December 2009 - cypherpunks-legacy

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by Jillian Hagen 28 Dec '09

28 Dec '09

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Hospital keeps secret DNA file
by Eugen Leitl 28 Dec '09

28 Dec '09

http://www.timesonline.co.uk/tol/news/world/ireland/article6968561.ece December 27, 2009 Hospital keeps secret DNA file Childrenbs University hospital in Temple Street is under investigation by the Data Protection Commissioner Generic photographs in a surgical ward of a Hospital Mark Tighe A DUBLIN 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. The Childrenbs University hospital in Temple Street is under investigation by the Data Protection Commissioner (DPC) since 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 b heel prick testsb 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 childbs sample. The blood samples are stored at room temperature on cards with information including the babybs name, address, date of birth, hospital of birth and test result. The DPC said it was shocked at the discovery. On four occasions the hospital has allowed scientists from a university and other hospitals to access the Newborn Screening Cards (NSCs) for research purposes. This was done on the basis of anonymity but without the consent of parents and followed approval by the hospitalbs ethics committee. The DPC is now engaged in urgent discussions with the hospital, the Health Service Executive (HSE) and the Department of Health to force the hospital to comply with data protection legislation by January. The DPC could order the destruction of the records if it is not satisfied the hospital is taking the necessary actions. b 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,b said Billy Hawkes, the DPC commissioner. b The issue of the justification for the holding of the blood samples for any period beyond that which is necessary to perform the initial blood test will have to be considered as part of this officebs investigation of this matter. At present the position would appear to be that there is no consent from parents for the information to be held at all.b 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. A mother who raised the issue with The Sunday Times has made an official complaint to the DPC. She said her main concern was the lack of informed consent requested from parents. The retention of newborn screening cards has caused controversy in Australia and New Zealand where the DNA has been used by police to help to solve crimes. A sample in New Zealand was used to identify the father of a dead child against the wishes of the mother. Dermot Ahern, the justice minister, is expected to publish legislation to regulate a national criminal DNA database early in the new year. The bill is expected to provide for the destruction of DNA profiles from suspects who are not charged after three years.

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