THE ETHICAL CHALLENGES OF THE SHARING OF SCIENTIFIC DATA Opinion no. 2015-30 approved in June 2016 The ethical challenges of the sharing of scientific data -2015-30 2 I

The massive development of IT tools for data collection, measurement and processing has changed the role of data in the production of scientific work. The scientific data sharing movement provided for by international mechanisms such as the Berlin Declaration in 2003 is a response to the need to share results as quickly as possible and overcome legal and technical barriers to the circulation of this data. Similarly open data policies from governments and the European Union have for some years been aimed at the wide dissemination of data acquired with public funding. However not all scientific communities are subject to the same constraints in this respect. The general guidelines can appear to be in conflict with legal restrictions regarding privacy (data protection), copyright law and the obligation of secrecy, or security. Given the complexity of the obligations encountered by researchers, this opinion is intended to reaffirm the need for rational sharing of data and include new requirements for data availability in the assessment of scientific work. The data issue, whether in terms of obstacles to be overcome or limits to openness, has become crucial in the definition of science policy.

II. SELF-REFERRAL

Data has a central role in scientific production in all disciplines. Researchers increasingly need large amounts of data, alongside more modest amounts to explore, view and compare results, validate assumptions or formulate new ones or even to automate the building of new insights through machine learning. Large infrastructures and common platforms building on recent advances in digital technologies are continuously developed for archiving, storing or processing information. Movements promoting open access are therefore becoming critical. Public and private research laboratories increasingly need to come together to coordinate their efforts and reuse data acquired by others.

The stance regarding data sharing and openness differs greatly according to data types and disciplines. In astrophysics or genomics for example, data reconciliation and comparison is clearly a source of new discoveries; any impediment to the flow of results is contrary to fundamental principles of the generalised pooling of insights. For other disciplines, particularly in human sciences, or when major industrial challenges appear, data is often collected individually or under restricted sharing conditions. Depending on the subject of research, data can be shared only with the same embargo as on the publication of results. We should add that raw data is not always stored once it has been processed because this may take up too much space.

The scientific data sharing movement must adjust to the latest government policies on open data which have for some years been aiming at the wide dissemination of data acquired with public funding, with significantly differing objectives and legal and ethical constraints. Public data and scientific data however partially overlap. The HORIZON 2020 European program also enshrines the principle of free access to scientific publications and data. All these general guidelines can appear to be in conflict with legal restrictions regarding privacy (data protection), copyright and the obligation of secrecy, or security. Pressures in respect of research value or duty of confidentiality may also play a role in restricting the dissemination of data. While a large number of researchers support the principle of open data, many feel helpless in the face of constraints that can appear contradictory. This opinion aims to inform researchers on their obligations and the impacts of their choices with respect to the data they collect, share or recycle, and suggest what response scientific institutions should make in respect of these new obligations.

III. ANALYSIS

A. Nature of data and strategic context for openness

Scientific data as considered here applies to all data collected for scientific research1 , namely -empirical, observed, measured -primary data, some of which is not intended to be stored let alone shared; secondary data derived from primary data, annotated, enriched and interpreted, adding value to the original data and possibly involving other actors; metadata that structures, manages and facilitates the access to primary and secondary data and provides information on the conditions of data sharing. This data can consist of digital streams from sensors, or text, graphics, pictorial and multimedia documents. The gap between the status of data and that of publications is moreover tending to narrow with the concept of open science, i.e. dissemination of the data and insights used and developed during the process of elaboration and writing of scientific publications.

Successive agreements and charters have marked the history of the scientific data sharing movement. In 1996 for the first time, researchers involved in sequencing the human genome, signed a set of agreements providing for the basis of a system for data sharing as of its production. Then the first definition of open data was given by the international declaration on open access in Budapest on 14 February, 2002, known under the acronym BOAI (Budapest Open Access Initiative). Note that the clarification of the meaning of various terms that appear here was established gradually. Today the term open data is used for the free availability and use of data obtained using public funding in general. The term data sharing is usually reserved for the movement initiated by research communities affected by the making available of research data on which this opinion focuses. Many other initiatives have followed, such as the 2003 Berlin Declaration on Open Access to Knowledge in the Sciences and Humanities, which was strengthened in 2005. Most scientific bodies including the CNRS (the French national centre for scientific research) have signed these declarations and legitimised this open access culture. The need for reflection on openness and knowledge sharing is included in the 2014 CNRS DIST (scientific and technical information department) strategic plan. We should add that free access to scientific data is now included in the objectives for public research, with this proviso: access does not extend to the dissemination of confidential data, which falls under other legal regimes. Some data used by researchers to conduct studies is sent to them by third parties subject to confidentiality, pursuant to a contractual clause or specific regulations. These conditions can be very restrictive, as in the case of tax data, which was made available for research by the Law of 22 July 2013.

B. Very rapid expansion of the volume of data, diversification of its use in research

Scientific activity relies increasingly on the creation and use of shared multi-source and multi-purpose data infrastructures linked to three types of changes: the development of measurement and raw data capture tools, considerably higher IT capacity for storage and archiving, and collaborative internet networking that allows direct enrichment of online databases and platforms by many contributors.

Currently, a lot of data collected by experimenters is lost. It is estimated that publications provide access to about 10% thereof, the remainder being available on computer hard drives but not used. In some disciplines, valid and important results remain unpublished and a lot of data is underutilised or lost (this is particularly true of data from negative results, which is ignored). For that collected by large tools, the raw data gathered is so massive that it is processed directly online without being stored, such as, for example, the data provided by spatial observation. It is then necessary to indicate the origin of the data constructed from the raw data, even where such data has disappeared. It is also important to recognise the valuable work of staff (researchers, engineers, technicians) who have contributed to the processing of raw data to make it available in a usable form for the rest of their community. This often thankless work is not always valued to the extent of the considerable effort it generally requires.

Large volumes of data may improve our understanding and help in predicting phenomena through the use of machine learning techniques in all scientific fields, particularly in the health sector. However, due to the huge volumes of information involved and, above all, the dimensions of descriptions, such massive processing of data does not generate causal relationships, but correlations, which suggest the existence of causalities, without proving them. New practices are being developed, resulting in a true epistemological revolution often referred to as 'data driven research': starting from already established datasets, algorithms automatically explore fields of assumptions and detect irregularities or unexpected phenomena that differ from known laws. The use of these practices is developing, especially in areas such as seismology or large-scale biology (genomics).

Another advantage of the availability of large amounts of data, obtained thanks to the fantastic possibilities of the internet, is to allow access to the genesis and the various stages of the development of research, showing partial interdependent and scalable results.

Cognitive interactions are manifested in so-called 'knowledge hubs' where several layers of more or less developed knowledge coexist as the dynamic result of a continuous exchange between researchers. All these developments have a heuristic effect on traditional scientific processes.

Access to primary data then becomes crucial to enable the checking of its quality and also to judge the resulting methodology and interpretation. The issue of tracking and scientific evidence therefore also has to be raised in the light of these new practices.

