International Bioethics Committee warns against new risks of discrimination induced by scientific progress
At the kind invitation of the Government of the Republic of Korea, the 20th session of the International Bioethics Committee of UNESCO (IBC), held in Seoul (Republic of Korea), from 19 to 21 June 2013, attracted more than 100 participants from 33 countries and external partners to discuss the potential new risks of discrimination induced by the advances in biomedicine. On this issue, a new IBC report had been adopted and will be submitted to the Member States of the Intergovernmental Bioethics Committee to meet at UNESCO Headquarters in Paris, on 5 and 6 September 2013.
First opportunity in 2013 to celebrate the 20th anniversary of the International Bioethics Committee (IBC) and of UNESCO’s Bioethics Programme, the 20th session of the IBC was also the first time that such an event was held within a university hospital setting: the Yonsei University’s Severance Hospital.
More than symbolic, the choice of this setting offered the best illustrative link between the practice of life sciences and medicine with the bioethical reflection of the Committee, and raised important reminders of the true purpose of its work.
The new risks of discrimination and the new responsibilities induced by the advances in biomedicine (biobanks, access to drugs, transplant and organ trafficking, as well as tissue and cell trafficking, neuroscience, HIV/AIDS and nanotechnologies), were the focus of discussions at this 20th session which attracted more than 100 participants from 33 countries and many external partners.
PRINCIPLE OF NON-DISCRIMINATION AND NON-STIGMATIZATION
On top of the agenda of this session was the discussion of a Draft Report 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, the independent experts, members of the IBC, worked intensely on revising the draft report. In its refinement of the report, the Committee decided to
- reiterate the potential discriminatory and stigmatizing consequences resulting from misuse of genetic information contained in biobanks;
- highlight neglected tropical diseases as a crucial case of structural discrimination and social stigmatization stemming from the larger issue of access to medicines; and
- focus on the discriminatory and stigmatizing effects of organ transplantation, both for donors and recipients.
Existing or emerging discriminatory and stigmatizing trends related to HIV/AIDS, nanotechnology and neuroscience are also addressed. The revised draft report will now be submitted to Member States of the Intergovernmental Bioethics Committee who will meet at UNESCO Headquarters in Paris, on 5 and 6 September 2013.
BIOETHICS IN ASIA AND THE PACIFIC: EXPERIENCES, PERSPECTIVES AND NEW ETHICAL CHALLENGES
Amongst other issues on the agenda, a working session devoted to the bioethics concerns of the Asia and the Pacific region explored two main topics: the 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 are 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 a pharmaceutical company’s appeal for patent protection of a new version of its cancer drug.
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 highlighted that currently the main bioethical challenges for China include stem cell research and its clinical applications, the introduction of genetically modified rice for 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, life science research, as well as on bioethics and safety. It was emphasized that the country is investing heavily in life science research, and legislative measures need to keep pace with the rapid developments within this field.
UNESCO BIOETHICS PROGRAMME: PAST, PRESENT AND FUTURE
To commemorate the 20th anniversary of the Committee and 20 years of UNESCO’s commitment to Bioethics, another special session on UNESCO’s Bioethics Programme offered the opportunity to discuss the main achievements, lessons learned, challenges and suggestions to move forward; as well as to reflect on the role of bioethics in the post-2015 international sustainable development agenda.
Designed to stimulate the IBC's reflection on the best way to increase the relevance and impact of the Organization’s activities in the years to come, this working session reached its goal: the Committee seized the occasion to strongly emphasize that the linkage between bioethics and human rights is a crucial aspect for future work of the IBC and UNESCO's Bioethics Programme.
The Committee must remain vigilant on emerging issues that impact the principles of human dignity, equality and justice. In this context, the IBC underlined the importance of reinforcing the bioethics infrastructure of Member States, among others through the establishment of national bioethics committees, and several suggestions were put forth to consider proposing this as a measurable indicator related to 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.), genomic research, etc. should remain on UNESCO’s radar.
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 and collaboration amongst the next generation of bioethicists through activities such as summer schools, with the direct involvement of IBC members in such an initiative. The Chairperson, Professor Semplici, also proposed to establish 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.
IBC WORK PROGRAMME FOR 2014-2015
In the course of this session, the independent experts members of the IBC engaged in a preliminary reflection on their work programme for 2014-2015 deciding that:
- The IBC will develop Article 15 (Sharing of Benefits) of the Universal Declaration on Bioethics and Human Rights (UDBHR). This article will be linked to Article 27 (the right to share in scientific advancement and its benefits) of the Universal Declaration of Human Rights (UDHR) and Article 15 (the right to enjoy the benefits of scientific progress and its applications) of the International Covenant on Economic, Social and Cultural Rights. It was further decided that the report will address the sharing of benefits and the production of knowledge, in order to elaborate Article 15 of the UDBHR, and to contribute to the elaboration of the normative content of Article 27 of the UDHR. This topic reflects the links between bioethics and social justice as a key element identified for post-2015 goals and sustainable development.
- In response to the rapid advancements in genetics and genomics, the IBC will update its reflection on the issue of human genome and human rights, building upon the considerable work done on this topic by the Committee in the past, and in particular, taking into account the Universal Declaration on the Human Genome and Human Rights (1997), the International Declaration on Human Genetic Data (2003), and the Universal Declaration on Bioethics and Human Rights (2005). This is a way for the IBC to perform its task of constant monitoring of the scientific advancements and the new ethical issues that it raises
The Committee also endorsed the idea of UN agencies working in the field of bioethics to coordinate their actions around the theme of Ethics and Governance of Converging Techno-sciences for Equitable Societies, and expressed its willingness to cooperate and actively collaborate if this initiative should materialize through member organizations of the UN Interagency Committee on Bioethics (UNIACB), where UNESCO is serving as Permanent Secretariat. In this regard, the IBC indicated that the term “equitable societies”, as opposed to “sustainable societies”, was a more precise concept in achieving equity and justice within the framework of sustainable development.
Co-hosted by the Ministry of Health and Welfare of the Republic of Korea, the 20th IBC session was 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 the 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 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 UNESCO's 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 this occasion.
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