National Council of Ethics for the Life Sciences Presidency of the Council of Ministers National Council of Ethics for the Life Sciences 13th Report of Activities 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers National Council of Ethics for the Life Sciences 13th Report of Activities Lisbon 2008 2 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers Index 1. INTRODUCTORY NOTE 4 2. COMPOSITION OF THE CNECV 6 3. PLENARY SESSIONS 9 4. ACTIVITY OF THE CNECV 11 4.1 Opinions 11 4.2 Project “Biomedical Research – Ethical Reflections” 14 4.3 NEC Forum Working Group – DNA Databanks 19 4.4 Council Documentation 2007/2008 20 4.5 CNECV website – www.cnecv.gov.pt 21 4.6 Documentation Centre 25 5. REQUESTS IN 2008 26 6. PROMINENCE OF THE CNECV 27 7. PARTICIPATION IN 2008 28 7.1 National Events 28 7.2 International Events 34 7.3 Permanent participation 35 3 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers 1. INTRODUCTORY NOTE During the course of 2008 the National Council of Ethics for the Life Sciences (CNECV) continued to pursue its principal aims: to draw up the opinions requested and to promote bioethical reflection within Portuguese society. Other aims have helped shape the path of its activity, which, even though they are not new, correspond to the culmination of the initiatives carried out by this Council. We are referring, on the one hand, to its international prominence and the accomplishment of the project to produce a book on the ethical issues raised by Biomedical Research. These aims were faced naturally by the CNECV, in response to invitations and challenges from international peer organisations – namely, to gain further prominence internationally, and to follow through the reflection of a recurrent theme on this Council, which has figured in the various opinions issued, in the publication of the book “Biomedical Research – Ethical Reflections”. As well as facing these challenges, the CNECV reflected upon two themes which resulted in the issuing of an opinion: the Opinion on the draft bill on the legal regime of quality and safety relating to the donation, procurement, testing, processing, preservation, storage, distribution and application of tissues and cells of human origin (at the request of the Office of the Minister of Health) and also the Opinion on the direct sale of genetic tests to the public, drawn up on this Council’s own initiative. These are two essential themes for debate at the present time: the first, with respect to stem cell research, leads us to the need for regulating practice depending on the origin of the stem cells (umbilical cord, adult, embryonic), for establishing clear and strict criteria regarding informed consent and many other aspects that the reader will discover when consulting this opinion. The second opinion brings up to date the reflection on the rules necessary not only for the procurement of organs and tissues of human origin, but for all the processing and maintenance of material of human origin which gives rise to complex ethical questions, ranging from informed consent to the need to select the best donors using very precise 4 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers technical criteria, the medical urgency that dominates transplantation, the need to standardise technical procedures and the quality certification of the acts that must be practised in the observance of transparent ethical criteria and applied to all who use these techniques. The publication of the present Report of Activities coincides with the end of the Third Mandate of this Council which, it is hoped, has contributed in a positive and productive way to bioethical reflection in Portugal, over the past five years. As some of the themes dealt with here are also part of the international debate, they gave rise to the formation of reflection groups at European level, meriting promotion by international bodies, where the CNECV was also a protagonist of this reflection. Without the diligence, interest and unconditional commitment of the members of this Council, this result would not have been possible. To seek consensus, in a heterogeneous, multidisciplinary environment, to use as a method constructive, plural dialogue, to analyse controversies and produce opinions with equilibrium and ponderation, that can lead civil society to bioethical reflection of recognised depth, on highly controversial and complex topics, is by no means easy; yet is it not impossible. It is a never‐ending journey and an enriching task to build informed public opinion and a shared dialogue in which all of us take part. The present Report was made in compliance with article 14 of Law no. 14/90 of the 9th June (with the alterations introduced by Law no. 9/2003 of 13th May, Law no. 6/2004 of 26th February and Decree‐Law no. 193/99 of 7th June) and it relates to the activities carried out by the CNECV during the year of 2008. Lisbon, 11th December, 2008 Paula Martinho da Silva Conselho Nacional de Ética para as Ciências da Vida Presidente 5 