20th Session of the International Bioethics Committee of UNESCO (IBC)
At the kind invitation of the Government of the Republic of Korea, the 20th (Ordinary) Session of the International Bioethics Committee of UNESCO (IBC) was held in Seoul, from 19 to 21 June 2013 and attracted more than 100 participants from 33 countries and external partners, including from National Commissions, National Bioethics Committees, the European Union, and NGOs. The World Commission on the Ethics of Scientific Knowledge and Technology (COMEST) was also represented during the session.
This session was co-hosted by the Ministry of Health and Welfare of the Republic of Korea, and organized in cooperation with the Korean National Commission for UNESCO and the National Project for Personalized Genomic Medicine (PGM 21). It was also sponsored by Korea National Institute for Bioethics Policy (KoNIPB), Yonsei University’s School of Public Health and Asian Institute for Bioethics and Health Law, the Korean Foundation for International Healthcare (KOFIH), and Asiana Airlines.
The opening and ceremony was honoured by the presence of Mr Young Hyun Choi, Deputy Minister for Healthcare Policy, who presented the personal message of Mr Chin Young, Minister of Health and Welfare of the Republic of Korea; Mr Dong-seok Min, Secretary-General of the Korean National Commission for UNESCO; Mr Chul Lee, Vice-President of Yonsei University and President of Yonsei University Health System; and Ms Alissandra Cummins, Chairperson of the Executive Board. In addition, Mr Ban Ki-Moon, Secretary-General of the United Nations and Mrs Irina Bokova, Director-General of UNESCO, sent video messages for the opening ceremony.
PRINCIPLE OF NON-DISCRIMINATION AND NON-STIGMATIZATION
In accordance with the work programme of the IBC for 2012-2013, the main topic for this session is the Draft Report of the IBC on the Principle of Non-Discrimination and Non-Stigmatization, as set forth in Article 11 of the Universal Declaration on Bioethics and Human Rights. Throughout the session, and often late into the night, the Committee worked intensely on revising the draft report. The need to ensure that the report addresses this principle in a realistic and practicable manner by utilizing contextual examples that concretely illustrate entrenched or potentially discriminatory and stigmatizing outcomes within existing or emerging trends in the life sciences was reinforced. In its refinement of the draft report, it should be noted that the Committee decided to reiterate the potential discriminatory and stigmatizing consequences resulting from misuse of genetic information contained in biobanks; to highlight neglected tropical diseases as a crucial case of structural discrimination and social stigmatization stemming from the larger issue of access to medicines (this is of particular relevance to Priority Africa); and to focus on the discriminatory and stigmatizing effects of organ transplantation, both for donors and recipients. Further refinements were also made to sections of the draft report addressing HIV/AIDS, nanotechnology and neuroscience. The Committee was also requested by the Secretariat to reflect the gender perspective in the draft report, and include text where appropriate in this regard, in line with Priority Gender Equality.
The Committee established a roadmap for finalizing this report. A revised draft was prepared for discussion at the 8th Session of the Intergovernmental Bioethics Committee (IGBC) from 5 to 6 September 2013, after which, the comments of the IGBC were taken into consideration by the IBC before finalizing the report. The report was finalized by the Committee on 6 March 2014.
BIOETHICS IN ASIA AND THE PACIFIC: EXPERIENCES, PERSPECTIVES AND NEW ETHICAL CHALLENGES
A half day working session was devoted to discussing the bioethics concerns of the Asia and the Pacific region, with presentations of specialists from China, India, Japan and the Republic of Korea. This working session focused on two topics: personalized medicine; and the legislative measures in the region which operationalize the principles enshrined within UNESCO’s bioethics declarations.
Personalized medicine is the tailoring of medical interventions to the specific characteristics of each patient, realized through pharmacogenomics and genotype based treatments. Biobanks is the main tool for personalized medicine. An important development in this regard is the dropping cost of genomic sequencing. The ethical and human rights issues related to this rapidly developing field is therefore intricately linked with how biobanks are implemented, and include the right of self-determination (traditional informed consent procedure is inapplicable); the right to privacy and personal information, specifically genetic information and genetic particularities of blood relatives and ethnic groups and populations; the right to the best medical treatment available; and the risk of discrimination and stigmatization of individuals and ethnic groups, and the ethical dilemma posed by incidental findings.
