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Media Release
For Immediate Release

Paris, 10 June — Over 150 scientists, diplomats and interested members of the public paused today to commemorate and reflect on three important anniversaries that have dramatically shaped biomedical research and set the stage for the delivery of personalised healthcare. The event, "60 Years of DNA" held at the headquarters of the United Nations Educational Scientific and Cultural Organisation (UNESCO) in Paris, France and co-organised by the Human Variome Project and the UNESCO International Basic Sciences Program, celebrated the 60th anniversary of the discovery of the structure of DNA, and the 10th anniversaries of the completion of the Human Genome Project and the adoption of the International Declaration on Human Genetic Data.

In opening the event, Mr David Abraham, Chairman of the Board of Human Variome Project International, which operates the Project’s International Coordinating Office, reminded those present why these anniversaries deserve notice. “Genetics and genomics drastically impacts almost all aspects of human disease. 7 million children are born each year with a genetic disorder or birth defect; 90% of these children are from low income countries. We need better ways to share our genomic knowledge so that all people can share in the benefits of our common genetic heritage.”

The Human Variome Project is an international consortium of scientists and health professionals working to improve global health through the free and open sharing of genetic variation information. “The role of the HVP is to facilitate the collection, curation, interpretation and sharing of genetic variation information across the world,” said Abraham.

The Project has a proud working relationship with UNESCO. “Together we promote research to better understand and manage human disease, to share progress in human genetics across national boundaries and stimulate further breakthroughs,” said UNESCO Deputy Director-General, Mr Getachew Engida. “UNESCO is working to raise awareness among member states about the importance of genetic research especially for health. Governments and other players must invest far more in genetics and genomics. At the same time, we need greater cooperation across borders. Humanity has no choice but to move forward together.”

The event, hosted by the Permanent Delegation of the United Kingdom of Great Britain and Northern Ireland to UNESCO, featured addresses and presentations by four distinguished international scientists and clinicians, who spoke about the groundbreaking advancements over the last 60 years that have lead to our current ability to reliably diagnose and treat a large number of genetic conditions.

Professor Werner Arber, who was awarded the Nobel Prize in 1978 for the discovery of restriction enzymes, the chemical compounds that allow scientists to cut long DNA molecules at defined locations and ushered in an “age of gene technology,” recounted the steps that lead to his famous discovery. In speaking of the discovery itself, Arber remarked that he did not think it was groundbreaking at the time, merely “a good thing to know.”

Professor Michel Morange, noted scholar of the history of science, spoke on the “complex path to the double helix.” Although it is now seen today as one of the seminal discoveries in human genetics and molecular biology, the model of DNA’s structure that Watson and Crick proposed was not immediately accepted. Doubts about its accuracy remained for almost 30 years. Morange noted that these “doubts were so strong that even Crick proposed an alternative model [of DNA structure] in 1975.”

Professor Stefano Simplici, Chair of UNESCO’s International Bioethics Committee, spoke of our genomes as the “heritage of humanity, not only in a ‘symbolic’ sense,” and reminded the audience that “the human genome underlies the fundamental unity of all members of the human family.” In doing so, he recalled the wording of the International Declaration on the Human Genome and Human Rights, adopted by UNESCO in 1997 that states “The human genome in its natural state, shall not give rise to financial gains.”

“The human genome and its variations must not become the private property of one country, one group, one country. Scientists should be able to carry out their research and share their results with integrity and openness” said UNESCO DDG Engida, echoing Semplici’s talk. The event concluded with Professor Sir John Burn, consultant clinical geneticist and Lead Clinician for the NHS in the North East of England, offering a view into the future of medicine. “The expansion of sequencing capacity is astonishing,” said Sir John, referring to mankind’s ability to sequence the DNA in an individual's genome. “The third person in the world to have their genome sequenced was a woman in 2008. It cost about €40,000. Had it been done in 2000, it would have cost over €100 million. I confidently believe that in a few years we will sequence a genome for €100.” In the future that Sir John envisioned, this capacity to produce sequence data will allow clinicians and researchers to readily uncover the specific changes in our DNA as well as the combination of dietary, environmental and lifestyle factors that taken together cause almost every disease imaginable. However he warned that, “Sorting through all of these factors requires us all to work together. We all have a responsibility to integrate.” Leaving the attendees with a sobering thought, Sir John reminded the audience that “failure to share knowledge kills people.”

Accompanying the event, a public exhibition of artefacts and materials chronicling the history of human genetics and genomics will run until the 18th of June at the UNESCO headquarters building. UNESCO and the Human Variome Project are planning to tour the exhibition internationally over the course of 2013.

ENDS

About the United Nations Educational, Scientific and Cultural Organisation

UNESCO works to create the conditions for dialogue among civilizations, cultures and peoples, based upon respect for commonly shared values. It is through this dialogue that the world can achieve global visions of sustainable development encompassing observance of human rights, mutual respect and the alleviation of poverty, all of which are at the heart of UNESCO’S mission and activities.

The broad goals and concrete objectives of the international community – as set out in the internationally agreed development goals, including the Millennium Development Goals (MDGs) – underpin all UNESCO’s strategies and activities. Thus UNESCO’s unique competencies in education, the sciences, culture and communication and information contribute towards the realization of those goals.

UNESCO’s mission is to contribute to the building of peace, the eradication of poverty, sustainable development and intercultural dialogue through education, the sciences, culture, communication and information.

UNESCO has been promoting international cooperation and capacity building in science since 1945. The Organization also addresses ethical issues concerning the use of scientific knowledge and its applications and advocates the importance of utilizing basic research to meet societal needs and strengthening links between science, policy and society.

About the Human Variome Project

The Human Variome Project is an international consortium of scientists and health professionals working to improve global health through the free and open sharing of genetic variation information.

The Human Variome Project acts as an umbrella organisation across multiple countries, institutions and initiatives. It works to encourage communication and collaboration around it central vision—the improvement of global health through the sharing of genomic knowledge.

The Human Variome Project has four roles: to establish and maintain the standards, systems and infrastructure necessary for the worldwide collection, curation, interpretation and sharing of information across the genome; to advocate and promote ethical behaviour in the field of medical genetics and genomics; to share knowledge about our genome and its function in determining health; and to assist individuals and nations build their capacity to address genetic aspects of individual and global health.

Media Contact:
Timothy D. Smith
tim@variome.org 
+61 (0)419 357 589
http://www.humanvariomeproject.ort/

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