February 19, 2015
The US President has proposed to launch a multiagency initiative in the 2016 fiscal year, to build a cohort of one million American volunteers for genomics and other biomedical research. The US$215 million earmarked to gather medical records and genomic data will be used to create a databank. The resulting databank will contribute to advance knowledge of the underlying biological causes of diseases with an aim to develop “Precision Therapies” for these diseases. The US cohort will be assembled by linking existing cohort studies. Participants will be asked to give consent for extensive characterisation of biologic specimens and behavioural data, all linked to their electronic health records. According to Francis Collins, the Director of NIH, this endeavour will create a repository that is superior to a biobank.
This initiative aims to create a voluntary national research cohort and move towards more and better treatments for cancer, work towards better privacy protection, modernise regulatory processes and enhance public-private partnerships. The US Congress and Senate will have to ultimately approve the spending on the initiative, which will be part of the 2016 budget.