Jansen, N. E., Williment, C., Haase-Kromwijk, B. J. J. M., & Gardiner, D. (2022). Changing to an Opt Out System for Organ Donation—Reflections From England and Netherlands. Transplant International, 133.
Abstract: Recently England and Netherlands have changed their consent system from Opt In to Opt Out. The reflections shared in this paper give insight and may be helpful for other nation considering likewise. Strong support in England for the change in legislation led to Opt Out being introduced without requiring a vote in parliament in 2019. In Netherlands the bill passed by the smallest possible majority in 2018. Both countries implemented a public campaign to raise awareness. In England registration on the Donor Register is voluntary. Registration was required in Netherlands for all residents 18 years and older. For those not already on the register, letters were sent by the Dutch Government to ask individuals to register. If people did not respond they would be legally registered as having “no objection.” After implementation of Opt Out in England 42.3% is registered Opt In, 3.6% Opt Out, and 54.1% has no registration. In contrast in Netherlands the whole population is registered with 45% Opt In, 31% Opt Out and 24% “No Objection.” It is too soon to draw conclusions about the impact on the consent rate and number of resulting organ donors. However, the first signs are positive."
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"There had been many failed attempts to introduce Opt Out legislation to England over the last 30 years but was achieved on 20th May 2020. In October 2017 the Prime Minister stated her intention to shift “the balance of presumption in favour of organ donation” and “introduce an opt out system for donation.”
"Fortuitously a parliamentarian from the opposition party had successfully had his name drawn from a legislation ballot (a system which allows a few “Private Members Bills” to be considered by parliament from a randomly chosen subset of legislation suggestions), for a new Opt Out Bill. This led to an unusual alignment of opposing political parties, working together on a new policy. Due to this cross party support, the Bill progressed through Parliament and never had to be put to a vote.
"England’s Opt Out legislation built on the positive experience in Wales and Parliament was further reassured by the response to a public consultation on the draft Bill, which asked how Opt Out should be introduced. The Government usually expects between 200 and 500 responses; over 17,000 responses were received. The responses were supportive and gave a strong steer for the issues needing to be addressed.
"The main issues raised by the public were: the need for autonomy and individual choice; the role of the family; the need to respect faith and beliefs through the donation process. The government worked closely with NHSBT to identify ways to ensure that these issues were addressed. Ministerial commitments also secured additional resources such as increased recurrent funding.
"The final inspiration came from two young people—Max Johnson and Keira Ball. When the Bill was introduced, Max Johnson, a 9 year old boy, was in desperate need of a heart transplant. The UK media—particularly the Mirror newspaper—campaigned for the introduction of Opt Out legislation. Max’s life was saved through the gift of donation by Keira Ball, also aged nine, who tragically lost her life in a road traffic collision. The Opt Out legislation is known as Max and Keira’s Law, in their honour.
"Netherlands
"On the 1st of July 2020 the Opt Out system for organ donation was implemented in Netherlands. Changing the organ donation law from an Opt In consent system into an Opt Out system had not been easy. It took more than 12 years of political discussion to reach the milestone of a majority.
"In 2012 a member of the House of Representatives prepared a Bill to change the consent system into an “Active Donor Registration.” On the 16th of September 2016 the Bill was passed by the smallest possible majority in the House of Representatives, 75 members voted in favour of the Bill and 74 members against. On the 16th of February 2018 the vote in the Senate again ended in a close call, 38 senators voted in favour of the Bill and 36 members against. The Bill could only pass after a required amendment to develop a “Quality Standard Donation,” which describes the role of the doctor and the family in the donation conversation, based on the different outcomes of the Donor Register.
"The Active Donor Registration means that Dutch residents without a registration in the Donor Register, 7 million, will be asked by letter to register their donation preferences (same options as in the Opt In system). If they do not respond to a first and second letter, they will receive a third and final letter with the confirmation that they will be registered as having “No Objection” to organ and tissue donation. Under the new legislation “No Objection” would legally be considered the same as a registration of “Yes, I want to be an organ donor.” Registrations can be changed 24 h a day via the Internet. It could therefore be argued that while the change in law was to introduce Opt Out, it has similarities to a model of mandated choice for organ and tissue donation (6).
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