C. Making public data available and scientific data sharing

Unlike the data sharing movement developed by researchers themselves, public open data policies were born outside the scientific community. In Europe, following the Directive on reuse of public sector information, and the Directive creating an infrastructure for spatial information, the majority of countries have opted for a policy aiming to promote public open data. States are important providers of data produced, reproduced, collected, distributed or redistributed by governments as part of their institutional missions. These include demographics, geographical, weather, economic, financial, cultural and tourism data, which are intended to ensure the quality and continuity of public services. In France the remit of ETALAB, a service that manages public open data under the authority of the Prime Minister, is to disseminate data produced with public funds and make it available (almost) free in order to facilitate its reuse in the least restrictive way possible. One of the other objectives of open data is to allow the valuation or the monetisation of this data by creating wealth for companies that use it. Finally, a more collaborative aspect concerns the data made available for communities of citizens or civil society. These policies all aim to create accessible and sharable data repositories and also to promote transparency of knowledge production. In the framework of public open data measures, the principle is statutory and applies legally to all public officials, including employees working in public research.

Policies that promote public open data do not have the same objectives as those of scientific data sharing. To clarify the applicable regimes, it is important to differentiate scientific and public data. Scientific data produced with public funds is, with some exceptions, done so with a view to being made public. Public data is meant to be used as scientific data when it concerns the environment, climate, the state of society or health. Researchers should therefore be able to use Open Data in line with state policies. One example is health insurance which has developed the world's largest database on health: SNIIRAM, which has for decades been supplied with information generated by the management of care provision and hospitalisation in France (20 billion lines of services). Responding to the demand for this data repository, the Caisse Nationale d'Assurance Maladie (National Health Insurance Fund) intends to develop its policy of openness through public interest criteria (including research), depending on the quality of protocols, the need for data access, safety procedures and merits of applicants.

D. Constraints on the processing of personal data

The previous example illustrates the legal constraints surrounding the availability of public data. Health information is sensitive because it can lead to the identification of individuals. The data processing model that was part of in the Computing and Liberties (Informatique et Libertés) law of 6 January 1978, amended in 2004, no longer corresponds to the current modalities of algorithmic processing. The features of the law are no longer adapted to the new contexts of massive data, as reported by the researchers interviewed. Indeed the rapid, open flow of data between researchers upsets the order of the proceedings and makes the stream of data relatively autonomous in relation to their sources or authors. It often becomes impossible to respect the principle of research objectives when assumptions are not developed a priori, the principle of proportionality if the necessary data is not known prior to use, or even the principle of non-conservation, because you cannot destroy the data used at the end of research because of its open access and reuse character.

In many cases the use of data relating to individuals is subject to constraints. Thus viewing using computers, which aims to automatically recognise visual scenes, is subject to image rights. If this relates to an identified or identifiable person, the image of a person is considered as personal data. Computer processing of this data (scanning, diffusion from a website, etc.) must be carried out in compliance with the 'Informatique et libertés' law. The Commission nationale de l'informatique et des libertés (CNIL -National Commission on Computing and Liberties) approves research on face recognition for research purposes, provided this data is not retained beyond the end of the project, except where a request for extension is made. This therefore leads to the paradox whereby experiments with other systems on the same data to compare performance are banned, although this would be the normal scientific process. It seems inconsistent to limit the use of these images in this way, while the goal is to allow the development of the most effective possible operational algorithms.

It has become difficult to apply in all cases the basic principles for the processing of personal data, such as informing people about the future and the use of data, or obtaining their consent. Sometimes the researcher's approach requires obtaining information without the knowledge of the person who is the subject of the investigation. Principles therefore must be put into place to be followed where consent has not been given, such as an undertaking to inform this person post-research. Likewise the issue of consent arises when research focuses on information from data mining of social networks. Though publicly available, this data is considered by the CNIL as personal data. Finally, note that the future European regulation on the protection of individuals with regard to the processing of personal data provides for exemptions from the requirement of consent in research in cases where it serves the overriding public interest and cannot be completed in any other way. For the new digital bill, initial consultations have set priorities defining a legal framework for data mining.

E. Making research data available and the Science Commons movement

In recent years, the birth of data science and the explosion of massive data has led to awareness of the legal and technological barriers that impede the free flow of data, even when scientists aspire to it. Either large databases may be subject to access rights, or the data available in closed formats, requiring proprietary software. Initiatives have encouraged some scientific communities to get together to assert new principles of openness and data availability. In 2005 a community of researchers, aware of the resistance encountered during the implementation of open data policies, launched a global initiative to create Science Commons, with tools and methods (access platforms, model author contracts, etc.) to speed up the flow of results and enable the reuse of data on which they are based. In general today, data to be shared is subject to a minimum questionnaire on the identification of the researcher and the use of the data.

These shareable research platforms facilitate the development of new services such as reuse of research data through policies and tools that help individuals and organisations to make their production available; immediate access to tools (online calculation) through standard contracts for duplicating, verifying and expanding research and also facilitating scientific peer review; the integration of fragmented sources of information through a common, standardised, machine translatable language.

The general movement of openness and data sharing has been facilitated by open archiving policies developed within scientific institutions (ArXiv, 1991). In France, HAL (Hyper Articles en Ligne), established in 2000, was based on 'the model of direct communication between researchers' of their pre-published articles. Its management and tasks, currently being revised, are still to be defined vis-à-vis the archiving of scientific data; in particular the embargo period and open license link, which are decided on by researchers when registering their work, will be included directly on the platform.

A successful example of open networking initiated by researchers is an initiative dating back to 2013, in the field of human biology: the 'Global Alliance for genomics and health'. This is a unified movement of 285 member institutions from 30 countries that have decided to contribute to facilitate the sharing of scientific data by establishing standards, sharing experience and best practices and establishing a framework for responsible data sharing. Similarly another international initiative initiated and piloted in France in the field of biology (BRIF) promotes sharing through better recognition of shared resources and their authors. Disciplines such as Earth and Space Sciences have insisted on other imperatives which also require archiving and the free release of data: perennial observation of natural phenomena involves processes whose time constants can be large compared to human life; the data from these measures are of their essence non-reproducible and are the basis of our knowledge of the world around us, its developments and risks to our societies. As nature is common property, the community of researchers involved and organisations that employ them have an obligation vis-à-vis the public in this respect.

Other types of data platforms sometimes develop outside researchers' initiatives. This is the case in disciplines such as biology and medicine, where publishers require researchers to make their data set available to check the reproducibility of experiments or processes covered by the publication to monitor the results to be published by challenging the data and detecting fraud or errors that may lead to withdrawal. Once collected, if it is not in public databases but remains exclusively in the hands of publishers, this data may constitute for publishers a closed data set that is independent of publications, even though it is only requested in order to monitor results. To prevent this eventuality, access to data relating to a publication required by publishers must not be restricted by copyright imposed by journals. The data must be provided with the article in an associated file but must remain available to researchers for repeat analysis and publication in any journal.

