) on children? Many of the mod- laborated with local hospitals and schools for ern ills emerging among Japanese youth are With a proactive focus on the overall several years during their Brain Awareness attributed to excessive technology. Staggering understanding and dissemination of infor- Week. Yearly conferences held on a regional increases in violent crimes, vagrancy and sui- mation about brain function and diseases, basis, and publications such as The Brain cide among this sector of the population raise a Brain Awareness Week has been held in of the Child (Royal Swedish Academy of many questions about what can be done for Switzerland every year since 1998 with con- Sciences, 2005) are successful mechanisms in children who burn out (known as ‘kireru’). siderable success. In 2005, a joint ‘Festival this country for disseminating information In response, large cohort studies that will Science et Cité — Brain Awareness Week’ about neuroscience research and discover- follow 10,000 Japanese children during the focused on the theme of consciousness, ies that might alleviate suffering for patients first several years of life have been launched and involved 19 cities with more than 500 with brain diseases. under the rubric of ‘Brain Science and events, including exhibits, films and open In 2005, eight sponsors of research from Education’. This links paediatricians, educa- conferences. Artists-in-residence and actors both the public and private sectors under- tors, parents and scientists on a scale that has stayed in research laboratories or hospitals took an ambitious initiative to specifically not previously been attempted23. Privacy and and produced a theatre piece that was shown promote public engagement in matters confidentiality are key issues for the nascent during the festival. These events, which relating to brain research and neuroscience ethics committees across the country. were co-sponsored by the European Dana in Sweden. The effort includes collaborations Scientists in Japan are at the forefront of Alliance for the Brain (EDAB) in partnership with local science museums and schools. understanding the cellular and molecular with the Swiss Society for Neuroscience and Forskning, a public web site, is a core resource bases of critical periods in brain develop- held under the patronage of the Minister of for stimulating debate and discussion. This ment24. One need only consider the synchro- Education and Research, also led to the crea- project differs from previous ones in Sweden nized, photic seizures that were induced in tion of other structures designed to bridge the in that it includes a comprehensive section almost 1,000 Japanese children by an episode gap between science and the public. Among on neuroethics. Issues that relate to personal of Pokemon to see the relevance of the basic the most innovative are ‘cafés scientifiques’, a responsibility and identity, discussions about biology of neural plasticity to humans25. Stem movement originating in the United Kingdom what is normal and the potential benefits of cell research26 is also facing ethical scrutiny, that provides an informal setting for dialogue enhancing brain function are raised, as are but, in general, the largely Buddhist culture between scientists and the public. the consequences of manipulating complex views the research as a positive contribu- Brain Awareness Week is also a recurring human behaviour. tion to society. Similarly, although Japanese initiative in Italy. Originally undertaken by The strong current commitment to sci- researchers have revealed signature changes several individual scientists and now coor- ence communication in the United Kingdom on functional MRI (fMRI) that accompany dinated on a broader scale by the Italian was launched by the Bodmer Report from second language learning27, concerns about Neuroscience Society, it involves 100 events the Royal Society, the British Association mind reading and neural discrimination, spread across the entire national territory. for the Advancement of Science and the which have emerged in other parts of the The Italian Government was the first in the Royal Institution in 1985. The establish- world, have not penetrated this island world to endorse the US-led initiative for ment of a national Committee on the nation. the Decade of the Brain in the 1990s, and Public Understanding of Science in 1986 NATURE REVIEWS | NEUROSCIENCE VOLUME 6 | DECEMBER 2005 | 979
  • 4. PERSPECTIVES led to a wide range of activities, from an help teachers understand the workings of in neuroscience across the academic com- annual National Science Week to graduate the brain, behaviour that has an impact on munity, government and general public, courses in science communication. A shift brain health, and the basis of individuality and skepticism that brain research can bring of emphasis from didactic communication to and personal style. concrete benefits when minimum standards active dialogue came in 2000 with a report The response to these initiatives in of living are barely being met35. However, entitled ‘Science and Society’ from the House Venezuela has been excellent in terms of specific challenges brought out by disparities of Lords Select Committee on Science and quality and numbers of discussions in pub- relating to poverty, ethnicity and low educa- Technology, and now there is robust debate lic forums, but they do not reach enough tion are undifferentiated between developed about whether and how the public should be people to have an impact on public policy. and developing countries. involved in setting the strategic agenda of The public’s low average level of educa- academic science, as well as their well estab- tion does not seem to be the limitation, Public engagement and the media lished participation in ethical debate. as Venezuelan people are eager to learn. “Between the scientist and the public stand EDAB, often working in partnership Rather, the involvement of more scientists the media”36, and we must work effectively with the British Neuroscience Association, with well-honed skills and special funding with them to defend and uphold science and the Science Museum, the British Association for their research are needed. With new ini- scientific values. and others, and with strong support from the tiatives underway thanks to recent political The media have played a powerful part in academic and clinical neuroscience commu- changes, optimism is high for improvements bringing and translating science to the public nities, has been influential in raising public in awareness about public engagement in arena on an international scale, and neuro- interest and awareness of neuroscience in the public policies. ‘Science for the people’ is science has had its fair share of attention, United Kingdom. EDAB now has its head- the phrase that accompanies every letter although the partnership has sometimes quarters in a building on London’s Science and every announcement coming from been an uneasy one given different profes- Museum site — which also houses the Dana the Ministry of Science and Technology. sional orientations and goals37. Advances in Centre — and has a busy schedule of varied Although more is still said than actually research for HIV/AIDS, Alzheimer’s disease, science-related events, many of them con- done, the impact is evident among research- mental illness, genetics and the development cerned with neuroscience. Neuroethics has ers and advocacy groups who have a new of neurotechnology have all been the focus become a subject of considerable interest. feeling of empowerment and an even deeper of attention, bringing enthusiasm and, at the The UK government recently announced sense of urgency and immediateness. This same time, trepidation. In one study of the an ambitious 10-year plan for increasing its is also evident in Brazil, where a web site media’s treatment of fMRI results published total investment in an already wide portfolio dedicated to neuroscience receives 300 ‘hits’ in the United States and internationally38, of science innovation to 2.5% of the Gross per day, with the greatest number on topics the authors showed how easily deterministic Domestic Product by 2014, and public relating to memory and consciousness33. messages about the human brain can be engagement is an integral part of this plan. conveyed. The European Commission also has relevant In Switzerland, the important role of the projects in its current Sixth Framework “The media have played a media was illustrated several years ago by Programme. These include new initiatives in the outcome of a referendum against genetic the ethics of biobanking, human embryonic powerful part in bringing engineering and, in 2004, by the results of stem cells and dual-use human research. and translating science one against stem cells. Neither referendum In comparison to other international succeeded: the role of the newspaper, maga- efforts, public engagement activities in Latin to the public arena on an zine, radio and TV media in providing a American countries, such as Venezuela, are international scale.” forum for the views of many scientists cannot limited. One such effort is being led by be underestimated. families and patients with disorders such In Italy, despite a lack of media central- autism or Alzheimer’s disease. It calls on In developing countries, there are unique ization, many initiatives are advanced by scientists to become involved in translating practical barriers to caring for patients with radio and television programmes. The most their research findings and directing their neurological diseases; engaging the public in popular scientific radio programme, Quark, research to applied areas. Financial support is discussions about their ethical implications includes a topic on the brain every week. available from the pharmaceutical industry. is even more difficult. The two main chal- Another programme, Radio3scienza, regu- The second effort involves government-run lenges are disease identification (especially larly features scientists who speak about new public campaigns. For example, a campaign if disease is associated with stigma, as epi- data appearing in the scientific literature. on drug prevention has been designed to lepsy is among certain African populations) However, despite the vocal support in Italy, generate responses from the public and and ethical allocation of limited resources in the summer of 2005, of a large number of develop strategies for fighting drug con- to achieve patient benefit34. Social market- scientists to abolish a restrictive law regulating sumption. The third involves initiatives led ing with mass media campaigns may work in vitro fertilization, their efforts through the by groups of academics that obtain most of for urban areas, but in rural settings grass media and elsewhere paled in comparison their support from international agencies roots efforts aimed at recruiting and educat- to the campaign mounted by the Catholic rather than from their own Universities nor ing community leaders are more powerful. Church. As a result, limitations stand on from the Venezuelan government. Most of The incorporation of education about creating new frozen human embryos, carry- these are related to science education and, certain diseases proactively into culturally- ing out tests on the embryo before implan- again, the Brain Awareness Week. Faculty at appropriate curricula is essential, but success tation to diagnose genetic diseases, and the the University of Zulia have also developed is challenged by a lack of funding, isolation, scientific use of embryonic material that is a programme that runs all-year-round to few research students, a low level of interest already frozen. 980 | DECEMBER 2005 | VOLUME 6 www.nature.com/reviews/neuro
  • 5. PERSPECTIVES Press briefings at professional meet- Box 2 | Some international initiatives in neuroethics and public engagement ings, information pages on the Internet, and modern blogging have also emerged as United States solid forces in the effort to bridge gaps in • Conferences, including Neuroethics: Mapping the Field; Neuroscience and Law; and neuroscience and neuroethics knowledge. Neuroscience and Religion Experience has shown that large lectures • Special journal issues on neuroethics in Brain and Cognition; Cerebrum; and The American or town meetings can be unbalanced and Journal of Bioethics even become hijacked by extremist views. • Special research funding, professional and academic events (for example, National Inefficient as they might seem, smaller Institutes of Health; Society for Neuroscience; National Alliance for the Mentally Ill) group sessions that are focused on specific • Brain Awareness Week events questions and action items are more effec- tive. In this regard, Timpane’s39 urgings for Canada a bottom-up deliberative process of public • Multi-year team grant funding for research engagement in neuroethics that uses citizen • Public events on mental health groups to form consensus recommendations • Art exhibitions are much appreciated. In 2003, Rose40 wrote: “teach science and teach about science”. • Bilingual, interactive and public-oriented web sites on the functional organization of the brain Indeed, the movement for public under- standing is a two-way street where scientists • Brain Awareness Week events come to understand the public, and science Japan is communicated both in its social context • ‘Nurturing the Brain’ research initiative and accompanying special professional and public and in socially just ways. This ensures that events at the Japanese Society for Neuroscience the requirements for public understanding • Japan-promoted Organisation for Economic Co-operation and Development initiatives of both the research process and the proc- and international research networks on literacy, numeracy and life-long learning ess of generating knowledge and scientific evidence are met. • Brain Awareness Week events Switzerland Risks of public engagement? • Brain Awareness Week events and expanded joint activities, including Festival Science A risk of public engagement is that of et Cité creating false hopes and expectations by • Cafés scientifiques releasing results too early, especially in the context of devastating CNS diseases. Italy Misunderstandings resulting from oversim- • Special educational publications plified scientific facts can lead to activism • Newly founded National Institute of Neuroscience with neuroscience literacy among its (for example, animal rights activists and the core objectives early education ‘hot-housing’ movement), • Public and academic lectures, and information dissemination through the media and a sense of obligation to take a particular social or ethical stance41, even in matters • Brain Awareness Week events that are not well understood (for example, Sweden nuclear cell transfer or stem cells). New • New annual conferences that specifically promote public engagement of neuroscience, developments in neuroscience can chal- which involve museums, schools and universities lenge established values and attitudes, and • Brain Awareness Week events even political views and, as in other areas of life sciences, forestalling progress can be United Kingdom an easy way out. More complex arguments • Establishment of a national Committee on the Public Understanding of Science — that failure to act may be at least unethical • Initiatives by the European Dana Alliance for the Brain, in partnership with the British — are frequently lost. It is therefore essential Neuroscience Association, the Science Museum, the British Association for the that evaluation of emerging ethical issues in Advancement of Science and other organizations neuroscience is based on sound research and • Brain Awareness Week events scholarship. International conferences that • Cafés scientifiques are bringing scholars from the humanities and social sciences to work together with European Commission neuroscientists are positive steps towards • Current Sixth Framework Programme includes new initiatives in the ethics of biobanking, advancing awareness of neuroethical issues human embryonic stem cells, and dual-use human research and public engagement in the future. There is a legitimate civic duty and demo- Venezuela cratic gain in engaging the public42,43. Ethical • Family-led initiatives funded by the pharmaceutical industry, which emphasize issues should not be left to the experts alone, translational research nor be discussed in closed rooms. There is • Government-run public campaigns such as drug prevention ample opportunity to capitalize on lessons • Brain Awareness Week events from the past. Recent examples, such as the NATURE REVIEWS | NEUROSCIENCE VOLUME 6 | DECEMBER 2005 | 981
  • 6. PERSPECTIVES introduction in Sweden of new reproductive Takao K. Hensch is at the RIKEN Brain Science 22. Ito, M. Nurturing the brain as an emerging research field Institute, 2-1 Hirosawa, Wako-shi, Saitama, involving child neurology. Brain Dev. 26, 429–433 (2004). technologies (for instance, pre-implantation 23. Koizumi, H. The concept of ‘developing the brain’: a new 351-0198, Japan. genetic diagnosis) and stem cell research are natural science for learning and education. Brain Dev. 25, 434–441 (2004). among them44. Soon after the science news Alan Leshner is at the American Association for 24. Hensch, T. K. Critical period regulation. Annu. Rev. the Advancement of Science, 1200 New York hit the public arena in Sweden, the ethical Neurosci. 27, 549–579 (2004). Avenue, NW, Washington DC 20005, USA. 25. Takahashi, T. & Tsukahara, Y. Pocket Monster incident issues became a concern. Special expert ethi- and low luminance visual stimuli: special reference to cal committees were organized specifically Gladys Maestre is at the Institute of Biological deep red flicker stimulation. Acta. Paediatr. Jpn. 40, Research, Department of Neuroscience, University 631–637 (1998). for handling these issues and, as advisory of Zulia School of Medicine, Apartado Postal 26. Uchida, K. et al. Potential functional neural repair with bodies, were successful in guiding political 10.277, Maracaibo Zulia 4002, Venezuela. grafted neural stem cells of early embryonic neuroepithelial origin. Neurosci. Res. 52, 276–286 decisions, legislation and policy-making. Pierre Magistretti is at the Institut de Physiologie, (2005). The benefit of this approach is threatened University of Lausanne, 7 Rue du Bugnon, 27. Tatsuno, Y. & Sakai, K. L. Language-related activations in the left prefrontal regions are differentially modulated by the risk that such organizations, which Lausanne 1005, Switzerland, and the Federal by age, proficiency, and task demands. J. Neurosci., serve as filters between scientists on the one Institute of Technology (EPFL), 1637–1644 (2005). Lausanne, Switzerland. 28. Higuchi, M. et al. 19F and 1H MRI detection of amyloid β hand, and politicians and the general public plaques in vivo. Nature Neurosci. 8, 527–533 (2005). on the other, can lose their accountability to Rémi Quirion is at the Institute of Neurosciences, 29. Mussa-Ivaldi, F. A. & Miller, L. E. Brain-machine those directly concerned with their advice Mental Health and Addiction, Canadian interfaces: computational demands and clinical needs Institutes of Health Research, Douglas Hospital meet basic neuroscience. Trends Neurosci. 26, 329–334 — patients with CNS disease and their Research Centre, 6875 Boulevard LaSalle, Verdun (2003). 