Driven by the ambition to put the UK at the forefront of biosciences, bioinformatics and health research, the last decade has seen the re-invention of the information governance regime. At present, personal medical data can be disclosed to commercial organisations for ‘purposes beyond our care’ and without our consent. Can we expect the same with genetic data?
Once the 100,000 genome project has been completed, it will be expanded upon and sooner rather than later, the whole-sequenced personal genomes of every person in England will be held on a national database and commercialised. As it is impossible guarantee the anonymity of whole-sequenced genomes, the commercialisation of the genome of every person in England is unchartered territory.
Through proper consultation with the public, EthicsandGenetics urges the Government to adopt a guiding framework that makes clear what genomic data can and cannot be used for.
A person’s genomic information is highly sensitive. A genome can reveal predispositions to diseases, such as diabetes and cancer, as well as to psychiatric conditions. It may also reveal dispositions to criminality or violence. In August 2012, EthicsandGenetics secured evidence confirming that the Government is to establish a national genomic storage facility. In the first instance, it will hold 100,000 whole-sequenced genomes. In time, the genome of every person in England will be sequenced and connected to care data.
In July 2013, EthicsandGenetics secured evidence confirming that the Government intends to commercialise the information held on the 100,000 whole-sequenced genomes. There is, at present, no legislation that prohibits genetic discrimination or other forms of discrimination arising from genetic characteristics, in the UK. We therefore urge the Government to adopt robust legislation which prohibits genetic discrimination, particularly in the workplace, and by insurers, as well as other forms of discrimination that arise from genetic characteristics.