A new Italian information resource on Bioethics
and its integration with other European systems

Maurella Della Seta and Scilla Pizzarelli
Documentation Service 
Istituto Superiore di Sanità 
Viale Regina Elena, 299
00161 Rome, Italy
tel. +39 06 4990 2426/2520
e-mail:  maurella.dellaseta@iss.it
             scilla.pizzarelli@iss.it

Abstract

The increasing interest for bioethical issues concerned with biomedical research and scientific discoveries brings about a great demand for easier and feasible access to information on this matter. Access to reliable and up-to-date information is essential  for participation in ethical debates concerning life sciences, taking place at a national, European and international level. In this context, the Istituto Superiore di Sanità (ISS) in 2001 launched a research project aiming at the creation of a web site entirely devoted to bioethical information, through the joint work of bioethics experts, physicians and information professionals. The site is called SIBIL (Sistema Informativo per la Bioetica In Linea – Online Bioethics Information System) and it is available at the URL www.sibil.iss.it. The site provides an updated overview of informative resources and educational activities in the field of bioethics, with links to the main sources of information. SIBIL core is represented by the homonymous database, recording and indexing all bioethical literature produced in Italy since 1995 (www.bioetica.iss.it). A survey  of advanced informative resources in the different European countries was carried out in the  SIBIL project framework. Contacting the leading institutions in this field, lead to the idea of promoting a network of networks connecting the already existing resources, linking together the major European documentation centres on bioethics.

Introduction

The recent developments in science, medicine and technology have led to a number of ethical dilemmas requiring easy and feasible access to information on these issues. Information tools availability can ensure the exchange of knowledge and ideas, encouraging moral reflection and stimulating research in areas of such concern. 
Bioethics has been defined by the Kennedy Institute of Ethics (USA) - KIE  “a field of study concerned with value questions that arise in health care, in the professional patient relationship and in biomedical research”. According to the same source, the concept of bioethics refers to areas such as medical ethics, focused on rights and duties of health professionals and patients, as well as  other issues more generally concerned with the social impact of technology and biomedical, behavioural and genetic research.
Even if these topics are often discussed by mass media, information related to bioethics is still not easy to find, as it is scattered through a variety of sources, due to its interdisciplinary nature, affecting science, law and philosophy   .
We should also consider the increasing demand for updated and reliable information which is nowadays ever more required by citizens; e-government is requested to provide not only online services but also full data access  . 
As a consequence, in 2001 the Istituto Superiore di Sanità (the Italian National Institute of Health) launched a research project with the purpose of creating a valuable tool for people searching for bioethics information, either for professional or personal interest.

The Italian Project: history, aims and developments

The Research Project “Collection and dissemination of bioethical information through an integrated electronic system” was launched in 2001 with the aim of implementing an integrated system for data collection and exchange of documents related to bioethics, as a reference tool for research activities having an impact on health and welfare. In the framework of the project, a survey was carried out through a questionnaire sent to about 200 institutions, aimed at assessing the state of the art of Italian information resources and holdings of documentation centres and ethical committees. Available Italian web resources were also collected and analyzed.
The results of the survey, together with the analysis of web sites, showed that in Italy there were interesting activities for documentation collecting and spreading in the bioethical field, but a better organisation and coordination of such resources was envisaged. As a result, a web site and a database entirely devoted to bioethics were created.

The SIBIL web site

A web site called  SIBIL (Sistema Informativo per la Bioetica In Linea), is currently available in Italian and English on the ISS web site at the URL www.sibil.iss.it.  SIBIL is designed to promote and disseminate information on bioethics by collecting data from print and electronic sources in order to help health professionals, scholars, students, and citizens to keep pace with knowledge in this sector. The site provides information on courses, educational programs, events and congresses on bioethics, both in Italy and abroad, and includes an up-to-date news section on the national ethical debate. Site visitors can also find annotated links to relevant resources available on the internet, such as specialised  databases and web sites of institutions, libraries, centres or other organisations concerned with bioethics.  The core of the web site is the SIBIL database, that includes references from journal articles, monographs, ethical committees opinions, ethical guidelines, grey literature, laws and regulations, a selection of international legislation as well as electronic resources, for a total amount of almost 5,000 records, published in Italy since 1995 (see figure 1).

