The director of GeneWatch UK, a non-profit group which investigates how genetic technologies will impact our society, has warned that the secretary of state for health wants to introduce a national DNA and genetic ‘all-in-one’ database, eventually collecting the details of every British citizen without consent.
Speaking at the MedConfidential event in London, Dr Helen Wallace said that plans suggested by Human Genomics Strategy Group (HGSG) would make it impossible to keep data anonymous. The genetic information can be used to identify individual patients, their disorders and their relatives.
The move also undermines article 8 of the European Convention on Human Rights, the right to privacy.
It would be possible to swab DNA from a coffee cup and compare this to your sequence, also linked to your medical record, stored in a research database. The HGSG plan threatens to remove people’s right to know exactly who is using their genomic data and why – as required by the Helsinki Declaration – and the building of a biometric database without consent, which will allow for tracking and categorisation of all individuals and those individual’s relatives. This data is mostly not relevant to patient care, and could lead to stopping screening criteria in favour of individual feedback of personalised risk predictions. And marketing.
This will lead to investors cashing in and intermediaries, such as Google, building risk algorithms for profit and personalised marketing – indeed, Google‘s Sergey Brin is involved in the gene testing company 23andMe.
Recent figures show that only 7% of people who were approached to opt-into the UK Bio-bank agreed.
“Should the 93 percent be presumed to have given their consent unless they actively refuse? Although the public is largely supportive of research, they want their total consent – and by-stepping this could damage public trust in legitimate medical research.”