Sharing policies involve informing researchers on the limits of sharing. The data concerned may be unavailable in non-anonymised personal data format, or may be subject to special regimes such as national security and confidentiality, to restrictive contractual clauses or various business interests. In addition, researchers must remain rights holders of the data they have produced or analysed as they are of their publications, if they want to share it or allow reuse. In this case, researchers are strongly advised to put their protectable data under a free license like Creative Commons in order to inform future users of the status of the data. Researchers need to be alerted to the consequences of their choices when they make over their exclusive rights to other parties.

F. Researcher responsibility

Today, despite encouragement at European level and through the CNRS, researchers do not all follow the same practices or suffer the same constraints vis-à-vis their data, as highlighted in the survey conducted at the CNRS with the directors of its laboratories. An embargo of between six months to a year after publication looks to be a minimum time period for making primary data available in the human sciences. In chemistry, probably because of industrial development issues, communication of results and data does not precede the acceptance of publication. Physicists however usually put their articles in open access archives, possibly with additional data, as of submission or even earlier. For the use of processed data that is produced by major physics or astronomy equipment, there is a delay before this data is made available to the whole community. This delay is fixed in advance (between one and two years), giving preference for a limited period to the researchers who have contributed to this equipment.

In general, public researchers are encouraged to pursue the ideal of sharing and peer exchange and participate in the dissemination of data obtained with public funds, provided they abide by the exceptions defined by contractual commitments. Conversely, consortium agreement models involving public and private partners (particularly in competitiveness clusters) are often very restrictive in terms of open data: agreements will now have to be negotiated upstream by public researchers to avoid improper confiscation of untapped data by private partners. Another concern involves decisions regarding the terms of benefits sharing, to prevent powerful institutions or private companies deriving exclusive benefits from data tapping. We have observed in fact that teams funded by public funds or the European Union now disclose their data allowing large private groups to exploit it for their own benefit, irrespective of reciprocity vis-à-vis public researchers.

Researchers are becoming aware that open data -but also software, ontologies and metadata that allow its exploitation -implies a new level of responsibility. They now need to be particularly concerned about the quality of information and data that they offer, as well as the clarity of the accompanying documentation. To allow others to replicate or reuse data, the integrated and interoperable nature of the data must be checked, identifying sources, dates of collection and processing and a detailed examination of the different steps in the creation of data repositories: collection, classification, standardisation, provision, reuse, conservation, destruction or archiving. Thus the organisation and maintenance of interoperable data is becoming fundamental for ensuring the integrity of scientific data in the digital era. These new tasks create new responsibilities among researchers. The implications of these policies in respect of the ethics of research need to be assessed on a case-by-case basis.

In short, faced with this dynamics of the movement of data sharing supported by their supervisory authorities and communities, researchers should be aware of their individual responsibility, deontology and ethics towards the community to which they belong, be aware of international undertakings of the institutions which employ them, know the limits of the exploitation techniques they use regarding the volumes of data they handle and interpretation problems that might result. It is also up to researchers to participate in the definition of best practices specific to their disciplines in terms of data sharing. For these reasons, research institutions must develop new skills that meet the information needs of researchers in terms of their data and create ethics committees on research data by discipline or institution.

H.Tjalsma & J. Rombouts, Selection of research data-Guidelines for appraising and selecting research data, The Hague: Data archiving and Networked services

2011, p.13,14 at http://www.dans.knaw.nl

May 7th 2015.


I. SELF-REFERRAL

This own-initiative ruling is concomitant with an INSU alert following the accusations against Italian scientists after the fatal earthquake in Aquila.

In a society riddled with anxiety and fear of the future (economic crisis, the potential dangers of technology, climate change…) it has become very difficult to communicate about the challenges and risks of an uncertain world. Indeed, what characterises these reasons for anxiety is the complexity of the processes that trigger them and the absence of a set of deterministic proofs to establish definitive elements to aid decision-making.

Scientific and public attention was drawn to the problems of expert assessment in crisis situations by the legal proceedings against Italian geophysicists in the case of the Aquila earthquake of 6 April 2009. To give some background on that particular case, we would note that great progress has been made on the causes and effects of earthquakes, which makes it possible to propose effective strategies for minimising risks, but not to make short-term forecasts on the incidence of earthquakes. This state of affairs is accepted and recognised by everyone, including the plaintiffs in the legal case which recently resulted in very severe sentences.

We would recall that the events in question occurred against a dual background of disturbing seismic phenomena and the publication of unfounded predictions. Following a series of numerous small earthquakes which increased the population's anxiety, a group of scientists met to reach an official position on the situation. A reassuring announcement was then made by a representative of the disaster and emergency services. The plaintiffs accused the scientists of having, through this announcement, given the impression that the earthquake risk was negligible. It should be noted that the level of risk in the region, one of the highest risk areas in Europe, is clearly specified in all the documents made available to the public by the Italian scientific community. 1 The public information meeting cited in the judgement, if it had taken place in France, could have been analysed in the light of the Scientific Assessment Charters available in France. The situation in which the Italian scientists were placed ran counter to several clauses (1, 4, 5 and 6) of the National Assessment Charter adopted in France (see appendix). In the case of the CNRS Charter, clauses 1 ('No confidentiality clause may apply when the assessment made reveals the possibility of a risk, particular relating to the environment or health') and 6 ('Within the framework of an assessment, CNRS can elucidate and evaluate the different options possible for action but is not obliged to make recommendations') could have applied in principle. The dramatic events in Aquila, and the legal consequences that followed, show the need to consider the role of the scientific expert in situations of crisis and the protocols of obligation within which his or her action should be framed.

We live in a time when what scientists say is coming under public challenge. In particular, it seems increasingly hard for scientists to maintain their status as experts in the light of the explosion in immediate methods of communication. Paradoxically, political and democratic life seems to be withering before the powers of certain experts. This is particularly clear in the economic domain, where we are witnessing a form of political withdrawal. The growing influence of groups of self-styled experts, to the detriment of democratic representation, is helping to give experts a negative image among a public deprived of its prerogatives, an image that rebounds on our disciplines.

Within an atmosphere of frustration towards experts whose efficacy is perceived to be little evidenced by recent experience (mad cow disease, asbestos, Aquila, economic crisis, etc.…), there is a plethora of voices clamouring in the public sphere, justified by a relativism according to which every viewpoint is of equal value. Of course, every point of view has the same right of expression in the social arena, but it is right that scientific views should lay claim to particular status, arising from their method of construction, peer review procedures and well-defined ethical practices.

Our perspective is that full value needs to be restored to the analyses of scientists, who are members of society with no special privileges, justified in their opinions solely by scientific pertinence. This pertinence is not measured by the conclusions we may reach in a particular case, but by the method we use. The subject of expert assessment has already been extensively studied; the charters already published (CNRS Charter, National Charter, COMETS ruling) provide responses to many ethical questions raised by expert assessment. Here, we will concentrate on the specific questions associated with situations of crisis.

In a situation of crisis entailing a potential risk, two factors can considerably complicate application of the principles expressed in the charters. First, the client's need to take a decision very quickly; and second the lack of a simple answer to the question asked. In a situation of uncertainty one must be aware of the reason why the scientific position may not apparently be corroborated by the facts, especially when it is expressed in terms of probabilities of occurrence and is therefore open to retrospective criticism. Natural risks, as illustrated in the recent case of the Aquila seismologists, are a good example of the difficulties encountered by experts. COMETS therefore focused its analysis on the questions specifically associated with emergency conditions, on the communication of scientific information characterised by great uncertainties and on the scientist's position in the institutional system and in the public debate associated with emergencies.