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers 2. COMPOSITION OF THE CNECV Designating Body The Prime Minister President: Paula Martinho da Silva Minister of Health Minister of Justice Minister of Education Minister of Science and Higher Education Minister of Youth Affairs The Bar Association Dr. João Lobo Antunes Dr. Marta Mendonça Dr. Michel Renaud Dr. José de Oliveira Ascensão José Pedro Ramos Ascensão Rita Amaral Cabral 6 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers Commission on Equality and Women’s Rights The Medical Association The Biologists’ Association Lisbon Academy of Sciences The Foundation for Science and Technology The National Council of Legal Medicine The Assembly of the Republic Dr. Maria Fernanda Henriques Pedro Nunes Dr. Pedro Fevereiro Dr. Daniel Serrão Dr. Fernando Regateiro Dr. Jorge Soares Dr. Salvador Massano Cardoso Dr. Agostinho Almeida Santos 7 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers Dr. António Vaz Carneiro Dr. Jorge Sequeiros Dr.Rui Nunes Dr. Miguel Oliveira da Silva National organisations representing activities connected with bioethics Jorge Biscaia Portuguese Council of University Rectors Dr. Maria do Céu Patrão Neves Assessorship Assessor for the President Dr. Ana Sofia Carvalho Secretariat Executive Secretary Cíntia Monterde Águas 8 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers 3. PLENARY SESSIONS The CNECV meets in an ordinary Plenary Session once a month, although extraordinary sessions may be convened whenever deemed necessary. During the course of 2008, sessions 149 to 156 were held, a total of eight plenary sessions, according to the following Schedule and Work Agenda: 149th PS – 8th January Reflection on the work project relating to “Biomedical Research”. 150th PS – 12th February Reflection on the Proposal for the Opinion on the Draft Bill on “The legal regime of quality and safety relating to the donation, procurement, testing, processing, preservation, storage, distribution and application of tissues and cells of human origin”; Reflection on the Proposal for the Opinion on “The direct sale of genetic tests to the public”; Work Project on “Biomedical Research” 151st PS – 11th March Approval of the 2007 Annual Report of Activities; Analysis and discussion of the Opinion proposal relating to “The direct sale of genetic tests to the public”; Reflection on the project on “Biomedical Research”. 152nd PS – 8th April Analysis and discussion on the proposal for the Opinion on “The direct sale of genetic tests to the public”. 9 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers 153rd PS – 13th May Continuation of the reflection on the Project on “Biomedical Research”; Analysis and discussion of the proposal for the Opinion on “The direct sale of genetic tests to the public”. 154th PS – 24th June Continuation of the reflection on the Project on “Biomedical Research”; Analysis and discussion of the proposal for the opinion on “The direct sale of genetic tests to the public”, with a view to reaching a deliberation. 155th PS – 8th July Analysis and discussion of the proposal for the opinion on “The direct sale of genetic tests to the public”, with a view to reaching a deliberation. 156th PS – 18th September Closing session. 10 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers 4. CNECV ACTIVITY 4.1 Opinions 4.2 Project on “Biomedical Research – Ethical Reflections” 4.3 Council Documentation 2007/2008 4.4 NEC Forum Work Group – DNA Databanks 4.5 CNECV Website – www.cnecv.gov.pt 4.6 Documentation Centre While developing its consultancy skills and with the ongoing aim of raising awareness and stimulating the bioethical debate in Portuguese society, the CNECV dedicates its reflection to a broad range of subjects, both upon its own initiative and in response to the requests it receives. Its transdisciplinary nature and autonomy reveal the scope of the discussion, as well as some of the more important aspects of the bioethical debate: the capacity for dialogue, the acceptance of divergence and the willingness for consensus. During the course of 2008, the CNECV issued two opinions, one on its own initiative, and was present at national and international events of particular interest for bioethical reflection. It then proceeded to the publication of its documentation, as part of the Council’s activity both this year and last year. Equally important was the completion of the project to produce a book on the ethical questions raised by Biomedical Research, a recurrent theme on this Council which has figured in the various opinions it has given. 