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Media Release
For Immediate Release

Q1: Why is the Human Variome Project Meeting?

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. Every two years the Consortium meets to discuss, debate and decode
on plans and priorities for the next two years.

These meetings have been occurring since the Human Variome Project was initiated in 2006. Since 2010, the meeting has been held at the headquarters of the United Nations Education, Scientific and Cultural Organisation in Paris, France.

Q2: What will happen at the meeting?

The 4 th Biennial Meeting of the Human Variome Project will run for five days from the 11th to 15th June, 2012. Over the five days of the meeting Consortium members will discuss and debate a number of topics that are structured around the four pillars of activity of the
Human Variome Project:

  1. Setting Normative Function
  2. Behaving Ethically
  3. Sharing Knowledge
  4. Behaving Ethically

The meeting will be composed of three days of plenary panel discussion, a day of satellite meetings organised by members of the Project Consortium, and a day devoted to meetings of the Project’s two Advisory Councils and International Scientific Advisory Committee. At the beginning of the meeting, the Human Variome Project’s Project Roadmap 2012-2016—the Project’s strategic plan for the next four years, will be released.

Q3: What is UNESCO’s role during the meeting?

The Human Variome Project has worked closely with UNESCO since the Project was established in 2006. UNESCO provides valuable support to the Human Variome Project through its experience in creating partnerships, capacity building and fostering cooperation between centres of excellence. In 2011, UNESCO recognised the Project’s close working relationship by recognising the Human Variome Project as an official partner.

Q4: What is genetic variation information?

Genetic variation information is information about the changes that occur in our DNA and what effect that has on our bodies. Not all genetic variations are the same. A change at one position in our genome may cause a particular disease, like cystic fibrosis or maple syrup urine disease, while a similar change at a different position may have no discernible effect whatsoever.

Q5: Why is sharing this information important?

Because the effect of each individual genetic variation on our bodies can differ widely, we need to have accurate information on what these effects are in order to reliably diagnose patients with genetic diseases or who are at risk of developing a disease. Unfortunately, it is very difficult to predict the effect of a particular variation without evidence from previous cases. Sharing information on genetic variations and their effect around the world will allow us to assemble a comprehensive body of knowledge about the human genome, how it works and what happens when it changes. This knowledge will allow us to more accurately diagnose more patients more quickly and may one day lead to better treatments and cures for the some 20,000 genetic diseases that affect people all around the world.


Media Contact:
Timothy D. Smith
+61 (0)419 357 589


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