Here’s a story from the holidays that I missed on an issue I’ve blogged about: the unauthorized or unknowing use of newborn babies’ blood samples. The Times Online says that a Dublin, Ireland, hospital is being investigated by the Data Protection Commissioner over reports the hospital “has built a database containing the DNA of almost every person born in the country since 1984 without their knowledge in an apparent breach of data protection laws.” (Recently, the Associated Press reported, “Texas health authorities will destroy more than five million blood samples taken from babies without parental consent and stored indefinitely for scientific research.”)
The Sunday Times discovered it has a policy of indefinitely keeping blood samples taken to screen newborn babies for diseases.
Unknown to the DPC, the hospital has amassed 1,548,300 blood samples from “heel prick tests” on newborns which are sent to it for screening, creating, in effect, a secret national DNA database. The majority of hospitals act on implied or verbal consent and do not inform parents what happens to their child’s sample.
The blood samples are stored at room temperature on cards with information including the baby’s name, address, date of birth, hospital of birth and test result. The DPC said it was shocked at the discovery. […]
“Clearly it is a matter of significant concern to us that holding data of this nature containing sensitive health details of such a significant portion of the population appears to have operated without taking account of data protection requirements,” said Billy Hawkes, the DPC commissioner. […]
The hospital has collected almost 2.8m samples since 1966 and diagnosed 1,815 disorders. Samples collected prior to 1984 were destroyed after being contaminated by water damage.
A hospital spokeswoman said the blood samples were being stored to help develop the screening programme and was in accordance with practices in other countries.
The hospital had surveyed 23 screening centres in other European Union countries; 40% of them held records indefinitely and the median retention time was 10 years.
The DPC said the practice in other countries was not relevant.