Every individual’s DNA is unique and can be potentially used as an identifier; thus measures need to be taken to ensure the privacy of the data collected from genetic studies. However, firewalls that are necessary for the security and confidentiality of patient data can impede access and sharing of data by researchers. Data Enclaves where information is not collected, banked or shared, but allow investigators to work with specific datasets who have filed a research protocol regarding what can be printed, saved and removed from the site is one method of sharing datasets while protecting the identity of participants. The transfer of large files is another frequent problem but can be addressed by high speed links to nearby supercomputers and cloud computing systems. Availability of cheap and effective Laboratory Information Management Systems (LIMS) would also accelerate progress.
