« Previous | Contents | Next »
Listen
LEGISLATION RELATING TO ORGAN AND TISSUE DONATION AND TRANSPLANTATION: ANALYSIS OF CONSULTATION RESPONSES
EXECUTIVE SUMMARY
A Scottish Executive Health Department consultation on the Legislation Relating to Organ and Tissue Donation and Transplantation took place between 18 March 2004 and 11 June 2004. A consultation paper was issued to which 62 responses were received from a wide range of people and organisations in the public, private and voluntary sectors.
The consultation concerned new legislation aimed at addressing the country's severe shortage of organs for transplantation. It included consideration of ways to help patients needing transplants and ways of improving safeguards for donors. The existing legislation is contained in the Human Tissue Act 1961 and the Human Organ Transplants Act 1989.
The proposals take account of parallel consideration in the rest of the UK of the law relating to organ and tissue donation and transplantation in order to ensure broad consistency of approach. The Human Tissue Bill contains details of the legislation proposed for the rest of the UK. The exercise also followed consultations in Scotland dealing with legislation on hospital post-mortem examinations and the Anatomy Act 1984 respectively.
The consultation addresses retrieval of organs and tissues from people who are still alive as well as from people who have died. Indeed, the shortage of organs in the UK has led to a growing emphasis on donation from the living, particularly kidneys. Where the potential adult donor has died, the proposals for legislation are aimed at respecting their wishes. Under the new legislation, no one under the age of 16 would be allowed to authorise the donation of their own organs.
This report presents an analysis of the responses to the written consultation on the legislation relating to organ and tissue donation and transplantation. The findings will inform the preparation of advice to Ministers on the comments received on the proposal to replace in Scotland the Human Tissue Act 1961.
Although a relatively modest volume of responses were received, they represented a wide range of different consultee sectors.
The consultation document was structured into 3 main sections: transplantation of organs and tissue from people who have died; transplantation of organs and tissue from the living; and tissue banking. Views were invited on issues highlighted in the first two of these sections.
SUMMARY OF VIEWS EXPRESSED
Transplantation of Organs and Tissue from People who have Died (
Chapter 4)
Of those who commented there was unanimous support for a revision of the current legislation in respect of organ and tissue transplantation
The concept of "authorisation" was supported by all who commented
84% of those who provided a view did not see a role for a nominated person if someone has decided to carry an organ donor card or has added their name to the NHS Organ Donor Register
Balancing Views on Organ Retrieval (
Chapter 5)
The majority view (72%) was that in respect of deceased children, where both parents cannot agree on whether retrieval should go ahead, it should not proceed
A recurring comment was that if the hospital has been dealing with only one parent, then it should not be obliged to seek the other parent's views on organ retrieval
88% of those who commented considered that no further proof of wishes should be required if adults and mature children are carrying a donor card or have registered their name on the NHS Organ Donor Register
Many suggestions were made for witnessing verbally expressed wishes with no single overarching preference emerging
All but one commentator agreed that in cases where there are no next-of-kin, organ and tissue retrieval should take place on the basis of a donor card or name on the NHS Organ Donor Register
Where there are no next-of-kin and no expression of wishes by the deceased, respondents were almost evenly split between those who considered a continued role for a "person lawfully in possession of the body" (48%) and those who considered that organ retrieval should simply not proceed (52%)
Where the wishes of the deceased and the surviving relatives are in opposition, 75% of respondents who commented thought that the deceased's wishes should prevail
Many respondents acknowledged that even though the deceased's wishes may take precedence in theory, in practice retrieval would not usually be carried out in the face of strong opposition from relatives
Views were almost evenly split on whether there should be a separate register for objectors with 52% of those who commented in favour and 48% against
A common reason for favouring a separate register for objectors was that such a record would likely reduce any chance of donation being made against the deceased's wishes
However, many respondents considered that there was no need for such a register, and that it would be too costly and complex to operate
A slight majority of those who commented (55%) favoured the inclusion of "friend of longstanding" in the hierarchy of relatives
Where a duration of such friendship was suggested, most respondents opted for 5 years or 10 years
However, many respondents considered "friend of longstanding" too difficult to define with its inclusion likely to cause confusion and to be open to challenge
Other Issues Relating to Organ and Tissue Retrieval from People who have Died (
Chapter 6)
Almost three-quarters (71%) of those who commented were opposed to the application of penalties in the context of cadaveric organ and tissue retrieval
A recurring theme was that there are already adequate systems in place to ensure appropriate standards of practice are upheld
Consistency with the rest of the UK was a common reason for favouring penalties
Around two-thirds (63%) of those who commented recommended that some or all of the functions of the Human Tissue Authority should be extended to Scotland
Again, consistency with the rest of the UK was a dominating reason for extension of functions of the Human Tissue Authority to Scotland
The majority view (64%) was for changing the previous legislative provision so that rather than repeating brain stem death tests, the doctors removing organs should have to satisfy themselves that the tests had been performed satisfactorily
A common view was that requiring doctors to undertake brain stem death tests and retrieval functions would place them in a position of conflicting interests
A large majority (80%) of those who commented favoured the new legislation permitting the retrieval of
organs under the supervision of a registered medical practitioner
Two main reasons for supporting this proposition were to maintain consistency with the rest of the UK and to maximise every opportunity to use available organs
The vast majority (94%) of those who commented favoured the new legislation permitting the retrieval of
tissues under the supervision of a registered medical practitioner
Almost all (96%) of those who provided a view supported the proposal that the new legislation should include a provision to put beyond doubt the legality of taking the minimum action necessary to preserve a body so that consultation on transplantation can take place
80% of those who commented favoured the proposal for new legislation in Scotland to make provision for "required request"
The introduction of "required request" was seen by many as likely to increase the rate of donation and encourage NHS positive attitudes towards donation
However, some held the view that a "blanket approach" may not always be appropriate and good medical practice and judgement on a case by case basis should prevail instead
Transplantation of Organs and Tissue from the Living (
Chapter 7)
All but one of those who responded (98%) were in favour of extending the scrutiny of live transplants to cover cases where the donor and recipient are genetically related
The most common reasons cited in favour of such an extension were consistency with the rest of the UK and that it would ensure that donations had been made free from pressure and coercion
A slight majority (58%) of the relatively few who commented considered that extending scrutiny of live transplants in these cases would remove the need for genetic blood testing to prove the relationship
Most of the few respondents who commented considered that although in theory it would be possible not to make such a change in Scotland if it was being implemented in the rest of the UK, this would not be sensible
Most of the respondents who commented (86%) favoured extending the role of the inspectorate for the rest of the UK to Scotland
76% of those who provided a view supported both paired and altruistic live donation in Scotland with a further 9% of respondents favouring paired donation only
Many supported altruistic live donation only under certain conditions such as following extensive counselling or according to strict criteria, to prevent any misuse of the provision
« Previous | Contents | Next »