New global pact on responsible use of genomics for health

6 June 2013

A new global alliance is setting out to ensure that the benefits of genomics sequencing for health are realised as promptly and efficiently as possible - whilst protecting patients and research participants.

Recent technological advances have created an explosion in genomic information and new opportunities for biomedical research and development as increasing levels of genomic and clinical data from individuals and populations around the world are amassed. Hopes are high that these data will pave the way for exciting medical advances in improved methods for diagnosis and prognosis, screening and risk prediction, treatment and monitoring.
 
However, at present there are no agreed standards for the best ways in which to share this invaluable data effectively and responsibly, maximising the potential for medical progress whilst simultaneously providing suitable protection for the autonomy and privacy of the people who have contributed their data.
 
international partner organisations to develop and promote policy solutions including harmonised regulatory frameworks to facilitate genomic and clinical data integration in a responsible manner. The partnership is inspired by the example and achievements of the World Wide Web Consortium (W3C) and the Human Genome Project (HGP). Member organisations agree to adhere to the core principles of the alliance, which are based on principles of respect, transparency, accountability, inclusivity, collaboration, innovation and agility.
 
International partner organisations are drawn from healthcare providers, research institutions, disease advocacy bodies, life science and information technology companies. They include BGI-Shenzhen, the US National Institutes of Health (NIH), the American Society of Human Genetics (ASHG), the European Society of Human Genetics (ESHG) and in the UK, the National Institute for Health Research (NIHR), Cancer Research UK (CRUK), the Wellcome Trust and Wellcome Trust Sanger Institute (WTSI) and the PHG Foundation (see press release and the Global Alliance fact sheet). It is hoped that many more will join the alliance as it begins work to lay the necessary foundations for a new era of genomic medicine.
 
 
 
 
 

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