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Posted on 5th December 2021
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This article on Wired reports on the UK government's new programme to sequence the genome of babies. Initially this would be a trial programme involving just 100,000 to 200,000 babies, but would eventually be extended to include all babies born in the UK. This plan has been in the offing since an announcement in 2019 by Matt Hancock, who was at the time the UK health secretary.
The stated purpose of this genetic sequencing (identifying and treating genetic diseases) is very laudable, but experts have pointed out that such a programme could lead to a whole host of ethical concerns. Nevertheless the government is pressing ahead without discussing these. It makes me suspect that there is some other agenda behind this scheme.
The babies’ genomes will be anonymised and then added to the UK’s National Genomic Research Library, where the data can be mined by researchers and commercial health companies. That all sounds right and fine until one remembers that the UK government has previously had accidental releases of non-anonymised versions of personal health data; clearly governments can't be trusted to keep our private data secure.
Personally, I am very concerned about personal health data being mined by commercial health companies. There have already been cases where the genomes of individuals have been patented by health companies, so I am pretty certain that is what will happen with some of these babies' genomes. People are living organisms, and have a tendency to breed. Does that mean that, if my DNA has been patented by someone, I need to pay for a licence to have children, and that, if I have donated to a sperm bank, people would have to pay for a licence to use my sperm? These scenarios are not such a far stretch of the imagination, given that Monsanto (now owned by Bayer) has sued farmers found to have naturally and accidentally propagated offspring of Monsanto's patented crop lines on their land.
My personal view is that my DNA is my intellectual property, which can't be owned by someone else unless I sell it, and the legality of such a sale is itself questionable bearing in mind the rights that my living ancestors and offspring also have to parts of my DNA. Sadly, I don't expect my rights to my own DNA will be upheld by the courts, although that it yet to be fully legally tested.