Dr Helen Wallace, director of GeneWatch UK, warned at a MedConfidential event in London that, beyond electronically storing patient records, the next step for the UK is linking these records with DNA and genetic information on an all-in-one database.
It is already public policy, she pointed out, and a Human Genomics Strategy Group (HGSG) urged the need for a national DNA database for personalised medicine last year. This was welcomed by the secretary of state for health, which has asked for the recommendations to be implemented.
Genetic data is massively revealing. It can be used to identify relatives as well as the patient, and can be used to assess the potential for passing recessive genetic disorders on to children.
Anonymisation here, Wallace argued, is impossible. For example, 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, Wallace said, as well as marketing.
Ultimately, this means the entire population could unwittingly become a profit-making market for genome sequencing without presenting direct benefits to the people whose DNA is being collected, including babies and children, sequenced without their consent. 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.
Chiefly leading the charge are Sir Mark Walport, former head of the Wellcome Trust, professor Sir John Bell of Wellcome/Oxford and HGSG, Sir Richard Sykes, former chair of GlaxoSmithKline, and Sir Paul Nurse, head of the Francis Crick institute and the Royal Society.
Supporters of ‘Public Health Genomics’, Wallace argued, said that they think data mining and storing genomes is necessary for the public health – but this itself undermines article 8 of the European Convention on Human Rights, the right to privacy. It is also disputed just how effective genetic variants are as predictors of common diseases.
This is all despite there never having been a public consultation on the plan, or an assessment of costs and benefits – while there is significant commercial interest in further opening up healthcare to the markets, or insurers. Others set to profit would be hardware, software, and infrastructure providers such as Microsoft and IBM, genotyping companies like Life Technologies, VC investors, and universities who can gain research and development tax credits and matched infrastructure funding.
Further implications, according to Wallace, include a shifting away from public health controls on products or health inequalities in favour of personalised marketing. It also threatens a de-skilling in the NHS, opening up the floodgates to commercial control over diagnosis and prognosis. Personalised risk assessments themselves will be used to tout products and other medications.
Just seven percent of people who were approached to opt in to the UK Biobank agreed. Wallace asks: 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.
With the above considered, Wallace says that data sharing plans for electronic medical records are a step towards sharing genomes and genotypes – and ultimately building a DNA database of the whole population “by stealth” in the NHS.