On June 11 the Scottish Parliament passed the Human Tissue (Authorisation)(Scotland) Bill by 116 votes in favour, three against and two abstentions. In watching the debate in Parliament, however, and reading the subsequent news items, one would be forgiven for believing that Parliament had decided to change the system from an opt-in to a soft opt-out system for organ removal for transplantation after death.
Even the BBC website headline indicated ‘MSPs vote to approve opt-out organ donation system’. In addition, the official parliamentary explanatory report to the Bill stated that the aim was “to introduce a ‘soft’ opt-out system of organ and tissue donation”. But all this was a blatant act of misinformation – an act which undermined democracy.
In this regard, it is important to note that an opt-in system enables persons to instruct that their organs be removed for transplantation after death (for example, by carrying a donor card, informing relatives or joining a register) while the organs from all those who have not left such instructions cannot be removed.
On the other hand, an opt-out system enables persons to instruct that their organs not be removed for transplantation (for example, by carrying a refusal card, informing relatives or joining a register) while the organs from all those who have not left such instructions can legally be removed after death. This includes a soft opt-out system whereby nearest relatives have a final say as to the removal of organs or a hard opt-out system whereby relatives do not have a legal say.
On this basis, the Scottish Bill was not, in fact, introducing a soft opt-out system since such a scheme had already been in existence for many years under the Human Tissue (Scotland) Act 2006. This has already enabled about 5,000 Scots to opt-out and register their opposition to their organs being removed for transplantation after death.
In fact, what the Bill was legalising was a form of hard opt-out system for the most common organs such as the heart, kidneys, liver, and eyes, where the nearest relatives, if they do not know the wishes of the deceased, would not have any legal right to stop certain organs being removed, a system which is generally considered as unduly traumatic for relatives in most other European countries.
Moreover, the Bill now enables organs to be removed from a deceased person and used for research, education, training and other purposes, even if he or she has left no wishes in this regard. This is because when relatives have no actual knowledge that the deceased was unwilling for his or her organs to be used in such a manner, they may still authorise the use of organs for such purposes – a possibility which is especially concerning, since biological body parts can now be used for ethically sensitive research such as the development of reproductive cells (artificial sperm or eggs) to create, for example, human embryos for research.
In this context, most individuals in Scotland may not be aware that silence can mean authorisation. Even if they do not want their organs to be used for such purposes, they may find it difficult to express such a wish since the present opt-out register does not specifically include the use of organs for research.
So how was this unethical situation made possible? In a way, this arose because many MSPs had not really examined, nor read, the Bill in any detail. Indeed, since the Bill was an amendment document modifying the original Human Tissue (Scotland) Act 2006, and because no new Act, as amendment, was ever published by the Scottish Parliament, it was very difficult to understand what the Bill was actually proposing. As a result, many MSPs just relied on the official explanatory reports without spending a large amount of time carefully examining the legalese.
Moreover, when the legislation was actually discussed by a few MSPs, a certain amount of confusion arose which was even noted in the health committee examining the Bill. As a result, it is very unlikely that more than a dozen MSPs from the 129 in the Scottish Parliament would have been able to correctly differentiate between a soft and a hard opt-out system or understand what they were actually voting for.
The few that did were guided by a handful of sympathetic senior civil servants who prepared reports allegedly presenting the main elements of the Bill and by one very large healthcare charity which had a specific agenda in pushing for change.
As a result, the significant ethical questions and concerns were not really addressed by parliament. Moreover, most MSPs seemed to be somewhat gullible in their compassion when a simple solution to increase the number of organs available for transplantation was presented (a solution that would have been implemented decades ago had it not been associated to real ethical concerns).
In the future, therefore, it would be preferable if a real ethical debate (a kind of court case) between those who actually understand the proposals in a Bill could become a formal part of the legislative process on complex topics such as with new transplantation systems. Moreover, the speed during which the final stages of the Bill go through parliament (often just a matter of days) should be revised since this undermines and discourages any input from member of the public working with their MSPs.
Very real questions now exist concerning the responsibility and professionalism of MSPs as well as the reputation and competence of the Scottish Parliament. Misinformation and confusion can never serve democracy.
Dr Calum MacKellar, director of research of the Scottish Council on Human Bioethics.