4.1. Opinions During the course of 2008, the CNECV issued Opinions nº.s 55 and 56, referring, respectively, to the Draft Bill on the Legal Regime of quality and safety relating to the donation, procurement, testing, processing, preservation, storage, distribution and 11 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers application of tissues and cells of human origin and to the direct sale of genetic tests to the public. The reports made prior to the opinions were written with great commitment, providing a profound reflection upon the questions under analysis. Press conferences are normally held in order to publicly present and divulge each of the opinions, at which the CNECV is represented by the President and the Members responsible for writing the opinions. In 2008, the presentation of Opinion no. 56 of the CNECV was generally well attended by the media and resulted in a broader divulgation of the Council’s work and the issues discussed. At the same time that the press conferences were held, both the opinions and the respective reports and declarations were made available on the CNECV website – www.cnecv.gov.pt – for access by the general public. iStockphoto Opinion on the Draft Bill on the Legal Regime of quality and safety relating to the donation, procurement, testing, processing, preservation, storage, distribution and application of tissues and cells of human origin (55/CNECV/2007) Opinion requested by the office for the Minister of Health Drafters: Dr. Jorge Soares Rita Amaral Cabral Approved in plenary session on 12th February. In 2007, the Office of the Minister of Health and the Authority for Blood and Transplant Services (ASST) requested the opinion of the CNECV on a draft bill which transposes Community Directives 2004/23/CE, 2006/17/CE and 2006/86/CE to the Portuguese judicial system, which regulate, respectively, questions relating to the “donation, 12 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers procurement, testing, processing, preservation, storage, distribution and application of tissues and cells of human origin” and “traceability, the reporting of serious adverse reactions and events and the technical requirements for the coding, processing, preservation, storage and distribution of tissues and cells of human origin”. In Portugal, many of the ethical and legal principles applicable had already been defined in the ambit of Law no. 12/2005, of 26th January – Personal genetic information and health information. These principles are affirmed in Opinion no. 43/CNECV/2004. As a result of CNECV Opinion no. 54 on this matter, the draft legislation was reformulated. When the new document was submitted to a new opinion of the Council, the comments and recommendations regarding previously analysed aspects had already been harmonised. Opinion of the Direct Sale of genetic tests to the public (56/CNECV/2007) Opinion on the initiative of the CNECV Drafters: Dr. António Vaz Carneiro Dr. Fernanda Henriques Dr. Doutor Jorge Sequeiros Approved in plenary session on 8th July iStockphoto The reflection of the CNECV on the direct sale of genetic tests to the public was motivated by the growing market for the commercialisation of this type of tests and, specifically, the possibility of direct sale by public and private bodies, without the need for medical prescription and genetic counselling. The Council considered that the direct sale of genetic tests to the public can create false needs and unrealistic expectations and can bypass the need for medical prescription, thus 13 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers jeopardising the right to genetic counselling and to information for the sick and for the public in general, as well as overburdening the health system. Transparency, loyal publicity and guaranteed quality should be demanded if non‐medical genetic tests are made available for direct sale to the public. Health‐related genetic tests, for diagnostic or predictive purposes, should not be made available for direct sale to the public, in respect for fundamental ethical principles. Both Opinions, as well as other Council work, may be consulted at www.cnecv.gov.pt . 4.2. Project on “Biomedical Research – Ethical Reflections” As well as the work involved in the drawing up of reports and opinions, and the respective discussion, reflection and deliberation, the CNECV undertook other activities within the scope of its competences, in particular, the publication of the book “Biomedical Research – Ethical Reflections”. This publication was preceded by the presentation and prolonged reflection of the Council members in the various plenary sessions held in 2008. Biomedical Research, in its multiple facets, is currently a topic of great interest and relevance, underlying the positions taken by the most prominent international Bioethical organisations. The CNECV, within the scope of its competences, has now published a book resulting from a project carried out in its 3rd Mandate, combining the reflection and personal analysis of those Council members who deal very closely with relevant aspects in this field. 