Recent developments indicate a massive change to organ donation under the NHS system is set to happen, subject to Parliament approving what is known as “Max’s Law”. This is based on the experiences of Max Johnson, who successfully underwent a heart transplant. His story has since been supported by publications such as the Daily Mirror. The consultation received 17,000 consultation responses. The report that addresses these responses can be found here.
Currently, an individual must opt-in by signing the NHS Organ Donor Register in order to become an organ donor. Research from the consultation shows that approximately 82% of people support organ donation, yet only 37% have recorded their wishes on the NHS Organ Donor Register. It has been argued by the British Heart Foundation that introducing an opt-out system in England would reflect the views of the general public better.
Under the new plans, competent adults will be presumed to be organ donors. However, he following groups of people are exempt from the application of the bill, should it become law:
Children under 18 years old;
Individuals who lack the mental capacity to understand these changes;
People who have not lived in England for at least 12 months before their death.
The new system would involve a "soft opt-out", where families could override the presumption in favour of donation if they strongly believed their deceased relative would not have wanted it. The justification of the policy is that it would save “up to 700” lives per year. In turn, the ability to have a wider pool of donors will of course give those in dire need of a transplant the opportunity to receive the treatment they need and to make the recovery they desire. Further, the Government hopes this change in the law will encourage people to discuss the issue of whether they would want to be a donor in the event of their death with their families. This is to address the issue that fewer than half of families give consent for their loved one's organs to be donated if they are unaware of their wishes.
Potential issues may arise with this policy, which for the purposes of this article are hypothetical. Whether this policy will stand up scrutiny under the European Convention of Human Rights is yet to be seen. Any number of circumstances may arise. For example, whilst the register will include an option for people to state their faith, there may be situations whereby an individual converts to a different religion (and forgets to update their opt-in/out position). Further issues may arise around the general promotion of the policy and whether it will be invalid if individuals were not aware of the existence of such a policy. One could also see difficulties arising should there be administrative errors and the means of rectifying those issues. The policy does, however, appear to go to a great deal to ensure that the beliefs (both religious and cultural) as well as an individual’s wishes are respected.
More strikingly, however, is the fact that it could be argued that it the Government has effectively bypassed the autonomy of its citizens and that this is a step too far into the private domain. Further, it could also be argued that this is a decision that individuals are best placed to make themselves and that if an individual wishes to donate, the onus should be on them to opt-in. As noted above, over half of families do not give consent for their loved one's organs to be donated if they are unaware of their wishes. This issue is not sufficiently addressed by the policy. There may still be many examples whereby conversations/discussions take place (which indicates an individual is against organ donation) but the opt-in is not removed. In such circumstances, it is unclear as to what will happen. Whether there will be sufficient safeguards in place is yet to be seen. It may well be that “test cases” appear before the: High Court, Court of Appeal, Supreme Court or even the European Court of Human Rights. It will be interesting to watch the developments in the bill as they unfold in the House of Commons later this year. It will be equally interesting to observe how such a policy and the legislation are applied to the legal framework.
It ought to be note that there is a similar system in Wales. Despite these developments in Wales, donations did not initially increase and showed the new system depended on widespread public support as note by Fiona Loud, Policy Director of Kidney Care UK. Scotland currently has plans to introduce a similar system and Northern Ireland has taken preliminary steps by expressing interest. It is clear that opinion is gaining momentum in favour of opting in for organ donation by default.
The bill will return to the House of Commons in the autumn to be voted on. If it is passed, the bill is expected to come into effect in England in the spring of 2020. Whilst there is a level of uncertainty in some areas (and depending on the stance one takes) this is a welcome development.