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Formalising our Relationship with the World Health Organisation

One of the most common questions that we get asked when we introduce the Human Variome Project to new people is, "What's your relationship with the World Health Organisation?" It's an easy question to answer, as the Project and WHO have been working together since the beginning. WHO sponsored and attended the very first meeting of the Project, and over the years we've worked with them on a number of initiatives, including the Grand Challenges in Genomics for Public Health in Developing Countries. But, while fruitful, our relationship has always been an informal one. Until now.

Earlier this month, Human Variome Project International Ltd (the legal structure that represents our Consortium members) signed a formal Memorandum of Understanding with WHO that sets out the formal relationship between WHO and the Human Variome Project. In essence, the agreement sets out how the two will work together to assist WHO in achieving its goal of providing leadership in global health matters that relate to human genomics, with a particular emphasis on service delivery and safety in low- and middle-income countries.

This marks a new initiative for WHO. While it has always had a small program on genetics and health, focusing mainly on genetic diseases for some time, this new program marks a change in focus to the broader issue of human genomics and public health. The public health implications of advances in human genetics and genomics are of increasing importance to all professionals working in the field.

Our agreement with WHO is a significant complement to our existing status as an NGO with operational status with UNESCO as it links the Project and our Consortium members to the world of international health. WHO is responsible for the key issues affecting health including shaping international health research agenda, setting norms and standards for health matters and assessing health trends. The Human Variome Project's key contribution to these efforts will be to give a voice to the various health professionals working in human genetics and genomics, particularly those in low- and middle-income countries where opportunities to shape policy are sometimes weak.

The key mechanism for this will be the HVP Country Nodes and the International Confederation of Countries Advisory Council. The Project has 22 formally constituted Country Nodes together with another six countries that are in the process of seeking membership. These are found in all regions of the world. The interest in HVP Country Nodes is growing fast as researchers, clinicians and health bureaucrats increasingly realise the importance of national bodies to oversee the transparent and open sharing of variant data and information between countries.


The agreement sets out a number of specific areas for collaboration:

  • Creating a co-ordinated international electronic forum to facilitate discussion and interaction between experts, including health professionals, researchers and academics, on matters related to human genomics, global health and service delivery and safety
  • Organizing international meetings on matters related to human genomics and public health
  • Providing technical and normative expertise on matters related to human genomics and public health

Initially, the issues to be focused on are likely to include:

  • The ethical and regulatory issues arising from international sharing of human genomic and genetic information;
  • The development of cost-effective, safe and quality health services in low/middle income countries arising from the application of innovations in human genetics and genomics to these diseases;
  • The need to build capacity in low/middle income countries to support the delivery of these innovative, cost-effective services;
  • The need to raise awareness in human genomics and genetics among public health officials, particularly in Ministries of Health

Should you wish to have any more information or to discuss becoming more involved in these activities, please feel free to contact me via the comments below or by email

Photo credit: WHO/Pierre Albouy

Tagged in: WHO


  • Guest
    Cristina Camprubí Friday, 23 January 2015

    Good morning,
    for sure this is a great step for the HVP goal!
    Although I'm a new member of the HVP I know your efforts. That's the reason why I joined to the project. I'm workind in the development of my start-up that will offer to professionals and patients different services related to genetics and epigenetics. One of them is to help Spanish professionals to manage the variants found in their patients, promoting the importance and beneficts of sharing their data freely and openly. I will put lots of effort to work in this field focussing them on the HVP Spanish Node.
    ...step by step I will do my part to contribute to HVP.

    Reply Cancel
  • Timothy D. Smith
    Timothy D. Smith Wednesday, 28 January 2015

    Great to hear Cristina! Welcome to the Project. And great to know that you'll help build the Spanish Node. Feel free to get in touch with me if you need any support.

  • Shan Zienolddiny
    Shan Zienolddiny Friday, 23 January 2015

    Good morning,
    I am so pleased to see this News as it is an important step towards including the Genetic knowledge into the context of Health-related activities of WHO. It is also important that Genetic information and its impact on Health comes into the Guidelines of the WHO. I would congrtulate all those who have worked hard and finally suceeded and also the members of HVP.
    Shan Zienolddiny
    Senior Scientist
    Oslo, Norway

  • Timothy D. Smith
    Timothy D. Smith Wednesday, 28 January 2015

    Thanks Shan. It's been a long process, and we're just at the beginning, but it is terribly exciting. Thanks for joining the Consortium too, by the way. Hopefully we'll get to meet at and HVP event in the near future. In the meantime, feel free to reach out to me if you want to get more involved.

  • Shan Zienolddiny
    Shan Zienolddiny Wednesday, 28 January 2015

    Thanks Tim. Surely we will meet at some event. I would be happy to help if any thing I may could do for HVP.

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