II. ANALYSIS

In the presence of a potential natural risk, the provisions of scientific assessment charters, and in particular the need for terms of reference (dealt with in the recommendation of the 2005 COMETS), can become tricky to apply because of the urgent need for a response (crisis situation). Beyond the measures planned, the scientists concerned need to be able to prepare procedures for undertaking assessments which ensure that the ultimate decision-makers receive timely and useful information and the public is guaranteed proper communication.

It is important to ensure that this communication is actually received, even if the sincere conclusions of the assessment, which should be a collaborative effort, are expressed in terms of probabilities of occurrence that depend on models and very large systemic uncertainties. We should not deny the difficulties associated with the fact that a large section of the population and many decision-makers do not understand the probabilistic nature of scientific knowledge. The realities concerned are fundamentally complex and need to be described without excessive simplification. Finally, it should be noted that in many spheres it would be difficult to go very far without encountering profound divergences within the scientific community, because of the existence of opposing views. It will be necessary to identify which methods and interpretations attract sufficient consensus. Scientific discussion is governed by comparisons in which knowledge is recognised as falsifiable; in the public sphere, debate is driven by the confrontation of opposing views and convincing arguments. Experts may be disconcerted by media representations in which the authority of constructed knowledge yields before the power of personal conviction. Scientists therefore need to learn to tame this public space, just as scientific knowledge needs to be accommodated within the public sphere.

Clause 9 of the National Charter (and the CNRS Charter in almost the same terms) stipulates that: "In the event that a risk, in particular an environmental or health risk, should be identified by any one of them, the signatory institutions undertake to investigate it in order to reach an opinion on what measures should be taken in terms of assessment." The principle is certainly a good one, but once again not very compatible with the real world, in the presence of a phenomenon that could indicate the imminence of a disastrous event (e.g. volcanic). Scientists are required to deal with two distinct demands, from the public and from the political decision-makers, the responses to which must be identical in their content. Formulations will need to be adapted. It should be made clear that the content of scientific assessment is only one element of a political decision that entails broader considerations. The role of scientists acting as experts is to provide scientifically relevant, accessible and comprehensive information. The legal position of the expert was amended by Act 2013-316 of 16 April 2013, on the independence of scientific expertise with regard to health and environmental matters and on the protection of whistleblowers.

Finally, beyond the question of emergencies, it is important to consider the ethical questions raised by the exploitation of fear (natural or industrial risks, climate change…) to validate or justify research. The implications of research on safety and protection need to be assessed with realism and sincerity.

III. RECOMMENDATIONS

A. General recommendations

-Fundamental research can contribute effectively to the long-term reduction of risks to the population. The justification for applied research in the sphere of risk must be particularly specific and realistic with regard to its implications for citizen safety, with particular reference to the time needed to make significant progress.

-CNRS needs to be careful to clarify the scope of its action, in particular by separating expert assessment and operational tasks. The organisation needs to be sure that the system of laboratory funding does not make researchers dependent on funding providers who are also potential clients for scientific assessment.

B. Good practice recommendations

-Drawing on the existing charters, and for each type of risk, procedures for undertaking assessment must be prepared in advance of crisis situations. Communication is particularly difficult on complex phenomena, where forecasting requires a probabilistic approach. Spokespersons must be appointed, prepared and trained for that task, because the democratic public arena has different rules and operates on a different register from scientific discussion.

-The exploitation of the conclusions of scientific assessment is not the role of the scientific expert, but of the political decision-maker. This must be made clear to the public in all aspects of communication. Scientists do not need express agreement with decisions that are taken on the basis of an ensemble of information, in which their assessment is only one factor.

-Experts retain the power to monitor the content of their assessments, which should not be distorted in their presentation to the public. Apart from the right of rectification, experts are covered by the general provisions set out in Act 2013-316 of 16 April 2013 on the independence of scientific assessment with regard to health and environmental matters and on the protection of whistleblowers. In application of Clause 2 of this Act, it is also incumbent on the organisations to inform the Ethics Committee established under the Act about the action they take with regard to scientific assessment, and particularly about the ethical codes they establish.

-The scientific content of the assessment should include an account of the technical information and the status of knowledge on the issue. This content must be made public in a timely manner. The experts must as far as possible give their opinion in the ongoing debates in the public sphere. With regard to problems of natural events, the scientific conclusions are often characterised by great uncertainties associated with the dynamics of the system concerned. Communication should seek to make this reality comprehensible to all.

IV. APPENDIX

Clauses quoted from the National Scientific Assessment Charter in France.

Clause 1: "Any scientific assessment task shall entail the writing... either of an agreement signed by both the client and the provider, specifying the purpose, timetable and conditions of the assessment,... or, in the case of an own-initiative assessment, of terms of reference drawn up by the operator concerned and containing the same information."

Clause 4: "The public operator, in accordance with procedures to be determined by itself, shall report any community of interest between the experts employed and the parties concerned by the assessment."

Clause 5: "The assessment report shall state the sources underpinning the conclusions reached in the assessment. The operator shall make them accessible." Clause 6: "The assessment must specify points regarding which the state of existing knowledge is such that a conclusion may not be reached with sufficient certainty. It must also describe areas of controversy, whether or not they are linked with those uncertainties. It may also make relevant comments on the formulation of the question raised."

The reader will find at processoaquila.wordpress.com extensive factual information and detailed analyses compiled by a group of Italian geophysicists (A. Amato, M. Cocco, G. Cultrera, F. Galadini, L. Margheriti, C. Nostro, D. Pantosti , INGV working group for the information on the L'Aquila trial)


Euloge Ibinga

Michel Druet-Cabanac

Marc Harris Dassi

Tchoupa Revegue

Jean Engohang-Ndong

Ulrick Bisvigou

Simon Jonas Ategbo

Pierre-Marie Preux

Edgard Brice Ngoungou

Impact of knowledge, attitudes, and sociocultural factors on school enrollment of children with epilepsy in Gabon

Purpose: Perceptions, beliefs and culture influence attitude towards epilepsy in sub-Saharan Africa. Misconceptions on epilepsy contribute to the persistence of negative attitudes in children with epilepsy parti-cularly on their school enrollment. The aim of the study was to assess knowledge, attitudes, and sociocultural factors affecting schooling of children with epilepsy in Gabon. Meth ods: Teachers and health workers from two urban and four rural localities of Gabon were assessed using a self-administered questionnaire. Results: Overall 1310 subjects filled the survey questionnaire, including 813 teachers and 497 health workers. Knowledge on risk factors and suggestive signs of childhood epilepsy were globally poor. Misconceptions on etiology of epilepsy were significant with contagiousness (27.5%) and demonic possession (16.0%) representing the major prevalent idea about the origin of epilepsy in children. Attitudes of teachers and health workers towards schooling of children with epilepsy were positive (85.0%). However, more than half recommended enrollment of these children in specialized school programs. In multivariate analysis, education level (OR = 1.40; 95% confidence interval 1.01-1.81) and marital status (OR = 1.62; 95% confidence interval 1.18-2.22) were sociocultural factors likely to affect chances of school enrollment of children with epilepsy. Conclusion: Understanding the influence of socio-cultural factors surrounding school enrollment of children with epilepsy could enhance public awareness campaigns about epilepsy and to improve school integration of these children.

