To:  Welsh Government Health and Social Care Committee

Re:    Consultation on the Human Transplantation (Wales) Bill

Sirs,

I am writing as an interested individual in response to the proposed legislation on presumed consent for organ donation.

Firstly let me confirm I wholly support organ donation and am aware of the tremendous good this does for individuals who benefit from transplanted organs.  However I am deeply troubled by the proposal In Wales for presumed consent.  I am not clear why such a term should be used because in reality "presumed consent" is a misnomer - it is not consent

Secondly I am concerned about the potential problems that could transpire between doctors, patients and their families due to potential conflicts.  I appreciate there is a need to increase the number of organs available but presumed consent is not the right way.  Perhaps better publicity should be considered to encourage more individuals to sign up to being donors.  The important thing to me is that organ donation should remain the freewill choice of individuals and not the state. Patients and their families should be able to trust doctors but there is a danger with the proposed legislation that this trust, which underpins healthcare in the UK, could be broken.  The Welsh Government is on dangerous ground here and my fear is that a precedent is set for the rest of the UK to follow.  I am aware of the fact that some presumed consent legislation nations have low organ availability rates, so the legislation may not be the "success" it is expected to be and may not deliver the desired outcome.  Has sufficient research been done on this?

Thirdly, given that the Welsh Government has now committed itself to this legislation, I would ask that assurance should be included in the drafting such that if the surviving family objected, organs would not be taken. This would demonstrate respect for the views of the surviving family and I understand other countries with similar legislation include such assurance.

I trust you will be able to take these points into account as part of your consultation.

Yours faithfully,

Philip Barnett
Crawley