14 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers In a time of multifaceted research, with a range of parties involved (researcher, individual, population, doctor, industry), whose interests are often conflicting and raise different expectations (freedom of investigation, treatment, a cure, ethical assessment and scientific, intellectual and economic interests), the balance between challenges, risks and benefits is becoming increasingly complex. The CNECV hopes that the reflection carried into the publication will accomplish its most ambitious aim – to put principles into practice, adapting them to new realities, to establish behaviours that are commonly accepted internationally, and to define acceptable parameters for all parties involved; and to allow tensions to dissipate in the application of the principle, today designated the “Primacy of Human Being” which underlies all international standards, thus ensuring that the interests and welfare of the human being shall prevail over the sole interest of society or science. This book is divided into various chapters; in the first, Clinical trials of new medicaments, there is a general approach to some of the issues arising in this area, which is the starting point for presenting more specific themes. As the work is dedicated to ethical reflection, in the chapter on Clinical research in human beings, António Vaz Carneiro presents and develops the principal ethical issues involved in the clinical research debate. The global nature of the subject requires that we consider some of the main International Documents relating to Biomedical Research. Hence, Daniel Serrão presents the key international instruments for regulation/ethical reflection in the clinical trials of new medicaments, especially those of the European Union. In his text on the Publication of results, António Vaz Carneiro identifies and expounds the ethical issues at the heart of this stage in the scientific process: the identification and declaration of the conflicts of interest between the researchers and the authors of this publication should be clearly defined. 15 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers Research on vulnerable populations is, undoubtedly, an indispensable chapter in a book which reflects on the theme of biomedical research. The difficulty in resolving a conflict of principles leads us to question whether, in our eagerness to protect, we do in fact protect or fail to protect the most vulnerable. The chapter on Vulnerable Populations is therefore approached from three perspectives which coincide with situations in which that vulnerability is most evident. The text Vulnerable populations – children and adolescents, by Jorge Biscaia, focuses attention on the essential issue of vulnerability and calls for reflection on other fundamental questions in bioethics and which are particularly crucial in biomedical research – consent and the capacity to consent and the balance between risk and benefit. In his text on Developing populations, Miguel Oliveira da Silva analyses the principal ethical issues relating to this specific context, namely informed consent, socio‐economic and health vulnerability, the capacity of ethics councils, the real aims of research, or the correct use of placebos. Recognising that the effective assessment of a medicament necessarily implies the assessment of its effects and risks, in every type of target population whenever possible, the situation of women in the framework of biomedical research is described and analysed by Fernanda Henriques. While the two previous chapters explore specific aspects of biomedical research, the following chapter, on Conflicts of interest, deals with one of the dilemmas which arises whenever someone, inside or outside the field of research, is found in a predominant position and whose personal or professional interests may conflict with others in the same institution, company or service, making it difficult to carry out their duties with the necessary impartiality. This discussion, so often missing from national debate, as João Lobo Antunes points out, gains particular importance for anyone who is dedicated to biomedical research, given 16 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers that the conflict of interests can extend to the very top of the scale of the relations between the medical profession and industry. As has been mentioned, even though the traditional and privileged field of biomedical research continues to be the field of clinical trials, the truth is that today biomedical research extends to other areas of knowledge where new attitudes to vulnerability, power, precaution and responsibility are added to the traditional principles of autonomy, beneficence and justice. We have therefore selected some themes for the chapter on new fields of scientific research which, without a doubt, demand a change of approach to the framework of biomedical ethics based on traditional principles. The chapter on Biobanks, presented by Fernando Regateiro, deals with the specific issue of biobanks for biomedical research, with particular ethical questions resulting from the specificity of the biological sample as a source of information. Human improvement is analysed from three angles: ethically, technically and juridically, respectively, by Marta Mendonça, Salvador Massano Cardoso and José Pedro Ramos Ascensão. Following the chapter on “human improvement” the text on the pertinence of the philosophical concept of “personal identity” for biomedical research, presented by Michel Renaud, provides interesting reading. Integrating the new fields proposed by Biomedical research, Neuroethics, presented by João Lobo Antunes, is undoubtedly a field of reflection of great pertinence for current bioethics. In this book Jorge Soares reflects on New Diagnostic Technologies and raises two fundamental questions: the confidentiality of the information provided by technology and the accessibility to an expensive, sophisticated and inevitably scarce resource. 