21st Session of the International Bioethics Committee (IBC)

Joint Session of the IBC and the Intergovernmental Bioethics Committee (IGBC)

UNESCO Paris, France, 8-12 September 2014

Summary of the Sessions

The 21st (Ordinary) Session of the IBC and the Joint Session of the IBC and the IGBC were held at UNESCO Headquarters in Paris from 8 to 12 September 2014, and attracted approximately 252 participants from 78 different countries, gathering representatives of Member States as well as representatives of international organizations and NGOs, and other external partners.

32 of the 36 IBC members attended the sessions, while 33 of the 36 IGBC Member States were represented as follows: Argentina, Brazil, Cameroon, Canada, Côte d'Ivoire, Denmark, Dominican Republic, France, Germany, Georgia, Greece, Guatemala, India, Indonesia, Jordan, Kenya, Kuwait, Lebanon, Lithuania, Madagascar, Mexico, New Zealand, Niger, Pakistan, Republic of Korea, Russian Federation, Singapore, Slovakia, Thailand, Togo, Tunisia, Turkey, and Zambia.

In accordance with the work programme of the IBC for 2014-2015, the two main topics that were discussed during these Sessions were the elaboration of the principle of the sharing of benefits, as set out in Article 15 of the Universal Declaration on Bioethics and Human Rights (2005), and the update of the IBC’s reflection on the human genome and human rights.

In addition, the revision of the Recommendation on the Status of Scientific Researchers (1974) was included in the Sessions to ensure that the comments of the two Committees are taken into consideration in this process. The outcome of this reflection fed into the discussion of COMEST on this item during its Extraordinary Session in October 2014. This represents a first step towards closer collaboration between the IBC, the IGBC and COMEST.

Furthermore, an item on the current global reflection on addressing the ethical aspects of converging technologies was included on the agenda, and was presented by the Council of Europe’s Committee on Bioethics. It should be pointed out that this item is not a part of the IBC’s work programme, and was included to ensure that the IBC and the IGBC were informed on an emerging discussion currently taking place within the international community. It is envisioned that such global reflection items will be included on the agenda of future sessions as a way of strengthening the sharing of information by the members of the UN Interagency Committee on Bioethics (UNIACB) with the IBC and the IGBC.

Revision of the Recommendation on the Status of Scientific Researchers (1974)

It was generally agreed that revision of the Recommendation should be driven by the principle of social responsibility. Within this context, both committees drew particular attention to a lack of adequate reference to the relationship between scientists and society, and specifically, the obligations scientists owe to society. Relevant to this point is the comment that the text fails to instill an ethics sense in scientists by the absence of any recommendation for scientists to adopt some kind of common code of ethics or to be trained in the ethics of science. It was also suggested that a focus on the science-society relationship is supported by the need to promote principles of global justice, as science, technology and innovation should be used for the benefit of all society, with particular regard to the divide between the rich and poor and between those who have access to technological advancements and those who do not.

The comments expressed could be categorized into eight main themes:

  • vulnerable populations in research, including the issue of gender inequality in research, and the working conditions of women scientists;
  • engagement and cooperation within the international community, including the problem of brain drain;
  • scientific education and open access, emphasizing the need to ensure fair access to scientific knowledge and to promote scientific literacy, while balancing between the right to benefit from the discovery of new knowledge, and the societal need to have access to such knowledge;
  • freedom of research, as a fundamental principle to be adequately taken into account in the revision of the Recommendation;
  • improper use of scientific research, including issues of dual use for terroristic purposes, fraud and research secrecy;
  • protection of intellectual property rights;
  • policy-making and the role of scientists, especially the adequate translation of research findings into policy;
  • and the relevance of the social sciences, especially the need to ensure closer linkage with the natural sciences in the revision of the Recommendation.

Participants also made some general comments on the structure of the text.

See also

  • Call for Advice: Revision of the UNESCO Recommendation on the Status of Scientific Researchers

Elaboration of the Principle of the Sharing of Benefits (Article 15 of the Universal Declaration on Bioethics and Human Rights)

There was strong consensus that Article 15 is to be understood in relation to all articles of the Declaration and in that sense is framed within the broad concept of human welfare and linked inextricably with principles of global justice. It was therefore considered that the overarching purpose of Article 15 is to share the benefits of scientific research and its applications for the overall promotion of the health and wellbeing of society, and in particular, vulnerable populations. The need to reinforce one ethical standard for all populations was also clearly underlined. A number of participants also specified that Article 15 focuses on scientific knowledge in the life and biomedical sciences, and the type of scientific knowledge that comes within the meaning of this article is that which can be used for the benefit of society.

It was also generally agreed that a clear distinction should be made between sharing the benefits of research with the wider society and the sharing of benefits with individual research participants, both of which are espoused by Article 15. Different views were expressed regarding the role of intellectual property (IP) rights in the sharing of benefits: some emphasized the need for a fair balance between IP rights and benefit sharing; some suggested that IP rights should not be a consideration in a discussion on Article 15, and that the interpretation of this principle should be driven by higher humanistic values related to the promotion of health and wellbeing; while some others suggested that IP rights are consistent with benefit sharing as their use is a means to promote the production and application of scientific knowledge.

