1 August 2013
The Financial Times has warned that recent high-profile cases of military intelligence leaks could hinder the current genomic revolution.
The article asserts that the recent cyber-surveillance scandals (e.g. involving release of classified information by Bradley Manning and Edward Snowden) are making the public more concerned about data protection and privacy, with potential knock-on effects for the gathering and study of large-scale genomic data and linked clinical information. Besides the considerable technical barriers to storing, linking, comparing and analysing these big data, there is said to be a ‘policy quagmire’ of growing proportions due to public (and hence political) concerns. This is in addition to financial constraints on the development of genomic medicine associated with the economic climate.
Meanwhile in the UK, Genomics England is to develop plans for large-scale genome sequencing and medical records linkage for National Health Service (NHS) patients; others have proposed that non-profit entities should oversee genomic databases to ensure public trust, although all profit from Genomics England is to be reinvested in the NHS. But can profits ensue without commercial involvement, which is the issue that many people worry about?
Professor Eric Lander, Director of MIT’s Broad Institute, is reported to have proposed an approach whereby individuals opt-in to involvement in genomic research in a similar way to signing up as organ donors. Since in the UK there is a move towards presumed consent for organ donation (with opting out available on request), the same model might be used for participation in genomic research. After all, the UK NHS is publicly-funded, free at the point of care – and facing a potential financial crisis in coming years due to the rising burden of an ageing population on the health service, as well as other major public health issues such as the obesity epidemic. It is arguable that that those who enjoy the benefits of freely available healthcare ought to make contributions to the public good in the form of participation in medical research. And not all valuable medical research is publicly funded; pharmaceutical and biotech companies play a vital role in developing new therapeutics and diagnostics.
For the UK, some commercialisation of research databases may prove essential for the sustainability of personalised medicine within a highly developed health service, but public concerns will have to be addressed and reasonable faith established in those who oversee both databases and their scientific exploitation. It is, however, important not to equate valid public concerns about privacy and the ethical use of medical data (see previous news) – which merit discussion, consideration, and appropriate safeguards - with the views of conspiracy theorist led pressure groups who believe genomic databases are out to harm us all.