by Emily
Postan and Annie
Sorbie
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.
