15 Morningside Road, Edinburgh EH10 4DP, Tel: 0131 447 6394
10 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 Health Committee of the Scottish Parliament on the 17th of January 2005 during stage 2 of the legislative process.
The SCHB is concerned that in Section 7 of this Bill, a ‘nearest relative’ will be able to authorise the removal of body parts from a deceased person for research, education, training or transplantation even though this person may have left no expression of wishes to do so [2].
In this respect, Dr. Calum MacKellar, Director of Research of the SCHB, indicated that "it would not be right for a ‘nearest relative’, which could mean an unknown relative or just a friend of long-standing, to authorise the use of body parts of a deceased person who has left no wishes" [3] adding that "this is because there is no certainty that the decision of a ‘nearest relative’ is a true reflection of the wishes of the person at the time of his or her death."
In addition the SCHB is 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."
The SCHB is indeed aware of a number of single persons who are already considering taking their names off the NHS Organ Donor Register and obtaining legal advice if the provisions proposed in Section 7 are not amended by the Scottish Parliament.
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." [4]
But the proposed Scottish Bill is actually only a hybrid between explicit consent (opt-in) and presumed consent (opt-out). Moreover, the general public in Scotland is not being told that the presumed consent system is entering ‘by the back door’ into the proposed legislation.
Indeed the proposed Bill would enable:
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." [5]
Furthermore, the SCHB is concerned that proposed Bill seems to have been drafted with the aim of increasing the supply of organs for transplantation, or of human material for education, training, research or audit at the expense of one of the most important ethical principles in medicine, namely the principle of ‘informed consent’. This is confirmed in the Health Committee Official Report of the 20th of December 2005 [6] when the minister, Mr. Lewis Macdonald MSP indicated to Dr. Nanette Milne MSP that "The effect - although not the intent - of the amendments {from Dr. Milne MSP supporting informed consent and opt-in system] could be significantly to reduce organ donation authorisations by relatives."
A problem also arises with the Bill if a person does not trust his or her relatives 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 making the decision to use his or her body parts after death in the present UK context which does not have a national register opposing organ donation or the removal of specific body parts.
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."
1. Human Tissue (Scotland) Bill, http://www.scottish.parliament.uk/business/bills/billsInProgress/humantissue.htm
2. Policy Memorandum, paragraph 12., http://www.scottish.parliament.uk/business/bills/pdfs/b42s2-introd-pm.pdf
3. Section 7(5) provides that ‘unwillingness’ should not be implied simply by the fact that the adult had not provided authorisation as respects the particular purpose, use or part. Human Tissue (Scotland) Bill – Explanatory Notes: http://www.scottish.parliament.uk/business/bills/pdfs/b42s2-introd-en.pdf
4. 20 November 2005, http://www.scotland.gov.uk/News/Releases/2005/11/30110629
5. 20 November 2005, http://www.scotland.gov.uk/News/Releases/2005/11/30110629
6. Col 2445, http://www.scottish.parliament.uk/business/committees/health/or-05/he05-3202.htm#Col2431