Organ donation is a fascinating, complex and emotive subject. There is a multiplicity of approaches across the world aimed at increasing organ donation rates including opt-in and out-out systems. Education and awareness programmes play an important role and increasingly governments are implementing legislation to change default options and (they theorize) modify social norms. Under many systems the role of the family in giving ultimate consent is paramount.
The Welsh Government recently passed a bill that will come into effect in 2015. This introduces a ‘soft opt-out’ system for organ donation in Wales. Under this system a Welsh resident that has registered no explicit preference may be deemed to have effectively ‘opted in’ and therefore willing to donate organs on their death.
The implications of deeming consent in this way has led to significant ethical and practical debate. There was some resistance and criticism of the legislation from faith groups, although many of their concerns are mitigated by ensuring that family consent controls are in place and that vulnerable individuals are properly protected.
The United Kingdom currently operates an opt-in system. There is no way to specifically register an opt-out. Having studied the Welsh legislation and the proposed way in which this will operate it also becomes clear that opt-in or opt-out are not binary concepts. In the UK it is possible to select which organs you are opting in to potentially donate. Statistics show that people may be willing to donate kidneys and liver, but not eyes. There are clearly some very complex underlying issues.
A blanket (all or nothing) opt-in or opt-out system may therefore reduce organ donation rates as people may be prepared to only donate certain organs under certain conditions. These options therefore need to be available when recording preferences.
A recent strategy paper on organ donation in the UK suggested that those listed on the Organ Donor Register may be given priority if they ever needed a transplant (as with the current system in Israel).
Recent proposals from Israeli Health Minister Yael German present yet another set of options. The Minister is proposing that Israeli citizens would become potential organ donors when renewing their driving licences unless they explicitly opted out. The Welsh system is similar in that an explicit opt-out is needed, although Welsh residents would become potential donors on reaching adulthood or having resided in Wales for at least six months.
Under the UK system a family can currently overrule the wishes of a deceased relative and refuse permission for organ retrieval. Many regard family consent as a critical protection which should not be revoked, but there is also a case for arguing that the wishes of the deceased should have primacy and therefore be honored.
A consultation on a bill to change the organ donation system in Northern Ireland has recently been launched by Jo-Anne Dobson MLA (a member of the Northern Ireland Legislative Assembly). This consultation explores complex questions such as the role families should play in the decision making process. It is unclear whether Northern Ireland will take a similar path to the Welsh, but the debate across the UK is significant.
The demand for organs and the available supply is a key global health challenge and different countries are exploring different options to maximize supply and improve clinical outcomes for recipients. There are complex sociological, ethical and religious concerns and always the potential for ‘unintended consequences’. Negative headlines or significant religious objection to changing the default explicit ‘opt-in’ position with family safeguards may drive higher levels of opt-out.
Yael German is no doubt wrestling with many of the same concerns as other heath legislators. Is it right to change the existing system in Israel? What safeguards might be needed to ensure that donation rates were improved and not diminished?
It is also unclear whether the money required to implement changes to legislation (training, IT systems, mechanisms to register opt-outs etc.) if invested in awareness and education programmes might yield the same or better results.