15 Morningside Road, Edinburgh EH10 4DP, Tel: 0131 447 6394
27 January 2006
The Scottish Council on Human Bioethics (SCHB) indicated, today, that it was extremely concerned about new changes in the proposed Scottish legislation relating to organ transplantation.
The new provisions proposed in the Human Tissue (Scotland) Bill [1] are being considered by the Scottish Parliament on the 2nd of February 2006 during stage 3 of the legislative process.
The Human Tissue (Scotland) Bill is a hybrid between explicit consent (opt-in) and presumed consent (opt-out) systems for transplantation.
In other words, the proposed system in Scotland is of:
This is confirmed in the Scottish Executive Press Release of the 30th of November 2005 which indicated that a Consultant Surgeon and Clinical Director at Edinburgh Royal Infirmary Transplant Unit, John Forsyth said: "These changes will make the legislation similar to the way in which Spanish law is put into effect. I can only hope that we too will see a positive effect on the organ donor rate in Scotland." [2]
However, in contrast to all other systems of ‘soft’ presumed consent in Europe, the Scottish Bill does not enable persons, who wish to do so, to register their opposition to the removal of body parts after death.
In other words, a problem arises if a person does not know or cannot rely on his or her relatives, characterised in Section 45 of the Bill (and who may be just friends), concerning the decision to use his or her body parts after death. Indeed this person cannot stop his or her potentially unknown or unreliable relatives indicating that they have no "actual knowledge that the adult was unwilling for any part of the adult’s body … to be used for transplantation" after death in the present UK context (using the words of the Scottish Bill in Section 7, paragraphs 4 & 5). This is because the UK does not have a national register opposing general or specific organ donation.
This, unfortunately, has very serious ethical consequences and could lead to the undermining of the principle of informed consent in transplantation.
In this regard, Dr. MacKellar indicated that "organ donation should be encouraged but undermining medical ethics in order to increase the number of available organs will only serve to eventually reduce the donation rate in the long run."
The SCHB is already aware of a number of single persons who are considering taking their names off the NHS Organ Donor Register and obtaining legal advice if the provisions proposed in Section 6 are not amended by the Scottish Parliament. This is because they do not have any appropriate close relatives, as characterised in Section 45 of the Bill, on which they can really rely to implement their wishes after death.
The SCHB continues to share the concerns of Dr. Nanette Milne MSP, expressed on the 30th of November 2005 in the Scottish Parliament at stage 1 (Col 21241), whereby the Bill does not allow any provisions for people who either object to donation in general or to some of their specific organs. The absence of fail-safe mechanisms to allow people to record their wishes, be they positive or negative, is a cause for concern that the Bill should consider.
In this respect the SCHB would like to support the amendments suggested by Dr. Milne MSP for Stage 3 of the Bill (2 February 2006) which can be found at: http://www.scottish.parliament.uk/business/bills/42-humanTissue/index.htm.
For a review of different transplantation systems in Europe see: http://www.scottish.parliament.uk/business/research/briefings-05/SB05-82_000.pdf
The SCHB is also concerned that the assurances given by the Deputy Minister for Health and Community Care (Lewis Macdonald) in his presentation before the Scottish Parliament on the 30th of November 2005 that "The lesson of Alder Hey is that we should not presume consent and that we should encourage authorisation" (Col 21237 of the Official Report) may not be fulfilled.
This is because to go beyond the express and specific wishes of a person by letting others make important decisions on what they ‘assume’ or ‘presume’ are the wishes of this person is what specifically lead to the scandal at Alder Hey Children’s Hospital in Liverpool. At this hospital, body parts of children were retained after post-mortem examination when healthcare professionals ‘presumed’ that this would be acceptable to parents without consultation.
Dr. MacKellar stated, in the light of this, that "the present draft Human Tissue (Scotland) Bill may result in the removal of organs from deceased persons which is as unacceptable as that which took place in Alder Hey Children’s Hospital in Liverpool" adding "if this Bill is enacted as it stands, it would unfortunately undermine public confidence in the organ transplantation system."
Moreover, the SCHB is concerned that the minister is misguiding the Scottish public when he indicated that: "We have learned from the public reaction to recent organ retention issues that for many people presumed consent does not count as a valid form of consent” adding "That is why the Bill will seek to modernise the legal framework by strengthening the existing system, based on giving effect to people's wishes. We firmly believe that building upon the current 'opt-in' system is the right way forward for Scotland." [3]
In this regard, Dr. MacKellar indicated that "what is being proposed is not an ‘opt-in’ system as suggested by the Deputy Minister for Health but a hybrid between explicit consent (opt-in) and presumed consent (opt-out) systems for transplantation."
1. Human Tissue (Scotland) Bill, http://www.scottish.parliament.uk/business/bills/billsInProgress/humantissue.htm
2. 20 November 2005, http://www.scotland.gov.uk/News/Releases/2005/11/30110629
3. 20 November 2005, http://www.scotland.gov.uk/News/Releases/2005/11/30110629