Privacy and the 100,000 Genome Project

With the UK launch of 23andMe’s home DNA testing kit, the legalisation of mitochondrial DNA transfer, and the 100,000 Genome Project underway, optimism abounds about the science of genetics delivering on its early promise. But there is also cause for greater caution and oversight than some biotechnology enthusiasts would like to admit.

These developments are taking place with insufficient regard for their social and ethical implications. We can, however, be sure that the policies and regulatory frameworks currently being enacted will shape future decisions. A balance needs to be struck between the pro-R&D agenda that is driving a permissive regulatory regime, and sensitivity towards concerns about genetic technologies that public consultation, if properly conducted, can alert us to. It is in the public interest that there is wider discussion of the full implications of recent developments.

The 100,000 Genome Project is a case in point. The collection and sequencing of 100,000 individuals’ genetic information is intended to constitute the first phase of what will be a national genomic database. The ‘50 million Genome Project’ will include the genomes...