NCE Report on the Activities 2015 for the Attention of the Federal Council, Parliament and the General Public
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Swiss National Advisory Commission on Biomedical Ethics NCE Report on the Activities 2015 for the Attention of the Federal Council, Parliament and the General Public Adopted by the Commission in May 2016 1 Contents Report on the Activities 2015 of the NCE for the Attention of the Federal Council, Parliament and the General Public Foreword 4 1. Legal Foundations and Mandate 6 2. Opinions 7 3. Communication with the Public 9 4. National and International Cooperation 10 5. Working Groups 12 6. Experts Consulted 13 7. Plenary Meetings 13 8. Secretariat 13 Members of the Commission 14 Foreword Among the highlights of the year under review was Dying” was further discussed in the Swiss Parlia‑ the third Trinational Meeting of German-Speaking ment Building with members of the parliamentary Ethics Commissions (Germany, Austria and Switzer‑ Science, Education and Culture Committees (SECC) land / DACH). Following the previous years’ meetings and Social Security and Health Committees (SSHC). in Vienna (2013) and Berlin (2014), the NCE invited Presentations were given by the chairs of the three the German Ethics Council and the Austrian Bioeth‑ ethics committees, with brief contributions from the ics Commission to Bern for the event in 2015. At the invited parliamentarians Felix Gutzwiller, Maya Ingold suggestion of the Swiss Commission, the meeting and Guy Parmelin. Also in attendance were delega‑ held on the 16th and 17th of April was devoted to the tions from the Central Ethics Committee (CEC) of the topic of the Culture of Death and Dying – a perennial Swiss Academy of Medical Sciences (SAMS) and the subject of intense debate both in Germany and Austria Federal Ethics Committee on Non‑Human Biotechnol‑ as well as in Switzerland. The aim of the Bern confer‑ ogy (ECNH). This event was skilfully organised by the ence was to discuss fundamental questions of life Commission’s Executive Secretary, and the feedback and death freed from the frequently narrow confines received from all the participants was highly favour‑ of medical, ethical and legal discourse, and to explore able. the indispensable perspectives of the public and society at large. This was deliberately conceived as a Another highlight was the Commission’s annual two‑ counterpoint to the issue of assisted suicide, which day regional meeting, held in Sion, which was also has already been widely discussed. devoted to the Culture of Death and Dying. Thanks to the preparations on site made by Professor François‑ The event, attended by around 60 participants, began Xavier Putallaz, member of the Commission, and the on the 16th of April with a tour of the Parliament Build‑ keynote presentation by Professor Paolo Merlani, ing and an incisive address given by former Federal member of the Commission, the public panel discus‑ Councillor Moritz Leuenberger. The following morning, sion attracted enormous interest. discussions were held at the Bank Council Room of the Swiss National Bank without public attendance; in In December, after two years of intensive efforts, the afternoon, the topic of “the Culture of Death and the Commission unanimously adopted the report 4 on Biobanks for Research. Biobanks are a new, but dying and on non‑invasive prenatal testing (NIPT) are increasingly important institution within the healthcare currently being prepared. During my tenure, the Com‑ systems. Over the past few years, numerous biobanks mission’s international activities have been strength‑ (some public, some private) have been established ened and expanded. In addition to our participation at around the world and also in Switzerland. These international events and in global forums such as the collections of biological materials linked to donors’ International Bioethics Committee, the Global Summit personal data make it possible for medical, pharmaco‑ of National Ethics / Bioethics Committees, the Forum logical and biological research to identify associations of National Ethics Councils and the European Commis- between the genome and serious conditions such as sion’s International Dialogue on Bioethics, contacts cancer, Alzheimer’s disease or diabetes. However, have been established with the relevant European these opportunities are accompanied by risks – in par‑ institutions, the above‑mentioned trinational DACH ticular, risks to privacy and, not least, risks of discrimi‑ meetings were launched, and there have been initial nation. With its Opinion, the Commission aims to raise contacts with a view to organising similar meetings awareness of the issue of biobanks for research in the with our French‑ and Italian‑speaking counterparts. Federal Council and Parliament, and especially among the public, to stimulate debate, and to offer recom‑ In connection with the re‑elections scheduled for all mendations for improvements in the social, political extra‑parliamentary commissions, my term as Chair and legal spheres. came to an end in December of the year under review. I would like to thank all the members of the Commis‑ This foreword to the 2015 report