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LEGISLATION RELATING TO ORGAN AND TISSUE DONATION AND TRANSPLANTATION: ANALYSIS OF CONSULTATION RESPONSES
CHAPTER 4: TRANSPLANTATION OF ORGANS AND TISSUE FROM PEOPLE WHO HAVE DIED
The specific issues raised in the consultation paper are looked at in turn below.
4.1 REPEALING THE 1961 HUMAN TISSUE ACT
The consultation stated:
The law governing the retrieval of organs and tissue from those who have died is the Human Tissue Act 1961, which also makes provision for hospital post-mortem examinations.
The Scottish Transplant Group's
Organ Donation Strategy for Scotland was published in July 2002 on a consultative basis. It contained a discussion of the Human Tissue Act 1961 and made a number of recommendations. One of these was that the Human Tissue Act 1961 should be replaced by separate legislation governing organ retention and organ donation/transplantation.
As the Scottish Transplant Group pointed out, there are a number of reasons for wanting to look at the provisions of the 1961 Act in the context of cadaveric organ donation. In brief these are:
Having a single piece of legislation governing organ donation and hospital post-mortem examinations has been a source of confusion in the public mind
The role of the "person lawfully in possession of the body" is unclear
Because of the difficulties in interpreting the 1961 Act in the transplantation context, hospitals have had problems with the role of the surviving spouse and relatives
The 1961 Act fails to acknowledge the reality of many contemporary relationships which may, for example, not involve marriage or may be of the same sex
The consultation asked:
IN THE LIGHT OF THE LEGISLATION BEING PROPOSED FOR THE REST OF THE UK, AND IN SCOTLAND IN RESPECT OF HOSPITAL POST-MORTEM EXAMINATIONS, DO YOU AGREE THERE SHOULD BE NEW LEGISLATION IN SCOTLAND IN RESPECT OF ORGAN AND TISSUE TRANSPLANTATION?
Almost all responses (58) provided a view. Amongst these there was unanimous support for a revision of the current legislation in respect of organ and tissue transplantation. One typical comment was that new legislation would be "
timely, necessary and welcome" (19 Educ).
Just under half of those who responded provided a brief rationale to support their view. Most commonly cited arguments in favour of introducing new legislation focused on:
Need to clarify/simplify the existing law
Need to harmonise/be consistent with law in rest of UK
Need to bring the law in line with current attitudes and modern day issues
In addition, a few respondents saw the need for the legislation to be brought up-to-date with the progress which they considered had been made in relevant research and technology (6 Indiv, 33 Pub Rep, 43 Prof Rep); others argued that revised legislation could serve to restore public confidence in organ and tissue donation and transplantation (34 Pub Rep, 47 Educ, 60 Indiv); a further rationale was that new legislation could incorporate safeguards for healthcare professionals not currently provided in the 1961 Act (28 NHS/Med, 31 NHS/Med, 43 Prof Rep).
4.2 ISSUES OF "AUTHORISATION"
The consultation stated:
The Executive believes that the new legislation for Scotland should be firmly based on respecting the autonomy of deceased individuals, provided they had the capacity to make their wishes known. This is in line with the Scottish Transplant Group's recommendations aimed at strengthening the current system of opting in, which is also the basis of the legislation proposed for the rest of the UK.
The considerations here are the same as those relating to hospital post-mortem examinations. The Executive therefore believes that the concept of "authorisation" is as valid in the organ donation context as it is in the context of the hospital post-mortem examination. The process of "authorisation" suggests an active decision by someone in a recognised position of power.
The consultation asked:
SHOULD THE SYSTEM OF ORGAN AND TISSUE DONATION IN SCOTLAND REST ON THE CONCEPT OF "AUTHORISATION?
Fifty four respondents provided a view on "authorisation" with all supporting the concept, albeit to varying degrees. Whereas one respondent had "
come round to" what they perceived to be the benefits of "authorisation" (7 Indiv), others provided stronger support for what they saw to be its consistency with notions of individual choice and autonomy (14 Pub Rep, 15 Pub Rep, 26 Acad). One respondent emphasised how the term appeared to imply a more "
active decision" rather than a "
passive consent" (39 NHS/Med).
Interestingly, two respondents separated the concept underlying authorisation with the actual word itself and expressed their support for the former but not the latter (25 Educ, 46 Indiv). One view was that the word "
smacks of authority" and devalues the "
preciousgift" aspect of donation (46 Indiv).
Another concern was that the concept of authorisation may not have been, "
sufficiently well communicated and debated in legal, professional and public arenas" (2 Prof Rep), with the perception that more needs to be done to explain the difference between informed consent and authorisation.
Other respondents, all from the individual respondent sector, focused their comments on the practicalities of operating such a system. They requested that "safeguards" be set up (61 Indiv) such as a time limit after which "authorisation" required to be renewed (59 Indiv), or some formal confirmation that the individual displayed an appropriate capacity to make the authorisation decision (1 Indiv, 18 Indiv). One further practical query was how the system would cope with an individual who was not carrying their donor card at the time of death and/or how would the checking of a name on the NHS Register be carried out (13 Indiv).
4.3 ROLE FOR NOMINATED PERSON?
The consultation stated:
One significant difference from the hospital post-mortem examination context is that is seems unnecessary to provide, in respect of organ donation and transplantation, that the individual could nominate one or more representatives who would have the power to authorise the organ retrieval, notwithstanding any subsequent loss of capacity on the part of the individual. It is difficult to imagine circumstances in which a person in favour of organ donation would choose the indirect approach of nominating someone to make that decision after the individual's death, rather than simply carrying an organ donor card or adding their name to the Register. There is also potential for confusion, if not conflict, where there could be both an expression of wishes and a nominated person.
The consultation asked:
IF SOMEONE HAS DECIDED TO CARRY AN ORGAN DONOR CARD OR ADD THEIR NAME TO THE NHS ORGAN DONATION REGISTER, IS THERE ANY ROLE FOR A NOMINATED PERSON?
Overall, 43 respondents provided a clear view on this issue. Of these, the vast majority (84%) envisaged no role for a nominated person in these circumstances.
The existence of a nominated person was seen as introducing the potential for uncertainty and doubt (3 Indiv, 43 Prof Rep, 59 Indiv) and could raise new ethical issues (43 Prof Rep).
Of those who perceived there to be some form of continuing role for a nominated person, this was generally regarded as one of helping to facilitate the prompt execution of the deceased's wishes as opposed to providing permission for donation/transplantation to proceed (21 Indiv, 22 Acad, 45 NHS/Med). Other functions of such a person were seen as providing confirmation that the deceased had not changed their mind (14 Prof Rep, 15 Prof Rep, 60 Indiv); providing assurance that the deceased's mental state was such that their authorisation should be considered valid (53 Pub Rep); and providing information on the deceased's medical history (37 NHS/Med).
One further issue raised was that perhaps a role for a nominated person could be carved along the lines of that provided for in the Adults with Incapacity (Scotland) Act 2000 with a proxy established to make decisions after the death of a person or whilst the person is still alive but incapacitated (2 Prof Rep, 30 Prof Rep).
SUMMARY POINTS
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
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