Today as the Welsh Government concludes its consultation on presumed consent for organ donation, the charity, CARE, has called on it to now conduct a consultation on presumed consent.

Dan Boucher from CARE explained, ‘There is a fundamental problem with the consultation that closes today. There is an elephant in the room. Unbelievably the consultation does not ask the key question, do you think moving to a system of presumed consent is a good thing?’¹

‘Ironically – although perhaps not surprisingly – the Welsh Government consultation on presumed consent, presumes consent, and simply asks questions about how an opt-out system should be implemented.’

Dan Boucher continued, ‘This consultation eloquently demonstrates the dangers of presumed consent – which is, of course, not consent at all – as it relates to the prevailing governing culture. Once you dispose of consent in one area of your relationship with the state, the precedent has been set for it to be disposed of in other areas. Indeed on this occasion we can see the tendency running away with itself as the Welsh Government is not even bothering to ask people what they think about presumed consent in the consultation, ahead of the introduction of any legislation!’

The failure to ask the key question is deeply concerning, not least because it makes it harder for people to reflect on important research developments on the basic merits of presumed consent since the ‘consultation’ launch.

At the end of last year the leading journal in the field – Transplantation – published a powerful article by a series of experts at John Hopkins University based on their assessment of 13 European countries that have moved to presumed consent. Their conclusion was very clear. Presumed consent is not the answer!²

Study leader Dr. Dorry Segev, an associate professor of surgery at the Johns Hopkins University School of Medicine, said, ‘With opt-out the perception becomes, we will take your organs unless you take the time to fill out a form. That’s a dangerous perception to have. We only want to use donated organs from people who intended to donate.’³

Trust is an incredibly important component of the patient-doctor relationship which is threatened by the advent of presumption, even if relative’s views are taken into account.

The truth is that some countries with presumed consent have lower levels of organ availability than we do and that although Spain (which now has higher rates) introduced presumed consent in 1979, organ availability did not increase until 1989 when other changes were made.

Boucher concluded, ‘The great challenge that we face is increasing the number of available organs so that less and less (hopefully someday none) people will die waiting for available organs. We cannot afford to take high risk steps that dispose of consent and threaten patient trust when it is so clear that some countries with presumed consent have lower levels of organ availability than we do and those that have embraced presumed consent and enjoy higher levels of availability achieved this after making other changes.’

Notes

1. