Even if psychosurgery, cognitive enhancement, and behavioral control threaten to change the very notion of human identity, public discussion of the subject has been muted. Issues such as genetics and nanotechnology have provoked committees, reports, and regulations, but brain research has remained in the background of the public consciousness.
Beginning in 2004, to provoke a measured and informed debate before technology truly takes off, the "Meeting of Minds - A European Citizens' Dialogue on Brain Science" gathered 126 laypeople from nine European countries to formulate continent-level recommendations for policymakers and researchers. The method - which we believe was a radical step forward in the growing field of public science consultation - is described in detail on the Meeting of Minds Web site (www.meetingmindseurope.org).
The resulting recommendations, the European Citizens' Assessment, have been presented at the European Parliament. Senior European policymakers, mental health campaigners, and ethicists have praised the...
One: Regulation and Control
The first theme is dominated by two issues: ethical checks and lay input into those checks. The citizens "recommend setting up a pan-European ethical and legal advisory committee ? to stimulate debate and lay down guidelines for brain research. It should draw on the results of national committees, integrate existing European agreements, and include representatives of national ethical committees and of European stakeholder organizations." The new committee would have greater powers than the current advisory group, [which is] the European Group of Ethics in Science and New Technologies. It would aim to emulate the United States, where we understand brain research includes "consideration for ethical aspects throughout the entire process."
One specific ethical concern is that brain imaging could lead to the invasion of privacy, including medical records, potential predispositions to disorders, and even, potentially, privacy of thought. The legal right to remain silent, for example, could be made irrelevant by advances in brain science. Thus the citizens recommend "imposing an informed consent regulation for brain imaging techniques. These techniques should be prohibited for use by the police, or in judicial investigations, or for public security reasons."
"The brain represents our identity, personality, and mind," say the citizens, and that is why they want to be involved in the regulation of brain research and treatment. They "recommend that research universities, science organizations, and pharmaceutical companies organize citizen participation at regional, national, and EU level[s] to give feedback on their research work." They found during their meetings that "scientists often appreciate hearing the opinions of lay people. They can even benefit from this kind of dialogue and feedback on their work."
Two: Normalcy vs. Diversity
Although the panels support research, they are concerned about one consequence: the way in which variations in behavior that were previously regarded as normal are increasingly being labeled as abnormal, and thus become candidates for chemical correction. Several of the seven recommendations under this second theme aim to encourage us to accept and value diversity. Perhaps the most contentious of these is to "Promote research to clarify the range of variations that exist within 'normality' and identify what conditions should be labeled as 'abnormal' in order to avoid unnecessary treatment and reduce the modern tendency to medically treat every departure from the norm."
No doubt this will provoke much discussion, with some arguing that it could lead to the very divisions it seeks to dissolve. But the citizens feel that the medicalization of behavior variation is already - with some help from market forces - well underway, as demonstrated by the number of disorders listed in the Diagnostic and Statistical Manual on Mental Disorders IV. They blame society for this rather than science. They feel that perhaps the only way of halting this trend is by confronting it.
The citizens want to find ways of prioritizing brain research over other areas. Specifically, they recommend increased funding in four areas: "basic and fundamental brain research," "prevention [and] rare brain conditions," "interaction between neurological causes and causes arising from the social and cultural environment in order to try to prevent brain-related disorders," and "alternative treatment techniques," a category that includes mainstream therapies as well as complementary techniques.
Three: Public Information and Communication
The ten recommendations made under this theme reflect a deep concern about the gap between science and society. "We think that scientists should view information-sharing with the public as an integral part of their job," say the citizens, and we should therefore "provide early training for science students in communication skills so that they can inform the lay population without oversimplifying the information; encourage scientists to produce 'popular' accounts of their work; and provide expert help for this."
Many recommendations under this theme explore interesting ways of getting important new messages about protecting the brain to those who could benefit from them. Methods might include "information brochures ? aimed at future parents." Healthcare education programs should "take account of the most recent developments in our knowledge about the brain. An important topic ? could be the influence of lifestyle and diet on the brain." The citizens also want dialogue between the education and brain communities so that the former can benefit from the manifold new insights of the latter.
Four: Pressure from Economic Interests
Two recommendations aim to encourage drug-company research in less lucrative areas. One suggestion is that "patent rules must be revised and linked to the turnover generated by a given drug. Thus, the length of a patent may be significantly extended in the case of a rare condition, whereas in other cases it may even be reduced."
The other recommendation under this theme is: "balancing the pressure exerted by the pharmaceutical industries by taking initiatives which are in the interests of the common good."
Five: Equal Access to Treatment
There is a strong commitment to the idea that affluent countries in Europe should be setting the standard for poorer ones. Regulators should "establish long-term priorities ensuring that all European citizens have nondiscriminatory equal access to equal treatment in the neurological field." Here they were timely, as the European Commission was contemporaneously preparing its Green Paper on "Improving the mental health of the population: Towards a strategy on mental health for the European Union," which is in part concerned with this recommendation. Accordingly, the Meeting of Minds project team has submitted these recommendations to the Commission's consultation process.
Many of the eight recommendations under this theme deal with the quality of life of those who need long-term care and of their caregivers. In addition, there is a strong sense of the preventability of some brain diseases, and frustration that information that could help with this does not get to those who need it. As a result, the citizens recommend that "the EU encourages programs for prevention in family, and education tasks to minimize mental health issues. This should include educational programs directed at families, helping them prevent mental health issues." School, sport, and music have roles in prevention and should be included in these programs, they say.
Six: Freedom of Choice
Citizens made four recommendations related to this issue. One of these is for the "development of a European procedure for nominating trusted representatives for mentally handicapped individuals. Clearly, this is a human rights issue, which seems to need a uniform system of representation for the mentally handicapped throughout the European Union.
A special dilemma within this final theme arises from early diagnosis, a practice that the citizens say can harm some people while helping others: "We ask for the explicit right of citizens to choose whether or not they want to receive early testing or be informed of an early diagnosis."
These are the kinds of insights raised when a group of intelligent lay people is given sufficient time, and top-quality information, for exploring the newfound knowledge of the brain. Scientists and policymakers would do well to engage with them now, before the temperature rises.
Michael Rogers is the former Adviser for Science and Ethics within the European Commission's Bureau of European Policy Advisers. Stef Steyaert is project manager at the Flemish Institute for Science and Technology Assessment and a member of the steering committee of Meeting of Minds. Tinne Vandensande is project officer in the Health Programme of the King Baudouin Foundation, responsible since 2003 for the daily management of the Meeting of Minds ECD initiative. firstname.lastname@example.org