“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”.
What has happened is that the hospital:
“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 hospital is now under investigation by the Data Protection Commissioner who will possibly order that all these record will have to be destroyed if it is not satisfied that the hospital is taken all necessary actions.
“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 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 office’s 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.”
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.
I have several serious issues with this DNA database and have voiced my concerns in a number of online forums. I have also contacted the DPC for advice. I was advised to contact the CEO of Temple Street hospital by email to determine if my children’s records were held in this database and if so to request that they be destroyed. I have done so but have not received a reply so far.
Now while I can understand the retention of the samples for the development of a screening programme, I do not see why the private details of each baby had to be retained. Surely statistical data (DOB, ethnic background, geographical location etc.) should be sufficient? I also have questions in how secure this data is stored and who has (and has had) access to it. As the database is defacto illegal I do not see it complying in either of these areas.
A “funny” thing happened though when I made a comment about this on Twitter. My tweets are posted to my profile on IGO. Within hours my comment was being criticised by someone who seemed to have an insider knowledge of hospital procedures. This person failed to grasp the essence of my objections and insinuated that by my objections I was showing a disregard to the welfare of sick children who could be helped by a database like this. What was interesting though was that this person set up an IGO & Twitter account only shortly after I posted my comments and only used these accounts to criticise my statements. Both accounts also gave no real indication as to who the person was. When I asked them to disclose who they are they preferred to go silent. I have my suspicion but will leave it to you the reader to draw your own conclusions.
Something else emerged from the discussions with this and other person though; apparently the retention of blood (and DNA) samples past the necessary period is allegedly commonplace in other hospitals and labs across the country. Also the procedure apparently calls for the HSE to order the hospital to destroy said samples before they are allowed to do so. Even though these rules are no excuse and do not supercede the applicable legislation it does indicate that at some level within the HSE there must be an awareness of the existence of these databases.
This issue is far from over for me and I will be posting regular updates to my blog. Keep reading!