Introduction

Epilepsy is a common disorder that occurs worldwide in all age groups and without distinction of gender. There are many superstitious beliefs in African counties about etiology of epilepsy [START_REF] Baskind | Epilepsy care in Zambia: a study of traditional healers[END_REF][START_REF] El Sharkawy | Attitudes and practices of families and health care personnel toward children with epilepsy in Kilifi, Kenya[END_REF][START_REF] Apetse | Perception de l'épilepsie de l'enfant et de l'adulte par la population et le personnel soignant au Togo[END_REF][START_REF] Burton | Behavioural comorbidity in Tanzanian children with epilepsy: a community-based case-control study[END_REF][START_REF] Mushi | Social-cultural aspects of epilepsy in Kilimanjaro Region, Tanzania: knowledge and experience among patients and carers[END_REF]. In some of these countries, traditional healers, teachers, and students have linked epilepsy to spiritual attacks and witchcraft. Furthermore, epilepsy is widely believed to be transmissible by direct or indirect contact with body fluids of patients such as saliva and urine [START_REF] Matuja | Knowledge, attitude and practice (KAP) towards epilepsy in secondary school students in Tanzania[END_REF][START_REF] Njamnshi | Knowledge, attitudes, and practice of Cameroonian medical students and graduating physicians with respect to epilepsy[END_REF]. Therefore, children with epilepsy (CWE) are often stigmatized, withdrawn from school by their parents, or expelled from educational systems by school authorities for fear of contaminating other children [START_REF] Tamale-Ssali | Schoolchildren with epilepsy. The effect of the psychosocial environment on attitudes to the problem[END_REF]. Many recent studies have reported the persistence of strong negative attitudes towards school attendance and social life of children with epilepsy [START_REF] Aydin | Teachers' perceptions in central Turkey concerning epilepsy and asthma and the short-term effect of a brief education on the perception of epilepsy[END_REF][START_REF] Njamnshi | Knowledge, attitudes and practice with respect to epilepsy among secondary school students in the Kumbo West Health District -North West Region-Cameroon[END_REF][START_REF] Mushi | Perceptions, social life, treatment and education gap of Tanzanian children with epilepsy: a community-based study[END_REF]. Despite biomedical advances, negative public attitudes towards CWE are still widely prevalent. The stigma, social attitudes and discrimination against children with epilepsy are often more devastating and harmful than the actual disease itself [START_REF] Brabcova | Familiarity with and attitudes towards epilepsy among teachers at Czech elementary schools: the effect of personal experience and subspecialization[END_REF].

Teachers and health workers (HWs) play a pivotal role in the community and in the life of families in which children with epilepsy may be part of the household. Having not received training in epilepsy, the involvement of teachers cannot be comparable to that of health professionals, however they are involved in education and health awareness for these children. School environment is the place where children spend most of their time during a critical period of their physical, social, and psychological development. Teachers, HWs, and parents often interact for maintaining or removing from school children with certain health disorders including epilepsy. Therefore, obtaining accurate and precise information on social and cultural beliefs around children with epilepsy requires involvement of teachers and HWs. Thus, their inputs may serve as markers for how their community perceives epilepsy in school age children. In addition, there are few knowledge, attitudes and practice (KAP) studies that have been performed simultaneously in these two occupational categories meaning education and health. The aim of this study was to assess the influence of sociocultural factors of teachers and health workers regarding school enrollment of children with epilepsy in Gabon as well as their knowledge, attitudes.

Material and methods

Study site

The study was conducted in two urban and four rural areas of Gabon. The two urban areas were the third borough of Libreville and the city of Mouila while the four rural areas were the localities of Ndende, Lebamba, Moabi, and Mayumba. All study sites were randomly selected. All localities have been previously described [START_REF] Ibinga | Impact of epilepsy on children and parents in Gabon[END_REF].

Study design and procedure

The survey questionnaire developed in this study was designed based on similar studies and well-established approaches on knowledge, attitudes and practices conducted in many other countries [START_REF] Njamnshi | Knowledge, attitudes, and practice of Cameroonian medical students and graduating physicians with respect to epilepsy[END_REF][START_REF] Birbeck | Zambian teachers: what do they know about epilepsy and how can we work with them to decrease stigma?[END_REF][START_REF] Dantas | Knowledge and attitudes toward epilepsy among primary, secondary and tertiary level teachers[END_REF]. Briefly, questions commonly used to study beliefs, attitudes, and practices were maintained. However, we added questions pertaining to risk factors and suggestive signs of childhood epilepsy. A particular emphasis was put on signs referring to spasms and myoclonus. We emphasized questions on school attendance and school registration records. The questionnaire was given to 50 randomly selected adult students on the campus of the University Omar Bongo in Libreville, Gabon. That initial and pilot test was conducted in order to correct wording in the formulation of questions in a way that would prevent any misunderstanding and thus prevent discrepancies between the intention of the question and the answer given by surveyed subjects. The possible answers to questions were: "yes; no; I do not know". The final survey questionnaire had 19 items: eight items investigated knowledge and beliefs (Q1-8); seven items (Q9-15) investigated attitudes on seeking care, three questions (Q16-17) investigated attitudes of respondents toward school enrollment of CWE and the last question (Q19) addressed practices related to the management of a seizure event occurring in a child. The survey questionnaire is attached in the appendix.

The work performed here was a cross-sectional study using a selfadministered survey questionnaire. It was conducted from January 2013 to October 2013 at schools and health facilities located in the six selected study sites. At each occupational site being surveyed, all respondents received the survey questionnaire, which was requested to be completed on the same day before leaving their work, in order to limit communication between respondents. While collecting the completed questionnaires, we verified that all questions had been answered. Uncompleted or partially completed questionnaires were excluded from final analysis.

Data management and analysis

Data was analyzed using Stata, version 12 (Stata Corp., College Station, TX, USA). The sociocultural characteristics including age, years of professional experience, and size of family were categorized and frequencies were determined. Descriptive analyses were done using percentages for categorical variables and means ± standard deviations for continuous variables. Stepwise backward logistic regression was performed to determine effects of sociodemographic, perception, beliefs on contagiousness, on demonic origin and on malediction origin of epilepsy demonic origin on school enrollment of children with epilepsy. Independent variables were age, gender, zone of residence, occupation, experience, marital status, family size, level of education, type of school, and school enrollment acceptability. In all analyses the threshold for statistical significance was set at 0.05.

Ethical issues

Administrative authorization was obtained from the Ministry of Public Health of Gabon. That administrative authorization was then transmitted to local authorities on study sites (schools and health care facilities). In all instances, health center Managers and school Managers or Directors of institutions gave their consent for execution of the study on the site. Participation in the study was voluntary and a verbal consent was obtained from each respondent.