It was emphasized that engaging and cooperating with the community is an important element, especially in terms of the communication of benefits and risks of research in order to clearly establish potential benefits that could be shared. Several participants also pointed to the role of pharmaceutical companies, universities and other research funding bodies in the sharing of benefits, suggesting that there is a need for clearer understanding of the obligations such institutions have in conducting clinical trials, particularly in developing countries, and of the extent to which market forces dictate the sharing of benefits by pharmaceutical companies in cases of rare health issues.

During its private meetings, the IBC established its working group on this topic and agreed on a preliminary roadmap for developing its report. It was decided that the report should briefly outline the history of the principle of benefit sharing, and specify the two overlapping perspectives of Article 15: the perspective of society and the international community in general, and the perspective of the individual directly involved in research.

The IBC further agreed that the importance of gender equality should be made clear in every chapter of the report. The Committee also agreed, on a preliminary basis, that the report should cover people and groups participating in research, including improper inducement and the roles of various stakeholders involved, double standards, the burden of participating in research, and assistance to persons and groups that have taken part in research; sharing of benefits as participation and not only top-down beneficence, including the concept of solidarity (Article 13 of the Declaration), capacity building, brain drain, empowerment and open access; and access to health care and the sharing of benefits with society and the international community as a whole, including intellectual property rights, science education and information, good governance structures, adaptation of appropriate technologies, and transnational practices (Article 21 of the Declaration).

Updating the IBC’s reflection on the human genome and human rights

There was general consensus that updating the IBC’s reflection in this area is of particular relevance considering the rapid advancements in human genetics over the past decade. It was emphasized that it is now easier, faster and cheaper to sequence the entire human genome, which has given rise to bioethical concerns related to incidental findings, mass genomics and universal screening of the human population. While genetic sequencing is important in identifying predispositions toward certain diseases, it was stressed that having a genetic predisposition does not necessarily mean that the disease will manifest itself, which is dependent on environmental and lifestyle factors.

The Committees also agreed that more public awareness and regulation is needed on Direct-To-Consumer (DTC) genetic tests, which is further complicated by the fact that these tests can be made available across national boundaries, making enforcement of any potential regulations for DTCs very difficult without international consensus. With regards to mitochondrial donation, it was emphasized that there should be a clear ethical line between genetic manipulation to select desired qualities in a child, and genetic intervention to prevent a child from having a serious genetic disease.

Furthermore, concerns about eugenics also necessitate clear limits for this area of scientific application. On the issue of biobanks, bioethical concerns that were identified include data protection and privacy, consent, incidental findings, and the possible sharing of metadata from biobanks across the scientific research community.

During its private meetings, the IBC established its working group on this topic and agreed on a preliminary roadmap for developing its report. The Committee agreed, on a preliminary basis, that in addition to a general introduction of the topic, the report would address the technical advancements and related ethical challenges in human genetic analysis, including institutional and transnational framework for genetic research; as well as analyze selected areas of application, including DTC tests, non-health care related analysis, personalized/precision medicine, biobanks, Personal Genome Project (participatory medicine), non-invasive pre-natal diagnosis, somatic nuclear transfer, spindle- and pronuclear transfer (mitochondrial diseases), and gamete formation from iPS-cells.

It was further agreed that recommendations drawn from the analyses of the selected areas of application will be made in light of the principles enshrined in the Universal Declaration on the Human Genome and Human Rights (1997) and the International Declaration on Human Genetic Data (2003), including whether these principles are still sufficient for today’s context.

Global Reflection: Addressing the Ethical Aspects of Converging Technologies

This session was presented by Dr Anne Forus, Chairperson of the Committee on Bioethics of the Council of Europe, and focused on the Committee’s ongoing work in addressing the ethical aspects of the rapid convergence in nanotechnology, biotechnology, information technology and cognitive science. It was pointed out that there is a need to carefully note how the outcomes related to the convergence of these technologies are being framed and how ethical issues are being perceived in the media since this will greatly influence the public.

A key concern raised is how to evaluate these convergences technologically and ethically, especially since these innovations span across different scientific fields.

A number of participants suggested that a new kind of governance, including global governance, might be needed to address the ethical issues of converging technologies, either through new regulatory bodies or smarter approaches to regulations.

It was further suggested that researchers in converging technologies should be involved in the creation of any governance framework since they are in a better position to fully grasp the ethical challenges that might arise from their research.

It was pointed out that many developing countries are deploying these new technologies, and that any ethical assessments of how such innovations are evolving over time should be widely shared. In this regard, the issue of ensuring a risk-benefit balance when developing converging technologies and the need to promote sharing of benefits of such technologies were also emphasized.

The importance of putting the precautionary principle in place for all developments was also highlighted, especially since there is still a lack of scientific knowledge and data regarding these innovations. Moreover, the emphasis on education, improvement of scientific journalism and public support regarding these new technologies were also stressed.

Statement of the Joint Session of the IBC and the IGBC on the Ebola Virus Epidemic

At the initiative of the French Delegation to the IGBC, the Joint Session of the IBC and the IGBC adopted by acclamation a statement expressing solidarity with ongoing international efforts to respond to the Ebola virus epidemic in West Africa. The statement seeks to reinforce the principles enshrined in the Universal Declaration on Bioethics and Human Rights, and to strengthen international support for ending the Ebola virus epidemic. In particular, it also highlights the need to take into account the ethical, social and cultural dimensions of the affected countries when addressing this international public health crisis, in order to ensure an ethical management of the epidemic, a point that was strongly emphasized by many members of the IBC and the IGBC.

The Final Report of the Session will be made available online soon.

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