Vision E-mail

Our Vision is to be one of the world’s most significant catalysts for the reduction in human disease in the 21st century by:
facilitating the establishment and maintenance of

  • standards;
  • systems; and
  • infrastructure

for the worldwide collection and sharing of all genetic variations effecting human disease.

The Human Variome Project Consortium envisions a world where the availability of and access to genetic variation information is not an impediment to diagnosis and treatment; where the burden of genetic disease on the human population is significantly decreased; and where the sharing of genetic variation information is standard clinical practice.

The Consortium also envisions a future where thousands of individuals and groups across the world are working together to ensure universal access to all genetic variations effecting human disease.

If that envisioned future was today – that is, if all the current global data on genetic variations effecting human disease was able to be collected and shared immediately, then many, many millions of the world’s people and their families would benefit from the faster diagnosis and the more accurate prognosis of their disease and the better treatments this information can be used to create.

That envisioned future is not today, but by working together towards this Vision, it can become a reality much sooner than we think.

Our Core Purpose

Our Core Purpose is to alleviate needless human suffering for many millions of the world’s people by collecting, organising and sharing data on genetic variation.

If diagnosis is much slower than otherwise possible and worse still, if prognosis is inaccurate, then millions of people will suffer needlessly. They will not only suffer from the physical effects of disease, but they and their families will also suffer from the significant psychological, emotional and economic effects.

The Human Variome Project Consortium is motivated by the knowledge that by working together, we will be able to significantly reduce such needless physical, psychological, emotional and economic suffering for millions of people.

Our Core Values

The following Core Values will guide and direct all our actions and behaviours and be embedded in our systems and processes, the way we make decisions and the way we deal with each other, be they Consortium members, other stakeholders and the global community. Our Core Values are as follows:

Collaboration we recognise that success will come by acting together with the widest possible stakeholder group. We will work hard to understand, respect and take account of the differing needs of each.
Celebration we will give credit and acknowledge all contributions made, celebrate key milestones, including all diseases that are diagnosed, treated and prevented, as a result of the sharing of data.
Respect we will work hard to understand and respect the varying needs of all stakeholders. We will have the utmost respect for the privacy and confidentiality of patient information and will be serious about relevant ethical, legal, political and social issues.
Inclusion we will include all countries, all peoples and all disciplines without discrimination.
Service we exist to serve each other, the Consortium as a whole, its members, the community and in particular, to serve those now and in the future with a disease that can be more easily diagnosed, treated and prevented as a result of the sharing of data.
Professionalism we will adopt the highest standards in all we do. Data accuracy and operational excellence will be paramount.

The Vision and the Core Purpose of the Human Variome Project will only be fully achieved if we remain true to our Core Values. This will require collaboration on an unprecedented scale, the utmost respect for all stakeholders and all our collective actions being undertaken in a true spirit of service. We will also continue to be motivated by our Vision and Core Purpose.

Our Mantra/Tagline

Our Mantra and our Tagline for our logo will simply be sharing data • reducing disease.

Our Mantra will inform our numerous stakeholders why we exist and continue to reinforce our primary focus in a simple way.

Put simply, our aim is the sharing of data which will result in reducing disease.

Our Golden Goal

Our Golden Goal is to have facilitated the sharing of data on over 1,000,000 cases of genetic disease by December, 2015.

We will seek to add urgency to our efforts by setting aspirational goals three to five years in the future. We will stretch ourselves and our stakeholders to come up with new plans and ways of sharing more data and therefore reducing more disease.