Results

Demographic characteristics

The survey questionnaire was administered to 1553 teachers and 763 HWs of which 945 responses were obtained from teachers while 577 responses were obtained from HWs. A total of 212 questionnaires were uncompleted including 132 from teachers and 80 from HWs. In fine, 1310 completed and valid survey questionnaire were obtained and analyzed. 912 (69.6%) of respondents lived in urban areas. It was also observed that 96.5% of all respondents had completed at least secondary school. Demographic and sociocultural characteristics of respondents are reported in Table 1 while data collection procedure is summarized in the Fig. 1.

Knowledge and beliefs of teachers and HWs about childhood epilepsy

About suggestive signs of epilepsy in children, less than half of respondents recognized some suggestive signs including sudden and brief flexion of the neck and limbs (37.2%), and the falling of objects held by the child (33.3%). Some respondents (0.4%) reported to not know whether a child with epilepsy necessarily had generalized tonicoclonic seizures. Loss of consciousness remained the most recognized suggestive sign of childhood epilepsy among the respondents (58.2%). Knowledge of risk factors that could increase chances of developing childhood epilepsy was limited in the surveyed population sample. As shown by recorded results, only 39.8% of respondents knew that cerebral infections could trigger epilepsy in children and only 24.9% of respondent reported that brain tumors could be a risk factor associated with occurrence of epilepsy in children.

Negative beliefs were prevalent among the participants. Over one quarter of respondents (27.5%) believed that epilepsy is contagious and 16.0% thought that epilepsy is related to demonic possession. Table 2 summarizes knowledge and beliefs of teachers and HWs about childhood epilepsy.

Teachers and HWs attitudes and practices towards childhood epilepsy

Our investigation shows that 85.0% of teachers and HWs surveyed would enroll children with epilepsy in school. However, 56.2% of respondents recommended enrollment of these children in a specialized school designed for children with intellectual disabilities. Attitudes towards seeking care for children with epilepsy were good. Nonetheless, nearly 40% of respondents reported to not know that epilepsy could be treated either by traditional medicine or modern medicine. Attitudes and practices towards childhood epilepsy are reported in Tables 3 and4.

Sociocultural factors surrounding schooling of children with epilepsy

Gender, occupation, and beliefs such as epilepsy is related to "malediction" or epilepsy is a "demonic disease" were not associated with school enrollment of CWE. Other sociocultural characteristics such as age of respondents, area of residence, and years of professional experience were shown to be associated with chances of school enrollment of CWE. Univariate and multivariate analysis are reported in Tables 5 and6 respectively.

Discussion

Our study showed that gender and beliefs related to epilepsy were not associated with the schooling of the children with epilepsy; specialized schools were the most recommended for their schooling and the level of education and marital status would positively influence the schooling of the children with epilepsy.

Our study revealed that attitudes towards school enrollment of CWE were independent of gender, occupation, perception of epilepsy as being a demonic or a contagious disease. Similarly, there was no relation between school enrollment of CWE and the perception of that health condition as being curse-related. These results show the homogeneity of a population that shares the same beliefs, the same social and cultural experience, regardless of their level of education and their professional backgrounds.

In our study, more than three quarter of respondents resided in urban areas as observed in other African countries [START_REF] Akpan | Teachers' knowledge and attitudes towards seizure disorder: a comparative study of urban and rural school teachers in Akwa Ibom State, Nigeria[END_REF][START_REF] Mustapha | Knowledge, attitudes and perceptions of epilepsy among secondary school teachers in Osogbo South-West Nigeria: a communitybased study[END_REF]. This result was in agreement with the unequal distribution of infrastructures between urban and rural areas in the country. Thus, the distribution of human resources follows that of infrastructures. In Laos, out of 50 selected hospitals, including 11 provincial hospitals, 9 District hospitals and 30 village health facilities, provincial hospitals contained 52% health workers [START_REF] Harimanana | Is insufficient knowledge of epilepsy the reason for low levels of healthcare in the Lao PDR?[END_REF].

Knowledge of respondents about epilepsy in children was fair. Overall, the suggestive sign of epilepsy that respondents (both teachers and HWs) would easily recognize in epileptic children was the brief loss of consciousness. This sign might frighten teachers and HWs who would perceive this as a risk of death. Our results are in agreement with several results of studies from developed and developing countries. Indeed, despite a good level of education, in Italy, the level of NA: not applicable.

knowledge of teachers about epilepsy causes was not different from that of the general population [START_REF] Mecarelli | Knowledge and attiyudes toward epilepsy among primary and secondary schoolteachers in Italy[END_REF]. A similar observation was made in a study involving nursing students and laboratory technicians in Cameroon and that of health workers in Laos and in Zambia [START_REF] Njamnshi | Knowledge, attitudes and practice with respect to epilepsy among secondary school students in the Kumbo West Health District -North West Region-Cameroon[END_REF][START_REF] Harimanana | Is insufficient knowledge of epilepsy the reason for low levels of healthcare in the Lao PDR?[END_REF][START_REF] Chomba | Zambian health care workers' knowledge, attitudes, beliefs, and practices regarding epilepsy[END_REF], However, the rate of respondents who thought that head trauma, brain infections and brain tumors were risk factors for epilepsy was higher than that observed in Zimbabwean teachers and Indian school teachers and Italian teachers from Sicily while it was similar to that of Nigerian teachers and less than that reported in Italian primary school teachers [START_REF] Chomba | Zambian health care workers' knowledge, attitudes, beliefs, and practices regarding epilepsy[END_REF][START_REF] Mielke | Knowledge and attitudes of teachers towards epilepsy in Zimbabwe[END_REF][START_REF] Thacker | Knowledge awareness and attitude about epilepsy among schoolteachers in India[END_REF][START_REF] Ojinnaka | Teachers' perception of epilepsy in Nigeria: a community-based study[END_REF][START_REF] Mecarelli | Epischool Collaborative Group of the Lega Italiana contro l'Epilessia (LICE). An educational campaign toward epilepsy among Italian primary school teachers: 1. Survey on knowledge and attitudes[END_REF][START_REF] Buccheri | Perception of, attitudes toward, and knowledge of epilepsy among teachers and high school and college students in Sicily[END_REF]. Knowledge on perinatal risk factors, and some suggestive signs of epilepsy such as spasms, focal seizures remained limited. About the treatment, an equal rate of respondents (42.8%) thought that epilepsy could be treated by modern or traditional medicine. This rate was higher than the one reported in Togo, where only 30% of caregivers recognized the possibility to cure epilepsy using medicines [START_REF] Apetse | Perception de l'épilepsie de l'enfant et de l'adulte par la population et le personnel soignant au Togo[END_REF]. Beliefs are still dominated by misconceptions such as the contagiousness of epilepsy, the action of a demonic spirit and confusion between epilepsy and psychiatric disorders. Cultural influence, low use of individual reading, lack of training of HWs, and lack of awareness about epilepsy could explain negative beliefs.