Figure 1. Information sources in the SIBIL database

The Italian Bioethics Thesaurus

The organization of information for retrieval in the SIBIL database is based on a controlled vocabulary, the Thesaurus Italiano di Bioetica  (Italian Bioethics Thesaurus), which has been recently made available online also in its English version .
The Thesaurus construction started from the Bioethics Thesaurus developed by the Kennedy Institute of Ethics (USA), originally including about 800 terms , adapted to the evolution of the subject in the Italian area by a group of physicians, bioethicists and information professionals. Their efforts resulted in a vocabulary of over 1,600 descriptors, linked by semantic and hierarchical relationships, and provided with scope notes (at present in Italian) to define usage or overlapping meanings of each term. It does not include proper names (persons, organisations, etc.), which, instead, have been collected in a subject catalogue, also available online. Once a year, the TIB is revised in order to reflect changes in the bioethics domain.
In order to point out the main areas of concern in the bioethics debate in Italy, a semantic analysis of documents indexed in the database has been carried out. The analysis (as shown in Figure 2) was performed by grouping relevant Thesaurus descriptors into broader classes, following the classification scheme adopted by the KIE for selecting bioethics-related citations for PubMed and LocatorPlus . For instance, the class “Reproduction” includes all documents indexed under the descriptors Abortion, Contraception, Prenatal Diagnosis, Prenatal Injuries and Sterilization, while the class “Assisted reproductive technologies” collects the concepts of Artificial Insemination, Cloning, In Vitro Fertilization and Surrogate Mothers.

Figure 2. Main areas of concern in bioethics in Italy as reflected in the SIBIL database

As shown in fig. 2, the “Assisted reproductive technologies” area collects a large number of references. A new law on this matter has been recently approved by the Italian Parliament. This law has been criticized by several parties for strictly regulating and limiting the possibility of assisted reproduction, and also for not allowing research on embryonic stem cells. The increasing number of items on this subject reflects the controversial debate taking place in Italy.
There is also a large number of documents on “Death and dying”, which includes concepts such as Euthanasia, Advance directives, Resuscitation orders. Probably, the issue is at stake also because of population aging and the consequent increase of degenerative and chronic diseases and because there is no legislation on euthanasia in Italy.
“Environmental Ethics”  is not considered in the KIE classification criteria. while, in Italy, it is an emerging topic, since almost all references are to publications of the last two years. There is currently a lively debate on all problems related to ecology and sustainable development.
	Besides areas considered in Figure 2, “Genetic intervention and research” is also an emerging topic, with its 400 documents on Eugenics, Gene therapy and Genome mapping.