17 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers The need for the assessment of genetic tests, brought up in the previous reflection, is later developed in detail by Jorge Sequeiros. Throughout this whole process there is yet another essential perspective which is dealt with here by Jorge Soares, namely Public Financing of Scientific Research. The benefits for the human being brought about by the biomedical sciences should always be accompanied by an ethical assessment of the conditions under which the research is carried out, for the good of humanity and to protect the interests of the human being and the freedom of investigation. In this context, the author of the final chapter of this book, Ethics Councils, describes the reasons for the existence and the running of ethics councils for both clinical trials and for biomedical research. Maria do Céu Patrão Neves also reflects in depth on the diversity of problems arising from this institutionalisation. With this publication, the CNECV aims to contribute to a broad reflection, not only of the scientific community, but of all those who are interested in the ethical questions raised by scientific progress. 4.3 NEC FORUM WORK GROUP ‐ DNA DATABANKS Arising from the proposal presented by the President of the CNECV at the 10th Forum of National Ethics Councils of the countries of the European Union, held in Lisbon in October 2007, regarding the organisation of periodic meetings of the European Ethics Councils, on a given theme discussed simultaneously by different Councils, with a view to finding common ground for the construction of a bioethical dialogue, the European Commission presented the possibility of this proposal being put into practice. Consequently, an initial meeting on DNA databases was organised, given that this theme had already been dealt with by various Councils. The CNECV was represented at the meeting by Councillor Dr. Jorge Sequeiros. A new meeting is planned to be held in the course of 2009. 18 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers 4.4. CNECV Documentation 2007/2008 In a constant effort to update and divulge the opinions of the Council, 2008 saw the publication of the 12º Volume da Documentação do CNECV (12th Volume of CNECV Documentation) referring to the opinions and documents issued in the two‐year period 2007/2008. The contents of this publication reflects the dynamics of the CNECV and the diversity of subjects under analysis: Pre‐Implantation Genetic Diagnosis; The Legal Regime for DNA Profile Databases; Draft Bills Nº 126/X (which Establishes the Principles of Scientific Research in Stem Cells and the Use of Embryos), and Nº 376/X (which Establishes the Legal Regime for the Use of Stem Cells, for the Research Purposes and the Respective Therapeutic Applications); the legal regime of quality and safety relating to the donation, procurement, testing, processing, preservation, storage, distribution and application of tissues and cells of human origin; and the direct sale of Genetic Tests to the public. The CNECV publications are available to the public, and their reading can be complemented by visiting the CNECV website – www.cnecv.gov.pt. 19 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers 4.5. The CNECV Website – www.cnecv.gov.pt The CNECV website – www.cnecv.gov.pt – is permanently updated, seen as a privileged means of communication between the Council and the plural society in which it is integrated. The English version of the site is also available, where the Council opinions are duly translated and updated. This version has given the Council significant international prominence, which can be seen from the growing number of consultations and mentions by foreign entities. Furthermore, for all those with special needs, such as the disabled and the elderly, current information and communication technology has become a prime means of social integration and participation and of promoting active citizenship. Thus, in accordance with the Resolution of the Council of Ministers no. 155/2007, of 2nd October, the CNECV website fulfils the necessary norms for all citizens to be able to access its contents. 