In our study, even if more than half of the respondents recommended specialized school programs for children with epilepsy, attitudes of teachers and HWs towards school enrollment were positive. Teachers and HWs are potential parents of CWE, they would not object to enroll their children, nor to withdraw them from school. Enrollment attitude was similar to what had been observed in England, Greece and in Korea, while they were opposed to those found in Nigeria and Sudan where more than half of the teachers would not desire to enroll children with epilepsy [START_REF] Bannon | Teachers' perceptions of epilepsy[END_REF][START_REF] Kaleyias | Knowledge and attitude of the Greek educational community toward epilepsy and the epileptic student[END_REF][START_REF] Lee | Familiarity with, knowledge of, and attitudes toward epilepsy among teachers in Korean elementary schools[END_REF][START_REF] Alikor | Childhood epilepsy: knowledge and attitude of primary school teachers in Port Harcourt, Nigeria[END_REF][START_REF] Babikar | Knowledge, practice and attitude toward epilepsy among primary and secondary school teachers in South Gezira locality, Gezira State, Sudan[END_REF].

Despite good practices when facing a seizing child, we found a persistence of harmful practices such as putting an object in the mouth of the child to prevent tongue biting. Respondents seem to be unaware of the danger of putting an object between the teeth of a seizing child. HWs have several responsibilities including diagnosis, treatment, and to inform patients and their parents. Failing to know the role of perinatal risk factors of childhood epilepsy is a source of mismanagement and diagnostic delay [START_REF] O'callaghan | The effect of lead time to treatment and of age of onset on developmental outcome at 4 years in infantile spasms: evidence from the United Kingdom Infantile Spasms Study[END_REF][START_REF] Auvin | Diagnosis delay in West syndrome: misdiagnosis and consequences[END_REF]. Upon diagnosis of epilepsy, HWs may be able to provide correct information to parents and to reduce comorbidities through proper care. Conversely, diagnosis delay could lead to persistence of incorrect beliefs and cause parents to seek care through traditional healers and priests to appease their anxiety. The lack of proper knowledge among HWs about childhood epilepsy would inevitably have a negative impact on information and health promotion. Awareness and knowledge level must be optimized among caregivers because the lack of awareness and knowledge in caregivers would contribute in the perpetuation of misconceptions in the community.

In the multivariate analysis, education level and marital status were predictive of socio-cultural factors of schooling of CWE. Studies have shown that people with a high level of education are more likely to The child would take drugs alone 11 (0.8) The child would take drugs under the supervision of a sibling 19 (1.5) The child would take drugs under the supervision of a parent 1,280 (97.7) How would you verify that the child has taken the prescribed drugs? By asking the child 12 (0.9) By checking the amount of remaining drugs 61 (4.7) By making sure drugs are taken under the supervision of a parent

Table 4

Attitude of teachers and health workers towards school enrollment and management of seizing CWE (n = 1,310). NA: not applicable.

enroll CWE compare to people with low education level [START_REF] Mecarelli | Knowledge and attiyudes toward epilepsy among primary and secondary schoolteachers in Italy[END_REF][START_REF] Owolabi | Epilepsy and education in developing countries: a survey of school teachers' knowledge about epilepsy and their attitude towards students with epilepsy in Northwestern Nigeria[END_REF]. Educated people would improve their knowledge through several sources including television, newspapers, and medical visits, thereby gradually correcting their understanding of the disease and shifting away from prevalent community beliefs. However, because cultural beliefs improve slowly, their evolution would require much time and maintaining awareness campaigns becomes therefore necessary [START_REF] Apetse | Perception de l'épilepsie de l'enfant et de l'adulte par la population et le personnel soignant au Togo[END_REF].

In our study, we show that marital status would influence positively schooling of CWE. This result could be explained by the difficulty in a single-parent household to care for a CWE with regard to the impact of this disease in the lives of parents and siblings [START_REF] Ibinga | Impact of epilepsy on children and parents in Gabon[END_REF].

The residence and type of school seemed not to be in favor of schooling of CWE. Indeed, school structures are established according to the population density. In Gabon, public schools are the most common, followed by denominational schools (Catholic and Protestant). Given the strong demand of specialized school to enroll CWE, it is not surprising that in the absence of these structures, and in absence of laws for equal education opportunity, CWE are not given the same chance of enrollment. Therefore, their enrollment would remain random and vary depending on attitude of parents, perception, and sensitivity of the head teacher.

Interestingly, age of respondents did not appear to be favorable to school enrollment of CWE as if younger respondents were less apprehensive about epilepsy in school age children compared to their older counterparts. Surprisingly, there was no significant difference between teachers and health workers as of their opinion towards school enrollment of CWE. Overall, we show that years of experience in the job is a factor affecting chances of school enrollment of CWE. According to our data, the longer the experience in the job, the least likely the respondent would support school enrollment of CWE. That observation is contradictory to that made in previous studies conducted in teachers, studies in which it was demonstrated that teachers with longer experience were more likely to accept children in their class and had good knowledge of epilepsy [START_REF] Mecarelli | Knowledge and attiyudes toward epilepsy among primary and secondary schoolteachers in Italy[END_REF][START_REF] Bishop | Teachers' attitudes toward students with epilepsy: results of a survey of elementary and middle school teachers[END_REF][START_REF] Buccheri | Perception of, attitudes toward, and knowledge of epilepsy among teachers and high school and college students in Sicily[END_REF]. The discrepancy observed in our study may be related to the inclusion of two professional groups in which experience could differently affect the perception of school enrollment of CWE. Health workers who have experienced neurocognitive changes in the course of epilepsy could be refractory to get CWE enrolled in schools. This approach would balance that of teachers who will get to know better the children in their schools.

This study presents some limitations: based on self-administered questionnaire, responses were most likely to be subjective. Therefore, this could cause skewed data. Furthermore, it was difficult to obtain data from non-respondents.

Conclusion

Insufficient knowledge about epilepsy, persistence of misconceptions, and school inaccessibility are obstacles to the development and social integration of CWE. Since teachers are at the front stage to see epileptic seizures in children, particularly absence seizures, proper information should be provided in order to improve their ability to react appropriately. An assessment performed by a multidisciplinary team involving Family Physicians, Pediatricians, Psychologists, and Child Psychiatrist seems to be essential to secure a proper development and social integration of CWE. Such assessment should be done prior to school enrollment. Furthermore, a monitoring during school sessions would allow to better adapt school access to individual child neurocognitive profile and would allow a better understanding of the need for specialized schools in Gabon.

Fig. 1 .

