UPDATED: Ethics think tank expresses concern over premature move to an opt-out organ donation system in England

The Nuffield Council on Bioethics today expressed concern following the announcement of the Department of Health’s consultation on ‘opt-out’ organ donation in England.

The announcement follows the Prime Minister’s speech at the 2017 Conservative Party Conference which included plans to introduce opt-out consent for organ donation.

An opt-out system was introduced in Wales two years ago and a similar system will be introduced in Scotland. The consultation announced today seeks to gather views on how an opt-out system will be rolled out in England.

The Council is concerned that the case for moving to an opt-out system in England has not yet been made, as existing evidence fails to show that the opt-out system has led to more organs being made available for transplant.

A report commissioned by the Welsh Assembly Government (WAG) published on 30 November states that opt-out has not increased organ donations.[1] In June this year, the UK Government’s Health Minister Jackie Doyle Price told Parliament “there has been no notable change in Welsh deceased donation figures” since an opt-out system for organ donation was introduced. In February, Nicola Blackwood, the then Parliamentary Under-Secretary of State for Health stated that the Government was “monitoring the impact that the change in legislation in Wales has on donation rates.” We are concerned that eight months later, the Government has introduced a consultation document that undermines its commitment to ‘monitor’ and asks the question of ‘how’, not ‘if’ opt-out should be introduced.

We are also concerned that the Government’s consultation document is potentially misleading. It states: “Under the current rules in England, a person is considered a possible organ donor following their death only if they actively took steps to consent in their lifetime”. This is not correct: agreeing to be an organ donor (via the Organ Donor Register) is just one way that people can become donors after they die; families can also consent to organ donation, regardless of whether their relative has agreed in their lifetime. To suggest otherwise could lead to a misunderstanding of current organ donation arrangements amongst the public.

There have also been misleading reports and official statements made that appear to overstate the impact of opt-out; or that link to achievements that are unconnected.

Hugh Whittall, Director of the Council, said: “We are concerned that the Government consultation goes straight into asking how an opt-out system should be introduced, rather than if it should.

“We all want to maximise organ donation in a way that is in keeping with people’s wishes. The issue is what is the best way to do this, and we need first to understand the evidence and the implications of the options.

“The Government should not be making this change until there is evidence that it works, and until we are confident that it won’t undermine people’s trust in the system in the long-term. That evidence is simply not there yet, though we do know some things that do work. Key amongst those is raising public awareness, encouraging family discussion, and better support and communication between specialist nurses and bereaved families.

“Even in systems where an ‘opt-out’ approach has been adopted (such as Spain), it is generally recognised that these are the elements that have made a difference, rather than the legal basis of the donation.

“We welcome the Government’s call for discussion with family members about donors’ wishes. However, we should be basing our legislative decisions on evidence. A decision to change the law without first evaluating evidence could have serious consequences for organ donation.”

Notes to Editors

A month before the Prime Minister made her announcement, the Council issued a statement calling for discussion around wishes for organ donation before and after death, and robust evidence before any legal change is considered.

A consultation on increasing organ donation in Northern Ireland has also just been launched.

The Nuffield Council on Bioethics is an independent body that examines and reports on ethical issues in biology and medicine. It was established by the Trustees of the Nuffield Foundation in 1991, and since 1994 it has been funded jointly by the FoundationWellcome, and the Medical Research Council.

The Council’s report Human bodies: donation for medicine and research, published in 2011, considered the ethical and social issues that arise when people are asked to donate bodily material such as organs, blood and gametes.

Footnote

[1] The Welsh Government’s report states: “analysis of the routine NHS donor data between 2010 and 2017 revealed little evidence of a consistent increase in either the number of deceased donors in Wales, or Welsh resident donors more widely, since the Act came into force.”

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