20 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers By analysing the data on access to the site in 2008, we can state that in the course of that year, until the date on which this Report was drawn up, the CNECV website received 15,006 visits, 74% of which from new visitors, with an average of 43 visits per day and more than 45,000 page viewings. New Visitors – 73,91 % (11 091) Revisits – 26,09 % (3 915) TOTAL (15 006) Figure 1 – Visitors to the CNECV website – from 1st January to 11th December, 2008 The provenance of the visitors covers the six continents, with 72 countries and 35 languages, with a predominance of consultations in the Portuguese language, from Portugal (11,625 visits) and from Brazil (2,398 visits). Figure 2 – Geographical distribution of the visits 21 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers The most commonly viewed pages, apart from the initial page where the most recent work and highlights of the Council are divulged, are the page publicising the Opinions and the page listing the members of the CNECV, which provides a short biography of its President and Councillors. Sub‐menus and destination pages Regarding the keywords that direct search engine research, the most commonly used terms are “cnecv”, “conselho nacional de ética” and “ética”, and also reference to the associated terms “ética e ciência”. Keywords 22 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers In the contacts made by students, members of the media, public and private entities and the general public, prior consultation of the Council website is often referred to, for its presentation and as a source of preliminary research, which demonstrates the importance of the information shown for an understanding of the composition, function and responsibilities of the CNECV, as well as the result of its work, in the form of the approved opinions made available in both Portuguese and English. 23 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers 4.5. Documentation Centre The structure of the CNECV includes a bioethics documentation centre, which is open to the public. In order to constantly update its documental collection, national and foreign books on themes considered relevant for issues discussed were acquired during the year. The Centre is also enriched by publications offered by its authors or publishers. The Centre also contains national and foreign periodicals, namely volumes of published opinions and studies from other European ethics councils and EU organisations. The catalogued works support the Council’s operations and are available for consultation by topic on the database and at the Centre. 24 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers 5. REQUESTS IN 2008 As well as fulfilling the duties attributed to the CNECV, each year the Council receives a growing number of requests for clarification and opinion from national and international bodies, secondary school pupils, undergraduate and postgraduate students, researchers and members of the public. To help the public become more aware of the ethical problems in the area of the life sciences, the CNECV responds to and encourages the participation of the general public, whose requests are almost all received by electronic mail. One should also mention the unregistered contacts by telephone and in person, made mainly by the media, to obtain clarification from the CNECV on subjects related to bioethics discussed in current affairs. Figure 3 – Requests addressed to the CNECV in 2008, by interest groups Groups Requests Citizens (general) Media Secondary school pupils Undergraduate/postgraduate students International Ethics Councils Researchers (national and international) Others Total 12 18 9 18 6 17 14 94 25 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers 6. PROMINENCE OF THE CNECV The intense activity of the CNECV was, in the course of 2008, publicised by a range of means, for instance electronically, through the availability and updating of the CNECV website, the English version of which contributed greatly to the divulgation of its opinions and activities. This information was also spread worldwide by references to the CNECV in other websites, portals and weblogs. The participation of the Council members in seminars, conferences and events, discussion groups and workshops gave prominence to the documents of the CNECV in Portugal and abroad. The volumes of the CNECV publications also helped to publicise its contributions to the bioethics debate, especially in schools. In this context one should mention the Council’s participation in national and international publications, such as the Revista Portuguesa de Bioética (Portuguese Review of Bioethics), where it gave an account of the work carried out at the 10th Forum of National Ethics Councils, held in Portugal in 2007 under the auspices of the Portuguese Presidency of the European Union, and the review “Ethically Speaking”, a publication of the European Group on Ethics in Science and New Technologies of the European Commission (EGE), where the most recent opinions and activities of the Council were divulged. The CNECV also contributed to the updating of information on the most recent developments in bioethics in our country at the request of the Council of Europe Bioethics Committee (CDBI), and the translations of its opinions are divulged by the Library for scientific divulgation of the European Commission – SINAPSE. 