Hospital keeps secret DNA file

[Eugen Leitl]

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
bheel 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.

bClearly 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.

bThe 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.