28 November 2018

Mason Institute advises Scottish government on organ donation policy

On Tuesday 27th November 2018 MI Deputy Directors and policy portfolio leads, Emily Postan and Annie Sorbie, attended the Health and Sport Committee to provide evidence on our MI consultation response to the Human Tissue (Authorisation) (Scotland) Bill. This Bill makes provision for the authorisation of the removal and use of parts of the body of a deceased person for transplantation and other purposes.  Significantly, it proposes that Scotland move from the current ‘opt-in’ system, in which an individual’s organs may be used for transplantation only when they (or, after their death, a close relative) have explicitly authorised this, to one of ‘deemed authorisation’. Under the proposed law, adults who have not formally registered their wishes will be deemed to have authorised the use of their organs for transplant purposes, with some exceptions for particular groups of persons and types of body parts. Under the new law the option to ‘opt-out’ of donation will be placed on a statutory footing (as will a third option of explicitly ‘opting in’).   

In our MI consultation response we had outlined our broad support for the policy objectives of the Bill, but emphasised that legislation is but one step towards improving donation and transplantation rates, and that a holistic package of regulatory, social and ethical measures are necessary to secure these objectives. These include the need for far-reaching public information programmes, training and resourcing of transplant coordination professionals, and comprehensive evidence-gathering about the impacts of the legislative changes. 
Also giving evidence in this meeting of the Committee were Professor Alison Britton, Professor of Healthcare and Medical Law and Convenor of the Health and Medical Law Sub Committee for the Law Society of Scotland, and Dr Calum MacKellar, Director of Research at the Scottish Council on Human Bioethics.

In her oral evidence Dr Postan was able to answer the Committee’s questions on several issues. 

The Committee was interested in the question of how the respective interests would be weighed and met under the new legislation, particularly whether relatives’ wishes might, in practice, often override those of deceased persons as they do under the current law. Under the proposed law, relatives will not have a legal entitlement to override the express or deemed wishes of the deceased, but if they present evidence that the most recent views of the deceased differ from those registered or deemed to hold, then this will be taken into account. Dr Postan suggested that providing guidance to transplant coordinators, to support them in judging what counts as reasonable evidence of changed wishes, could be of great value and noted the risks of sending mixed messages to family members about their degree of their involvement in decision-making when the deceased person’s wishes are not ambiguous. Along with the other witnesses she emphasised the need for a far-reaching communications and training strategy to support the changes in culture and expectations that will be needed if the new law is to function as intended. 

Dr Postan responded to the Committee’s questions about the protection of adults lacking capacity under the proposed law by suggesting that as currently drafted the law perhaps reflects too binary a conception of capacity and that it ought to be interpreted in a way that is consistent with the recognition under the Adults with Incapacity (Scotland) Act 2000 that capacity can fluctuate and should be assessed in a context specific manner and that individuals should be supported to make decisions when they can. 

The Committee reflected concerns of some consultees about the ethics and legality of also making pre-death procedures (preparatory to donation) subject to ‘deemed authorisation’. Dr Postan responded that even though these procedures might not be for the clinical benefit of the patient, as long as they are minimally invasive and do not cause discomfort or hasten death, they may be seen as being in the best interests of the patient (and therefore both lawful and ethical), insofar as they are a necessary and anticipated part of fulfilling their wishes to act as donors. 

This work exemplifies the MI’s commitment to bringing our interdisciplinary approach and research to bear on practical questions. If you would like to bring a consultation to our attention or to discuss the possibility of working with us on a particular policy matter, please get in touch with us by emailing Emily Postan and Annie Sorbie.