Plan to destroy heelprick cards is a serious mistake
The Guthrie test archive is a precious resource that cannot be replaced
A complaint was made to the Data Protection Commissioner by a member of the public in 2009 that their Guthrie card was being held by the HSE without their consent. The advice from the commissioner to the HSE was that continued retention of the cards constitutes a breach of data protection legislation. Following an internal review the decision was taken by the minister for health to destroy the archive, while allowing individual card holders to request to have their cards returned. It is the opinion of a large proportion of the medical community, both in Ireland and internationally, that disposing of these cards is a serious mistake and that the decision to do so has been based on a very narrow and legalistic perspective that does not take the medical and societal value of the cards into account. In the past 15 years, there has been an explosion of knowledge in the area of genetics, which would have been unimaginable to previous generations of medical and scientific experts. It is certain that the value of the genetic material in this archive cannot yet be fully quantified, and destroying it would be short-sighted in the extreme.
The decision to destroy the cards has been made without any meaningful consultation with medical and scientific experts who see the need to have cards preserved. The public has been largely unaware of the importance of the archive or its planned destruction and has not had the opportunity to enter the debate.
The view of the HSE is that cards cannot be retained without consent. However, alternatives to consent do exist, even within the existing legislation. Furthermore, in the past there has been political will to introduce exceptions to the Data Protection Acts, such as that made for the establishment of a National Cancer Screening Registry in 1997.
Data Protection Acts allow for health data to be processed without consent under certain circumstances: where “it is necessary to prevent injury or damage to the health of the data subject or another person” or “to protect the vital interests of the data subject or another person in a case where (I) consent to the processing cannot be given by or on behalf of the data subject or (II) the data controller cannot reasonably be expected to obtain such consent.”
The safeguarding of privacy is a matter of extreme importance, but there is nothing of more vital interest to an individual or to society than the saving of life. The Minister should take this into account and if necessary introduce new legislation rather than destroy this irreplaceable archive forever.
ProfJohn Crowe is p resident of the Royal College of Physicians of Ireland