26 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers 7. PARTICIPATION IN 2008 7.1 National Events 7.2 International Events 7.3 Regular participation Throughout 2007, many of the members of the Council participated personally in conferences in Portugal and abroad, lecturing in the specific area of bioethics, whilst their participation in numerous activities as representatives of the CNECV should also be highlighted. The President and the Council members also collaborated in the organisation of events within the scope of their duties. Equal importance should be given to the participation of the Council itself, in organisations under international authorities, be they the European Union, the Council of Europe (participation in COMETH – the European Conference of National Ethics Committees of member states of the Council of Europe) or UNESCO, where it has been invited to collaborate. In 2008 the CNECV was represented and presented papers at the following events: 7.1 National Events JANUARY Prize for Female/Male Parity in Media Communication 25th – Organisation: Comissão para a Cidadania e Igualdade de Género (Commission for Citizenship and Gender Equality) Palácio Foz, Lisbon Council represented by Paula Martinho da Silva 27 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers FEBRUARY III Congress of the Biologists’ Association – Bioeconomics 25th/27th – Organisation: The Biologists’ Association Reitoria, Lisbon University Participation of Paula Martinho da Silva in the Opening Ceremony MARCH 8th “Nursing” Congress 13th/14th – Organisation “Nursing” Magazine FIL Conference Centre ‐ Lisbon Paper entitled “How far is it ethical to err?” given by Paula Martinho da Silva Public session for the presentation of the Strategic Objectives and Recommendations for a Plan of Action for Education and Training for Citizenship 18th – Education Forum for Citizenship Calouste Gulbenkian Foundation, Lisbon Council represented by Paula Martinho da Silva APRIL Gulbenkian Health Forum “Quantos somos, quantos seremos” [“How many are we, how many shall we be”] 8th – Organisation: Calouste Gulbenkian Foundation Calouste Gulbenkian Foundation, Lisbon Council represented by Paula Martinho da Silva III Congress in Biological Engineering 9th/10th – Organisation: Nucleus of Biological Engineering (NEB) 28 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers Conference Centre of the Higher Technical Institute, Lisbon Paper on “The Role of Ethics in Science” given by Paula Martinho da Silva Swearing‐in ceremony of the executive bodies of the Association of Biologists 10th – The Association of Biologists, Lisbon Council represented by Paula Martinho da Silva Seminar on “Células Estaminais, o Presente e o Futuro” [“Stem Cells, the Present and the Future”] 19th – Organisation: Ass. Estudantes Escola Sup. Saúde Dr. Lopes Dias Polytechnic Institute of Castelo Branco Paper on “The opinion on Draft Bills no. 126/X and 376/X” given by Councillor Dr. Pedro Fevereiro Conference on “Construindo Consensos para a sustentabilidade – Os Conselhos Nacionais de Desenvolvimento Sustentável” [“Building Consensus for sustainability – National Councils of Sustainable Development”] 29th – Organisation: Calouste Gulbenkian Foundation Calouste Gulbenkian Foundation, Lisbon Council represented by Paula Martinho da Silva MAY XXIX Spring Meeting – “Pastagens e Biodiversidade” [“Pastures and Biodoversity”] 7th/9th – Organisation: Sociedade Portuguesa de Pastagens e Forragens Companhia das Lezírias, Samora Correia Paper on “Ethical aspects of biodiversity” given by Paula Martinho da Silva on the panel “Biodiversity and Ethics” 29 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers VII Health Forum Dia 14 – Organisation: Pfizer / Diário Económico Pestana Palace Hotel, Lisboa Council represented by Paula Martinho da Silva JUNE Session: Last lesson given by Professor José António Reboucho Esperança Pina, entitled “Vascularização Cardíaca” [“Cardiac Vascularisation”]. 3rd – Auditorium of the Reitoria, New University of Lisbon Council represented by Paula Martinho da Silva Gulbenkian Health Forum “Como se envelhece em Portugal” [“Growing old in Portugal”] 16th – Organisation: Calouste Gulbenkian Foundation Calouste Gulbenkian Foundation, Lisbon Council represented by Paula Martinho da Silva Conference “A contrafacção de Medicamentos” [ “The forgery of Medicaments”] 25th – Organisation: Pfizer / Diário Económico” Pestana Palace Hotel, Lisbon Council represented by Paula Martinho da Silva National Meeting on Palliative Care 27th – Organisation: Unidade de Missão dos Cuidados Continuados Integrados FIL Auditorium, Lisbon Council represented by Councillor Dr. Michel Renaud 30 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers JULY V Luso‐Brazilian Congress on Bioethics 3rd/4th – Promoting Bodies: Instituto de Bioética da Universidade Católica Portuguesa, Centro de Estudos de Bioética and Sociedade Brasileira de Bioética