Sir, – As a former member of both the Irish Council of Bioethics and the Health Research Board (HRB) Expert Group on Biobanking, I am appalled by the decision of the HSE to destroy a significant national resource, thus depriving both Irish scientists and patients of a resource that has the potential to help fight many diseases with a genetic component.
The decision is being made from a data protection perspective, as informed consent was not obtained for future studies at the time when these samples were originally taken (when future research possibilities could not have been envisaged). As a co-author of the Irish Council for Bioethics Report Human Biological Material; Recommendations for Collection, Use and storage in research (2005) and co-author of the HRB expert group report Recommendations for the establishment of a national cancer biobank I would like to ask the HSE to reconsider its position on this issue.
The Irish Council for Bioethics would have been an excellent forum to have reasonable discussion and consideration on this issue and provide intelligent advice to the HSE, but it was dissolved a number of years ago. As an aside it would also have been qualified to give a more measured opinion on the horse meat saga.
As a geneticist , I am aware of the importance of ethical principles including consent, but we need a more measured and sensible approach to address the current problem.
This would include an open dialogue with research funding agencies, proper consultation with relevant health and research professionals, disease foundations and patient advocates and most importantly, presentation to the public of the full facts, including both the risks and the benefits.
Providing a proper legal and ethical framework (which is what other countries have done when faced with this dilemma) where these samples can be preserved, but where only research of the highest ethical standards can be considered, should be the goal of the HSE, not simply destroying a resource that could potentially help future generations. Can we not pause for reflection and proper consultation? – Yours,etc,