Human Tissue Bill

Part of the debate – in the House of Lords at 2:30 pm on 25 October 2004.

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Photo of Baroness Finlay of Llandaff Baroness Finlay of Llandaff Crossbench 2:30, 25 October 2004

My Lords, determining care for those who lack capacity is fraught with difficulties, yet it faces clinicians daily. In determining best care we must carry out research—that is research into the most delicate, the most fragile frontiers of human existence, such as when someone has had a cardiac arrest or is on a ventilator, precariously balanced between life and death. Without research into conditions that destroy the very essence of a person, such as Parkinson's disease or Alzheimer's disease, nothing will ever improve. That is why we cannot duck the issue. We cannot hope that archived specimens will give us all the answers and we cannot rely on the "ask or anonymise" principle alone.

Without this amendment research ethics committees will be too cautious to allow such vital research to proceed and it will be extremely difficult to define exactly how to deal with consent in a reasonable way. The amendment recognises that one must make inquiries but also that there must be limits on what can be done. It recognises the situation-specific nature of such inquiries.

At a cardiac arrest there are only seconds in which to ask those around whether they know anything about the patient and the patient's wishes, whereas for a patient with Alzheimer's disease, such inquiries can be carried out over days and in greater depth. The amendment tries to clarify the need for being situation specific rather than just inappropriately punitive. There will be a really deleterious rebound if there is no recognition of situation specificity when people lack capacity.