Institute of Bioethics, Portuguese Catholic University, Porto Mediation of the debate “GLOBAL BIOETHICS: THE CROSSROADS OF CONSENSUS?” by Paula Martinho da Silva SEPTEMBER Ceremony of the António Champalimaud Vision Award 9th – Organisation: Champalimaud Foundation Mosteiro dos Jerónimos, Lisbon Council represented by Paula Martinho da Silva Ceremony of the ETHOS Bioethics Award 2nd – Organisation: Bioethics Institute, Portuguese Catholic University and Calouste Gulbenkian Foundation Calouste Gulbenkian Foundation, Lisbon Council represented by Paula Martinho da Silva OCTOBER Congress “Ética no Cuidar: Fórmulas e Equações” [“Ethics in Caring: Formulae and Equations”] 9th – Organisation: Instituto S. João de Deus Instituto S. João de Deus, Lisbon Paper on the theme “The result of the norm” given by Paula Martinho da Silva 31 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers NOVEMBER Honours award ceremony with the Grand Cross of the Order of Santiago of the Sword awarded to Dr. Daniel Serrão, Jorge Biscaia and Dr. Walter Osswald, together with a homage to Dr. Luís Archer 4th – Presidency of the Republic Palace of Belém, Lisbon Council represented by Paula Martinho da Silva Launching ceremony of the book “A sexualidade, a Igreja e a bioética” [Sexuality, the Church and Bioethics”] 6th – Organisation: Ed. Caminho Casa‐Museu da Fundação Medeiros e Almeida, Lisbon Council represented by Paula Martinho da Silva Conference “Vulnerabilidade e Espiritualidade” [Vulnerability and Spirituality] 15th – Organisation: Centro de Estudos de Bioética CADC – Instituto Justiça e Paz, Coimbra Paper given by Paula Martinho da Silva Gulbenkian Health Forum “Uma sociedade madura num mundo global” [“A mature society in a global world”] 24th/25th – Organisation: Calouste Gulbenkian Foundation Calouste Gulbenkian Foundation, Lisbon Council represented by Paula Martinho da Silva DECEMBER I Conference on Regulation of the Nurses’ Association 32 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers 4th/5th – Organisation: Nurses’ Association Lisbon Conference Centre Council represented by Paula Martinho da Silva 7.2 International Events JANUARY NEC Troika Meeting 17th ‐ Organisation: European Commission (with a view to preparing the Forum of National Ethics Councils in Brdo, Slovenia) European Commission, Brussels Council represented by Dr. Ana Sofia Carvalho and Cíntia Águas FEBRUARY 11th Forum of National Ethics Councils – NEC Forum EGE‐NEC Forum Joint Meeting 28/29 – Brdo, Slovenia Biennial International Meeting of the Presidents and secretaries of the National Ethics Councils of the EU member states, held under the auspices of the Slovenian Presidency of the European Union CNECV represented by Paula Martinho da Silva SEPTEMBER 7th Global Summit of National Ethics Committees 1st/2nd – Organisation: CCNE ‐ Comite Consultatif National d’Ethique Fondation Simone et Cino del Luca, Paris Council represented by Paula Martinho da Silva 33 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers First NEC FORUM DNA Databanks Work Group Meeting 22nd – European Commission, Brussels CNECV represented by Councillor Dr. Jorge Sequeiros NOVEMBER 12th Forum of National Ethics Councils (NEC Forum) 27th/28th – Organisation: CCNE – Comite Consultatif National d’Ethique Institut de France ‐ Fondation Simone et Cino del Luca, Paris Biennial International meeting of the Presidents and secretaries of the National Ethics Councils of the EU member states, held under the auspices of the French Presidency of the European Union CNECV represented by Paula Martinho da Silva and Dr. Ana Sofia Carvalho. 34 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers 7.3 Permanent participation Education for Citizenship Forum Fonte: Fórum Educação para a Cidadania In order to promote citizenship values in a school context, the Minister of Education and the Presidency of the Council of Ministers jointly created a Citizenship Education Forum, in which individuals and organisations representing a wide range of interests and knowledge participated. Resulting from the work carried out by the two “Reflection Groups”, “major citizenship issues” and “citizenship in school”, on 18th March, 2008, the final document on Strategic Aims and Recommendations for a Plan of Action for Citizenship Education and Training was presented publicly at the Calouste Gulbenkian Foundation. Representing the CNECV, the President, Paula Martinho da Silva, and the Executive Secretary, Cíntia Águas, participated in this project. For further information, please consult the respective site: http://www.cidadania‐ educacao.pt. 35 13th Report of Activities / 2008 National Council of Ethics for the Life Sciences │Presidency of the Council of Ministers National Council of Ethics for the Life Sciences Presidency of the Council of Ministers Rua Professor Gomes Teixeira 1399‐022 Lisboa PORTUGAL Tel. + 351 21 392 73 16 Fax + 351 21 392 76 29 [email protected] www.cnecv.gov.pt 36 13th Report of Activities / 2008
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