More than 10,000 babies in Leicestershire had their DNA stored on an NHS database last year without the proper consent of their parents, it has been claimed.As the newspaper goes on to say, this looks very like the creation of a national DNA database via the back door.
Blood samples are taken from newborn infants around the country in routine heel prick tests to screen for serious health problems.
But it has emerged they are banked in databases for years by hospitals, and could be accessed by police looking to identify criminal suspects.
The defence of the University Hospitals of Leicester NHS Trust, as quoted by the Mercury, is that mothers were give a leaflet about the procedure.
But as Dr Helen Wallace from GeneWatch says:
"Giving mothers a leaflet does not amount to informed consent. No one who has just given birth is in a state to understand the full implications of how their baby's genome might be used in future."
This is very interesting. I've just been translating a text about the ethics of biobanks (from German - there is a German Ethics Council). Even informed consent ought to exclude the use of biobanks for criminal investigation. When the Swedish politician Anna Lindh was murdered, a Swedish national biobank was used to trace the murderer. The ECHR doesn't cover this kind of thing et.
ReplyDeleteFlippin' eck. This seems like it might be worth asking Jo Shaw and Liberty what people can do if their baby's DNA has been registered and how to get the records destroyed?
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