Sharing of benefits, human genetics and the Ebola virus epidemic debated by UNESCO’s committees on bioethics

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© Gates Foundation

From 9 to 10 September 2014, the International Bioethics Committee of UNESCO (IBC) and the Intergovernmental Bioethics Committee (IGBC) held a public discussion on two primary topics: Article 15 of the Universal Declaration on Bioethics and Human Rights on the sharing of benefits, and the human genome and human rights.

Furthermore, recognizing UNESCO’s unique role in bioethics within the international community and the current state of emergency posed by the Ebola health crisis in West Africa, the IBC and the IGBC adopted a joint statement which seeks to reinforce principles included in the Universal Declaration on Bioethics and Human Rights, and strengthen international support for ending the Ebola virus epidemic.

Consideration of the two main topics of the Joint Session is pertinent to current developments in the world. The issue of benefit sharing poses serious ethical issues that must be addressed in order to advance just and equitable sharing of scientific, medical and technological benefits. The principle calls for the benefits resulting from scientific research and its applications to be shared with society as a whole, and signals for scientific knowledge to be respected as a common public good.

Intuitively, the notion of benefit sharing is appealing given the immense amount of good that can be accomplished by sharing the fruits of scientific research and innovations in technology, particularly in the areas of health, with people around the world. However, the principle of benefit sharing is theoretically extremely expansive, and cannot be implemented without first defining its scope. Discussion on this issue therefore sought to address practical questions of application in order to help build a clear foundation upon which the principle of benefit sharing may be effectively realized.

Discussion of the human genome and human rights raises fundamental questions about the nature of genetic research. Recent developments in genetic technology, such as mitochondrial donation in human embryos and direct-to-consumer genetic testing, have generated controversy around the world. As it becomes faster and less expensive to decode our genes, genetic sequencing, even whole-genome sequencing, are becoming increasingly common. On the one hand, these developments are phenomenal, and on the other hand, there are many serious ethical issues that are raised, for example, access to personal genetic information, the problem of incidental findings and the protection of personal genetic information stored in biobanks. Issues relating to the use of techniques that involve nuclear transfer to prevent the birth of children with serious disorders were of particularly significant concern.

The ethical challenges posed by these issues are not easily resolved. They require careful consideration about what we owe each other, given our unique identities but common humanity, genomes, and health challenges. Breakthroughs in our understanding of scientific knowledge should be celebrated and utilized, but not at the expense of fundamental values.

The coming together of the IBC and IGBC also provided the opportunity to contribute to revision of the Recommendation on the Status of Scientific Researchers (1974), and to observe a presentation by the Council of Europe on ethical aspects of converging technologies. The Recommendation, which was intended to establish guidelines for the obligations between scientific researchers and society, was developed at a time when there was great tension surrounding the concepts of academic freedom and the open communication of scientific research. Given changes in the geopolitical, economic and cultural context of research, and the fact that research is now often conducted across borders and at an international level, it became necessary to rethink the approach to defining the mutual obligation between scientific researchers and society.

The presentation on converging technologies enabled insight into the many ethical implications associated with advances in nanotechnology, biotechnology, information technology and the cognitive sciences. Importantly, presenting this issue provided an opportunity for United Nations agencies and intergovernmental organizations to share information about their activities in bioethics and thereby foster closer coordination on bioethics at the international level.

The work of the IBC and IGBC therefore seeks to contribute to a global humanistic vision where the pursuit of scientific progress and innovation is consistent with the promotion of human values and human rights.