Introduction by Jo-Anne Dobson:
I will be introducing a Bill on the floor of the Assembly in the coming months which will seek to change the law on Organ Donation, moving from the current opt-in to a new opt-out system.
Purpose of the Bill:
I will be introducing a piece of legislation, the ultimate aim of which is to save lives by increasing the number of people who make their organs available for transplantation. This will have the knock-on effect of increasing the availability of organs to save the lives of those currently waiting on a suitable organ for transplant.
Case for Change:
The current system for organ donation in Northern Ireland is an opt-in system. This means that people who choose to donate their organs have to sign the organ donation register.
The percentage of the population in Northern Ireland who have signed up to the Organ Donor Register is lower than other regions of the United Kingdom, currently standing at around 30%. This means that two in three people are not registered, despite the fact that repeated UK-wide surveys have shown up to 90% of individuals are willing to donate their organs after death.
In recent years, the government has ben doing a number of things aimed at raising this percentage, for example, increasing publicity, and actrions recommended in the report of the Government's Organ Donation Taskforce. However, while every organ donation is valuable and transforms the lives of those waiting for a transplant, the sad fact remains that on average 15 people die every year in Northern Ireland whilst waiting for a suitable organ to be found.
Increasing the number of people who pledge to donate their organs can therefore make a massive impact.
The Bill proposes moving from the present opt-in system, where people must take the conscious decision to sign the Organ Donor Register, to a new system where everyone would be opted-in and those who do not wish to donate their organs are required to consciously sign off the register, thus indicating that they do not wish to donate.
Comments on Northern Ireland Assembly Consultation on a Bill to Change the Organ Donation System in Northern Ireland
The Royal College of Physicians of Edinburgh is pleased to respond to the Northern Ireland Assembly’s consultation on a Bill to Change the Organ Donation System in Northern Ireland. Our comments are as follows.
Question 1: Do you agree that a change in the law is needed to make more organs available for transplant?
Answer: Unsure.
Comments: The UK currently has a voluntary ‘opt in’ system, encouraging people through educational campaigns to register as donors on the online Organ Donor Register. Despite investment and publicity about this register, less than 30% of the population have registered as donors.
In practice in the UK, consent for organ donation is always sought from the next of kin. Unfortunately, approximately 40% of families approached refuse consent for organ donation. If someone has previously registered their desire to be a donor then the refusal rate is lower (approximately 10% v. 50%).
The available international evidence supports the fact that ‘opt out’ legislation is associated with increased rates of deceased organ donation. However, the legislation itself may not the major determining factor for organ donation as some countries with “opt in” systems still have higher organ donation rates than countries which have adopted “opt out” legislation.
There are differing opinions within the medical profession and society at large regarding an ‘opt out’ system. Some erroneously believe that “opt out” legislation effectively means acquisition by the state of ‘body parts’ and removal of the altruistic aspect of donation is of concern to some. These and other ethical issues have prevented the global adoption of presumed consent legislation.
However, the higher rate of organ donation in ‘opt out’ jurisdictions persists even when the next of kin are still asked for their approval before retrieval (this is termed ‘soft’ opt out as opposed to ‘hard’ opt out when the relatives are not consulted). It is not legislation that will impact organ donation.
A higher rate of organ donation will reflect increased public awareness, societal attitudinal change to donation, and improved clinical infrastructure.
Question 2: Soft opt-out system. Do you support this move?
Answer: Yes.
Comments: The Colleges supports this move provided there is a parallel process of public education about the benefits of organ donation and improved infrastructure to support families and clinical teams at the time of organ donation.
Question 3: Do you agree the family should continue to play a key role in the decision as to whether organs should be donated?
Answer: Yes.
Comments: Public confidence in a soft opt out system would be quickly undermined if family did not continue to play a key role in decision making. The family should always be consulted about the request to harvest organs and asked about the expressed wishes of the deceased.
Question 4: Do you agree an exemption should be made to ensure persons under the age of 18 are not automatically included on the register?
Answer: Unsure.
Comments: There are shades of opinion on this issue given that patients under 18 are able to give informed consent for other medical procedures. However, a more explicit “opt in” approach may be helpful for those under 18, particularly as it is likely to be their parents who are asked for consent to harvest organs.
Question 5: Do you agree that protections should be put in place for those who lack capacity?
Answer: Unsure.
Comments: By definition, adults without capacity can make no legally binding decisions and cannot give “proper consent” for or against donation. Under a proposed soft “opt out” system, consent would be presumed until action was taken to remove an individual from the donor list. It may therefore be difficult to determine whose rights were being protected - the deceased with lack of capacity or the family who may not support donation.
Question 6: For vulnerable adults and those who lack capacity, which of the following should have a role in safeguarding their rights?
Answer: Both – informed family members and qualified medical practitioners. The College understands there is legislation before the Assembly currently to define mental capacity and this may help to clarify the position. Good practice should always require consultation with the family.
Question 7: How long should people live in Northern Ireland before they become subject to the soft opt out scheme?
Answer: Minimum of 6 months or for long enough to allow health records to be available and for the deceased to have had an opportunity to opt out. See also Q9 below.
Question 8: How do you feel the change to a soft opt out system would impact on human rights?
Answer: Not at all.
Comments: The donor is deceased. From an ethical point of view the deceased does not have human rights. This is not an argument that would be fully appreciated by society. However, such a move should enhance the recipient’s right to life.
Question 9: Do you agree that where a person’s identity is unknown that they should be excluded from donating organs?
Answer: No. However taking this stance leaves open the possibility that a number of “opt out” people will be missed and medical teams harvesting organs should be protected with clear guidance.
Question 10: Further comments?
Answer: None.