Human Variome Project – Human Variome Project Chinese Node Joint Statement
The international Human Variome Project Consortium and the Human Variome Project Chinese Node
Recognising that our genes are fundamental to human life and diversity and are a common thread that binds all peoples and cultures,
Emphasising that the free and open sharing of information on genetic variations and their effects will improve human health by enabling faster, cheaper and more accurate diagnosis, therapy and treatment,
Recalling that Article 1 of the UNESCO Universal Declaration on the Human Genome and Human Rights states, “The human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity,”
Noting that the mantra of the Human Variome Project is sharing data · reducing disease, and
Further recognising that increased knowledge of genetic variation and its effect, regardless of the origin, will provide insight into the causes of both common and rare diseases that affect people from all countries,
Make the following declarations.
- We shall work together to promote genetic research that improves human health and enable the free and open sharing of the results of that research.
- We will work in partnership with the United Nations Educational, Scientific and Cultural Organisation on education and capacity building in genetics and genomics and the health implications of genetic variations.
- We will pursue joint projects with the World Health Organisation that improve public health programmes.
- The Human Variome Project shall abide by the articles of the UNESCO Universal Declaration on the Human Genome and Human Rights and International Declaration on Human Genetic Data.
- Members of the Human Variome Project shall work to ensure that all genetic data is collected and curated to the highest possible standard and shared freely and openly with the world. No member of the Human Variome Project shall restrict access to information on the human genome and its variations through the application of patents or attempt to monopolise that information for commercial purposes.
- Studies in genetic variation should have no borders and not discriminate against any individual or people, regardless of nationality, religion, culture, age or wealth.
- Members of the Human Variome Project shall conduct themselves with the highest regard to professional ethics and ensure that the protection of patient privacy is paramount in all activities. Members of the Human Variome Project shall respect every individual, family, culture, tradition and value.
- The Human Variome Project abhors the use of genetic information to adversely affect human health or to discriminate against an individual or population.