provides an opportu‑ sion, the head of the Secretariat and her scientific nity for me to look back briefly over my six‑and‑a‑half collaborator for their professionalism and dedication – years as Chair of the Commission. The Opinion on and for always making it so enjoyable to work together biobanks is the eighth to be issued during my chair‑ as colleagues. manship. Among the other topics addressed were advance directives, presumed consent to organ dona‑ Tübingen, April 2016 tion, “intersexuality” and medically assisted reproduc‑ Otfried Höffe, Chair tion. In addition, Opinions on the culture of death and 5 1. Legal Foundations and Mandate The Swiss National Advisory Commission on Bio‑ medical Ethics is an extra‑parliamentary body, which Federal Act on Medically Assisted was established by the Federal Council on the 3rd of Reproduction (Reproductive Medicine Act, July 2001. RMA) of 18 December 1998 (status as of 1 January 2013) In carrying out its tasks, and especially in formulating its Opinion, the Commission is obliged to remain inde‑ Chapter 3: National Ethics Commission pendent of political, industrial and scientific interests. Art. 28 1. The Federal Council shall establish a national ethics The legal basis for the Commission is provided by: commission. Article 28 of the Reproductive Medicine Act of the 18th of December 1998 (see below) and 2. The commission shall monitor developments in The Regulation on the National Advisory Commis‑ assisted reproductive techniques and gene technol‑ sion on Biomedical Ethics of the 4th of December ogy in the area of human medicine and comment 2000 (SR 810.113). from an ethical perspective, in an advisory capacity, In addition, the Commission’s deliberations are on associated social, scientific and legal issues. governed by the NCE Rules of Procedure of the 29th of October 2009. 3. In particular, the commission shall have the following tasks: The Commission’s mandate is to conduct careful and a. to draw up additional guidelines relating to comprehensive assessments of ethical issues arising this Act; in the areas of medicine and healthcare, focusing in b. to identify gaps in the legislation; particular on new scientific knowledge and technolo‑ c. to advise the Federal Assembly, the Federal gical developments. Thus, the Commission contrib‑ Council and the cantons on request; utes to an opinion‑forming process at all levels of soci‑ d. to inform the public about important findings ety, which is guided by evidence‑based arguments. and to promote debate on ethical matters within society. The emphasis is placed on the preparation of Opinions and on discussions with the public. The NCE does 4. The Federal Council shall determine the other not, however, review individual research projects; this tasks to be carried out by the commission remains the responsibility of Switzerland’s cantonal in the area of human medicine. It shall enact ethics committees. implementing provisions. 6 2. Opinions 2.1 Overview of Opinions Prepared by the 2.2 Summary of NCE Opinions Commission in the Period Under Review Opinion no. 24 / 2015: In 2015, the Commission addressed the follow‑ Biobanks for Research ing topics: Biobanks have to reconcile a wide variety of individual and public interests – the interests Opinion no. 24 / 2015 of biomedical research, patients and health‑ Biobanks for Research (adopted on the 10th of care professionals, donors, the biotech and December 2015; published on the 2nd of May pharmaceutical sector, and, more generally, 2016) Switzerland’s position as a research centre and its healthcare system. At the same time, Unpublished response of the 13th of January biobanks affect the rights and interests of 2015 to an enquiry, dated the 18th of September individuals whose samples and data are held; 2014, from the Health and Accident Insurance of particular relevance are the donors’ right to Directorate of the Federal Office of Public Health self‑determination and the right to know (or not (FOPH) on “Non-Invasive Prenatal Testing to know) in relation to genetic predispositions (NIPT)”. to disease as well as issues of data protection and data security. The public’s trust, therefore, Unpublished response of the 29th of April 2015 presents a key “resource” for biobanks, which to an enquiry, dated the 24th of March 2015, from means that effective safeguards are required the Federal Office for Civil Protection (FOCP) on to prevent any abuse. Trust can be promoted “Tour d’Horizon Biosecurity: Proposal on the by providing appropriate information about the Management of Dual-Use Research”. activities of biobanks; transparency needs to be ensured regarding the motives of the individuals Unpublished response of the 31st of August 2015 or organisations concerned, and the framework to an enquiry, dated the 28th of May 2015, from within which biobanks operate. Transparency is the Crisis Management and International Coop‑ also a fundamental requirement for public de‑ eration Section of the Federal Office of Public bate so as to warrant the democratic legitimacy, Health (FOPH) on “Swiss Influenza Pandemic which is indispensable given the significance of Plan – Review of the Chapter on Ethical Is- biobanks for society as a whole.