30. Levi, G., Meldolesi, J. & Strata, P. (eds) Viaggio nel families. QC H4H 1R3, Canada. cervello (Zadig, Milan, 2004) (in Italian). True public engagement is a lofty goal. Piergiorgio Strata is at the Rita Levi Montalcini 31. First International Symposium on Roboethics [online] <http://www.scuoladirobotica.it/roboethics> (2004). Here, we have only sampled a few of the Center for Brain Repair, Department of 32. International Conference on Robotics and Automation independent efforts on the international Neuroscience, University of Turin, 2005 Workshop on Robo-Ethics in Barcelona [online] scene and only to the extent that they reflect Corso Raffaello 30, 10125 Turin, Italy. <http://www-arts.sssup.it/IEEE_TC_RoboEthics/> (2005). attention to ethical issues intersecting with Correspondence to J.I. e-mail: illes@stanford.edu 33. Herculano-Houzel, S. What does the public want to know about the brain? Nature Neurosci. 6, 325 (2003). neuroscience. They are summarized in BOX 2. doi:1038/nrn1808 34. Birbeck, G. Barriers to care for patients with neurologic New opportunities for greater interaction 1. Roach, M. The Curious Lives of Human Cadavers disease in rural Zambia. Arch. Neurol. 57, 414–417 from both poor and developed countries (2000). (W. W. Norton and Company, London, 2003). 35. Quirk, G. J. Neuroscience in developing countries: 2. Zimmer, C. Soul Made Flesh: The Discovery of the Brain are vital for informing the international neu- — and How it Changed the World (Free Press, New getting around the problems. Int. J. Neurosci. 99, roethics experience overall. Brain Awareness 89–103 (1999). York, 2004). 36. Blakemore, C. Neuroscience and the media: the need Weeks represent a concerted effort, but the 3. Gross, C. G. Rembrandt’s ‘The Anatomy Lesson of for communication. Neuroscience 57, 217–226 (1993). Dr. Joan Deijman’. Trends Neurosci. 21, 237–240 efficacy of these initiatives in terms of pro- 37. Thompson, R. A. & Nelson, C. A. Developmental science (1998). and the media: early brain development. Am. Psychol. moting science engagement, especially with 4. Leshner, A. It’s time to go public with neuroethics. Am. 56, 5–15 (2001). J. Bioeth. 5, 1–2 (2005). respect to neuroethics, needs to be formally 38. Racine, E., Bar-Ilan, O. & Illes, J. fMRI in the public eye. 5. Illes, J., Kirschen, M. P. & Gabrieli, J. D. E. From Nature Rev. Neurosci. 6, 159–164 (2005). assessed. neuroimaging to neuroethics. Nature Neurosci. 6, 250 39. Timpane, J. in Cerebrum (ed. Donway, W.) 100–107 (2003). As neuroscience continues to unlock the 6. Hyman, S. The millennium of mind, brain and behavior. (The Dana Foundation Press, New York, 2004). 40. Rose, S. P. How to (or not to) communicate science. many unknowns of mind and behaviour, we Arch. Gen. Psychiatry 57, 88–89 (2000). Biochem. Soc. Trans. 31, 307–312 (2003). 7. Illes, J. & Racine, E. Imaging or imagining? A neuroethics must always keep in sight the ultimate tar- challenge informed by genetics. Am. J. Bioeth. 5, 5–18 41. Durodié, B. Limitations of public dialogue in science and the rise of new ‘experts’. Crit. Rev. Intl Soc. Polit. Philos. get of our work: the betterment of human- (2005). 6, 82–92 (2004). 8. Marcus, S. Neuroethics: Mapping the Field (The Dana ity worldwide. With an ever-improving Foundation Press, New York, 2002). 42. Bodmer, W. The Public Understanding of Science (The Royal Society, London, 1985). understanding of the mechanisms that are 9. Garland, G. Neuroscience and the Law: Brain, Mind, 43. Illes, J., Racine, E. & Kirschen, M. P. in Neuroethics: and the Scales of Justice (Univ. Chicago Press, Chicago, associated with core human attributes and USA, 2004). Defining the Issues in Theory, Practice, Policy (ed. Illes, J.) (Oxford Univ. Press, Oxford, in the press). values, public interest and concern will only 10. Illes, J. (ed.) Ethical Challenges in Advanced 44. 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Gazzaniga, M. The Ethical Brain (The Dana Foundation National Institute of Neurological Disorders and Stroke (NINDS; Press, New York, 2005). it at all. 15. Kosfeld, M., Heinrichs, M., Zak, P. J., Fischbacher, U. & part of the National Institutes of Health (NIH)) grant to J.I. Fehr, E. Oxytocin increases trust in humans. Nature 435, Judy Illes is at the Stanford Center for Biomedical 571–572 (2005). Competing interests statement The authors declare no competing financial interests. Ethics, Department of Radiology, 701 Welch Road, 16. Damasio, A. Descartes’ Error: Emotion, Reason and the Human Brain (HarperCollins, New York, 1994). Building A, Suite 1105, Palo Alto, California 17. Hall, W., Carter, L. & Morley, K. I. Neuroscience research 94304-5748, USA. on the addictions: a prospectus for future ethical and Online links policy analysis. Addict. Behav. 29, 1481–1495 (2004). Colin Blakemore is at the University Laboratory of 18. 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Press, Oxford, in the The brain from top to bottom: http://www.thebrain.mcgill.ca Sweden, and the Department of Learning, press). The brain from top to bottom (in French): http://www. Informatics, Management and Ethics, Karolinska 21. Okuma, T. The present and future of sleep research in lecerveau.mcgill.ca Institute, Sweden. Asia. Psychiatry Clin. Neurosci. 49, 91–97 (1995). Access to this interactive links box is free online. 982 | DECEMBER 2005 | VOLUME 6 www.nature.com/reviews/neuro