 1 Fig. 1. procedure of the data collection among teachers and HWs, Gabon, 2013.

Table 1

 1 Demographic and sociocultural characteristics of surveyed teachers and health workers in Gabon, 2013.

	Characteristics	Respondents
		Number (%) or mean ± SD
	Occupation
	Teachers	813 (62.1)
	Health workers	497 (37.9)
	Age	40.1 ± 8 years *
	Professional Experience
	Experience ≤ 10 years	744 (56.8)
	Experience > 10 years	566 (43.2)
	Gender
	Male	554 (42.3)
	Female	756 (57.7)
	Family size
	Children ≤ 4	785 (60.0)
	Children > 4	525 (40.0)
	Residence
	Urban	912 (69.6)
	Rural	398 (30.4)
	Education level
	Primary	46 (3.5)
	Secondary	658 (50.2)
	University	606 (46.3)

Table 2

 2 Knowledge and beliefs of teachers and HWs about childhood epilepsy, Gabon, 2013 (n = 1310).

	Questions	Respondents
		Yes	No
	At what age can occur epilepsy in a person?
	At any age	836 (63.8)	NA
	In adulthood	11 (0.8)	NA
	In childhood	256 (19.6)	NA
	I don't know	207 (15.8)	NA
	Is any child who has a seizure event always epileptic?	30 (2.3)	1,280(97.7)
	Is the entire body necessarily shaking during	791 (60.4)	513 (39.2)
	epileptic seizure episodes in a child?
	Which of the following signs may suggest an epilepsy
	episode in child?
	Laughter	83 (6.3)	1,227 (93.7)
	Sudden and brief flexion of the neck and limbs	500 (37.2)	810 (61.8)
	Brief and rhythmic muscle contractions	311 (23.7)	999 (76.3)
	Falling of objects held by the child	436 (33.3)	874 (66.7)
	Brief loss of consciousness	763 (58.2)	547 (41.8)
	Is epilepsy a contagious disease?	360 (27.5)	379 (28.9)
	If epilepsy is contagious, how is it transmitted?
	Through saliva	281 (21.5)	1,029 (78.5)
	By eating in the same plate	76 (5.8)	1,234 (94.6)
	Through urine	24 (1.8)	1,286 (98.2)
	By sleeping on the same bed	4 (0.3)	1,306 (99.7)
	By simple touch	5 (0.4)	1,305 (99.6)
	Through the drool during seizures	265 (20.2)	1,045 (79.8)
	Which of the following situations can cause epilepsy
	in children?
	Born in a state of apparent death	174 (13.3)	1,136 (86.7)
	Born premature	63 (4.8)	1,247 (95.2)
	Forceps delivery	116 (8.8)	1,194 (91.2)
	Shaking the baby	94 (7.3)	1,216 (92.8)
	Head trauma in a newborn, infant or a child	398 (30.4)	912 (69.6)
	Cerebral infections in a newborn, an infant or child	552 (39.8)	788 (60.2)
	Hydrocephalus	187 (14.3)	1,123 (85.7)
	Brain tumors	326 (24.9)	941 (75.1)
	In your opinion how do you consider epilepsy?
	Curse	82 (6.3)	1,228 (93.7)
	Mental retardation	86 (6.6)	1,224 (93.4)
	Demonic possession	210 (16.0)	1,100 (84.0)
	Psychiatric disorder	241 (18.4)	1,069 (81.6)
	Brain disease	571 (43.6)	739 (56.4)
	Neurologic disease	760 (58.0)	550 (42.0)

Table 3

 3 Attitude of teachers and health workers towards care of children with epilepsy (n = 1,310).

	Questions	Yes response
		numbers (%)
	How would you advise parents of a child with epilepsy to seek
	treatment?
	To consult a pharmacist	03 (0.2)
	To consult a physician	1,030 (78.6)
	To consult a traditional healer	128 (9.8)
	To consult a priest or pastor	87 (6.7)
	I don't know	62 (4.7)
	Which of the following would you recommend as first intention
	consultant?
	A pharmacist	8 (0.6)
	A physician	1,121 (85.6)
	A traditional healer	105 (8.0)
	A priest or pastor	76 (5.8)
	Can childhood epilepsy be cured using traditional medicine?	560 (42.8)
	Can childhood epilepsy be cured using modern medicine?	560 (42.8)
	How long could the treatment of epilepsy last?
	About a week	06 (0.5)
	One month	14 (1.1)
	Several months	212 (16.2)
	Several years	330 (25.2)
	Life time	308 (23.5)
	I don't know	440 (33.5)
	How would you administer the treatment to a child with
	epilepsy?

Table 5

 5 Univariate analysis of sociocultural characteristics in relation to school enrollment of children with epilepsy (n = 1310).

	Characteristics	School enrollment (number (%))
		Yes	No	P value
	Age
	Age ≤ 39 years	630 (88.1)	85 (11.9)
	Age > 39 years	484 (81.3)	111 (18.7)	0.010
	Gender
	Male	467 (84.3)	87 (15.7)
	female	647 (86.6)	109 (14.4)	0.590
	Residence
	Urban	794 (87.1)	118 (12.9)
	Rural	302 (80.4)	78 (19.6)	0.002
	Occupation
	Teachers	691 (85.0)	122 (15.0)
	Health workers	423 (85.1)	74 (14.9)	0.954
	Experience
	Experience ≤ 10 years	646 (86.8)	98 (13.2)
	Experience > 10 years	468 (82.7)	98 (17.3)	0.010
	Family size
	Family size ≤ 4 children	684 (87.1)	101 (12.9)
	Family size > 4 children	430 (81.9)	95 (18.1)	0.009
	Marital status
	Single	434 (81.0)	102 (19.0)
	Couple	680 (87.9)	94 (12.0)	0.001
	School level
	Primary	35 (77.8)	10 (22.2)
	Secondary	539 (81.8)	120 (18.2)
	University	540 (89.1)	66 (10.9)	< 0.001
	Contagiousness
	Yes	294 (81.7)	66 (18.3)
	No	322 (85.0)	57 (15.0)
	Don't know	498 (87.2)	73 (12.8)	0.060
	Malediction
	Yes	67 (81.7)	15 (18.3)
	No	1,047 (85.3)	181 (14.7)	0.300
	Demonic
	Yes	174 (82.9)	36 (17.1)
	No	940 (84.3)	160 (14.5)	0.330
	Type of school
	Catholic	126 (92.6)	10 (7.4)
	Protestant	42 (89.4)	05 (10.6)
	Public	272 (97.1)	08 (2.9)
	Private	44 (91.7)	04 (8.3)
	Specialized	593 (80.67)	143 (19.4)
	Don't know	37 (58.7)	26 (41.3)	< 0.001
	Enrollment acceptability
	Yes	876 (94.8)	48 (5.2)
	No	119 (52.9)	106 (47.1)
	Don't know	119 (73.9)	42 (26.1)	< 0.001

Table 6

 6 Sociocultural variable predictive of school enrollment of CWE in Gabon, 2013.

	Sociocultural characteristics	Schooling of CWE
		Odd Ratio	95% CI	p value
	Residence	0.63	0.45-0.87	0.006
	Age	0.66	0.48-0.92	0.015
	Education level	1.40	1.01-1.81	0.037
	Marital status	1.62	1.18-2.22	0.003
	School type	0.58	0.50-0.69	< 0.001

CI: Confidence interval; CWE: children with epilepsy.

Acknowledgements

Authors thank all physicians, nurses and teachers who kindly accepted to participate in the study. We also thank the University of Limoges and Limousin Regional Council for the scholarship granted to the PhD and BGFI-Bank Foundation for assistance provided to the student for collecting data.