November 8, 2019 - 8:24am
Matt Hancock wants to sequence your baby’s DNA, the Daily Telegraph reports.
Speaking at a conference by Genomics England, he stated that all babies should be offered full genome sequencing along with the heel prick test as a way of ushering in a ‘healthcare revolution’ in which every individual takes advantage of gene sequencing for tailor-made assessment of health risks and personalised drug treatment.
Hancock has been a keen backer of the 100,000 Genomes Project, launched by David Cameron in 2012 in memory of his son Ivan and which reached its target to sequence 100,000 UK genomes in December 2018 in an effort to improve understanding of rare diseases.
He is clearly enthusiastic about the potential for genomics to deliver individual healthcare benefits. But it does not take much imagination to see the further potential for a database containing the full genetic sequence of the majority of UK children to open a Pandora’s Box of unintended consequences from the intrusive to the frankly alarming.
At the least disturbing end, consider the NHS’ record on data security: see here, here or here for recent examples.
Such a database would also come under considerable pressure from those keen to realise value for a cash-strapped NHS by making it available for data mining by private companies. Existing NHS health data is already under such pressure.
Consider further the potential for such a database to be abused. In China, the regime is already collecting DNA samples from the entire Uighur Muslim population of Xinjiang for surveillance purposes, and according to some reports uses this information in support of forced organ harvesting from political prisoners.
While of course I am not suggesting Matt Hancock has anything like this in mind, his focus on the benefits for individual healthcare elides the true value of large-scale gene sequencing. We live in the era of big data. Before we all sign our babies up for gene sequencing, it might be prudent as a nation to consider what someone with less benign motivations than Matt Hancock might do with that aggregated information once it exists.
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