The SIBIL database

The SIBIL database records, catalogues and indexes all documentary matter on bioethics produced since 1995 in Italy, together with the main international documents in this sector, covering all aspects of ethical issues in health care and life sciences, drawn from a variety of sources. All unit record fields are searchable. Every record contains a bibliographic description of the cited document, in accordance with the International Standard Bibliographic Description rules, and a short description of its content, through the terms extracted from the Thesaurus and the subject catalogue. An author abstract is also provided for some citations, upon editors’ authorization, while the link to legal full-text documents is under implementation (about half of the documents at present).
As regards the database management, a product already tested in the national market was adopted, given the complex structure of information to be stored and retrieved. A careful analysis of the existing solutions led to the choice of a software largely used by Italian libraries for the management of their workflow. The program offers reliable and flexible support to a wide range of device functions, including an OPAC module for data delivery via the Internet which allows the access to any kind of multi-medial resource.
The search interface is easy and simple also for unskilled users,  who can find in-depth information in the help file, rich in search hints and examples. By filling a request form, users have also the possibility of requesting bibliographic searches to the Documentation Sector and  receive results via e-mail.
The access to the primary source of information is made easier through the link with the main Italian collective OPACs (Online Public Access Catalogues), the Italian Union Catalogue of Serials (ACNP) and the Index of the National Library Service (SBN), merging the holdings of the Italian participating libraries, in terms of serials and books, respectively. The catalogues contain bibliographic, location and availability data for all documents listed, allowing users to identify the library holding and managing the resources retrieved during a search session.
The system provides two ways of searching the database: by term or by list.
A search by term can be conducted in the whole archive by typing words into the free-text entry box to find records in which these words are contained. For more precise results retrieval can be limited to the search fields listed in the query mask: author, title, subject, thesaurus, abstract. The result will be a set of documents containing the terms of interest only in the specified field.
A search by list, instead, allows to access the index of all terms present in each of the above mentioned fields, which can be selected and added to the search. Typing a term in the entry box of a specific search channel and clicking on the relevant “list” button will display a list of  terms in alphabetical order, starting from the required word or the one which more closely matches the query. Browsing the index is useful not only to view the records associated with a particular term, but especially to check different spellings or alternative forms of a word, helping users find appropriate and, possibly, additional search terms. 
Whatever approach one may follow, search terms can be combined through the Boolean logic operators (or, and, not, xor). The xor operator allows retrieval of documents where only one of the requested term is present.
The best way to search for a subject is using the controlled vocabulary, which ensures that records are assigned proper terms to identify equivalent concepts. Controlled terms can be selected through the thesaurus list, which shows definitions, synonyms, related terms, and also more specific (narrower) or more general (broader) terms, giving suggestions for a comprehensive and consistent search formulation. 
Once performed a search, results are displayed in groups of twenty records per page in a default format containing a brief  bibliographic description of each document and  the icon linking to digital objects (web sites, full texts, etc.), when available. The extended format, instead, shows the above mentioned information plus the abstract, if provided, the indexing terms, the possible links allowing to carry out new searches within the database and documents location.
At this stage, it is also possible to select the order in which results can be displayed by specifying one of the criteria given by the system (title, author, year).
If the search yields too many hits it may be beneficial to restrict it to specific fields. By clicking on the “Refine search” button  a new query mask appears where the user can add extra concepts to narrow the search (year, place or language of publication, author’s role, kind of document, etc.). Instead, if results are disappointing, it is possible to extend the query to the online catalogues of libraries and structures using the same OPAC module. The “web search” function allows to automatically repeat the search on all the catalogues participating in the net, thus offering the chance to increase retrieval and get more exhaustive information.
Users with individual code and password, assigned upon request, can also build their own bibliography, including the documents of greatest interest for them, and save and rerun previous searches without re-entering the query parameters. Both the bibliography and the saved searches can be downloaded or sent to an e-mail address.

SIBIL and its integration with other European Systems

The European Commission funded in the last years various projects related to the development of information tools in the field of ethical issues in science and research.
Among these, EURETHNET (European Information Network Ethics in Medicine and Biotechnology) , launched in 2002 and planned to run for three years, with eighteen partners from nine participating European Union countries. The EURETHNET project envisages the development of an information network integrating databases and other information resources in the field of European ethics in medicine and biotechnology. An Internet portal, a database network and the construction of a multilingual thesaurus are some of the activities to be developed in the context of the project.
Since 2004, a Feasibility study for an Advanced Systematic documentation, information and communication Tool in the field of Ethical issues in science, Research and technology (FASTER) has been  developed. Its objectives are the identification  and the evaluation of criteria necessary to create an infrastructure for an advanced systematic information tool, on the basis of available scenarios and models. Our Institute participates in the Advisory Board of the FASTER study.
With a view to European integration, the SIBIL database has been conceived as a flexible tool for international cooperation: the choice of a software allowing data exchange, the English translation of the web site and of the thesaurus are all important steps in this direction.