In this regard, ELSI Research (Ethical, Legal and Social Implications) is a critical requirement for the continued development of genomic medicine, and needs to become an essential component of research funding agencies throughout the world. It was also emphasized that international collaboration is indispensable for successful ELSI Research. The recent (13 June 2013) and unanimous decision of the US Supreme Court to bar the patenting of naturally occurring genes also has wide implications on personalized medicine.On the topic of legislative measures, the case study of India was discussed specifically as related to Articles 14 (Social Responsibility and Health) and 15 (Sharing of Benefits) of the Universal Declaration on Bioethics and Human Rights, and as illustrated by the Indian Supreme Court’s recent decision (1 April 2013) to dismiss Novartis’ appeal for patent protection of a new version of its cancer drug Glivec.
Under this topic, the development of bioethics in China was also presented, where UNESCO’s documents and actions have contributed to the development of the bioethics infrastructure within the country; it was also highlighted that the main bioethical challenges for China at this moment include stem cell research and its clinical applications, the introduction of genetically modified rice of Chinese school children (golden rice issue), gene discrimination (specifically as related to Thalassemia), and the structural weaknesses of its national bioethics committee.
Finally, this topic also covered the development of bioethics in the Republic of Korea, including the legislative measures introduced on abortion, organ transplantation, human clinical trials, and life science research; it is also important to note that the Republic of Korea has introduced a specific legislation on bioethics and safety. It was also emphasized that the country is investing heavily in life science research, and legislative measures need to keep pace with the rapid developments in this field.
UNESCO BIOETHICS PROGRAMME: PAST, PRESENT AND FUTURE
The Committee welcomed the evaluation provided by the Secretariat on past achievements and lessons learned. It was strongly emphasized that the linkage between bioethics and human rights is a crucial aspect for the future work of the IBC and of the UNESCO Bioethics Programme. The Committee must remain vigilant on emerging issues that impact the principles of human dignity, equality and justice.
In this sense, the Committee underlined the importance of reinforcing the bioethics infrastructure of Member States, such as through the establishment of national bioethics committees, and several suggestions were put forth to consider proposing this as a measurable indicator for the post-2015 international sustainable development agenda.
The Committee also highlighted the importance of continuing the implementation of the principles of the Universal Declaration on Bioethics and Human Rights.
It was further reiterated that UNESCO’s actions in bioethics should address the needs of vulnerable populations, and that issues such as access to medicines, HIV/AIDS, equitable distribution of health care resources (brain drain, etc.), the health impacts of climate change, genomic research, etc. should remain on UNESCO’s radar.
The Committee expressed its support for efforts carried out by UNESCO to increase collaboration between UN agencies and with other international organizations. The decision of participants of the last Global Summit for National Ethics Committees (organized by WHO) to establish a Steering Committee in which UNESCO and WHO would participate in defining the agenda of future summits was very well received.
The Committee also recognized the importance of the IGBC as an intergovernmental body and expressed its willingness to continue collaboration with the IGBC in line with its Statutes and Rules of Procedure. At the same time, it strongly recommended that alternative methods be considered on improving the effectiveness of this collaboration, in order to foster open discussion and optimize the use of resources.
In considering alternatives for maintaining the relevant topics addressed both by the IBC and by COMEST, bearing in mind UNESCO’s current financial constraints, the Committee recognized the great deal of overlap between the mandates of the two statutory bodies, but also emphasized that there are unique differences. The IBC discussed the following two possibilities in terms of the future of both bodies:
- To cooperate closer with COMEST by holding one joint session a year; or
- To incorporate the topics covered by COMEST (most of them would apply for IBC) and take that into account in the current process of renewal of IBC membership. There was also consensus that even if they incorporate the topics of COMEST, the name of the Committee should be preserved as it would continue to address issues within the realm of bioethics, as per its current Statutes, and in order not to jeopardize the existing credibility and leadership of the Committee (branding).
The Committee also discussed and approved the idea of establishing a network of young bioethicists from around the world, for the purpose of promoting the education of future generations in bioethics through activities such as summer schools, with the direct involvement of members of the IBC in such an initiative. The Chairperson also put forth the idea of establishing an online platform to connect past, present and future IBC members in order to leverage a wide network of expertise in future reflections of the Committee, as well as in discussing emerging bioethical issues – the Secretariat has started exploring the possibility of creating a “community of practice” online platform within UNESCO’s IT infrastructure for this purpose.
The Final Report of the Session will be made available online soon.
Division of Ethics and Global Change
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