News

The US National Institutes of Health (NIH) has announced a new policy for the sharing of data derived from genome-wide association (GWA) studies. Starting in January 2008, all researchers who receive NIH funding to conduct GWAs will have to submit their data to a central database.

These large-scale studies are used to identify associations between particular genetic variations and the presence of a phenotype or disease. NIH considers that sharing the information from many studies in one central repository is likely to increase the potential for developing new approaches to the prevention and treatment of disease, as well as maximising public investment. As stated, ‘the goal of the policy is to advance science for the benefit of the public’.

Plans for the database have been developed taking into account the views of both patients and researchers, who raised issues about whether it might be possible to use the data collected for non-research purposes. The effects on researchers’ ability to publish and derive patents from the data were also a concern.

In light of this the database deliberately does not include information that could be used to identify individuals. Investigators are also encouraged to obtain special confidentiality agreements to prevent any information being used for non-scientific research (such as law enforcement, and by employers and insurance companies). In addition, scientists have exclusive publication rights for 12 months on the data they gather, and are encouraged to develop commercial applications such as diagnostic tests and therapeutics.

The policy has been formulated in line with current standards in scientific and ethical issues, but NIH expects to revise the policy as these areas develop further.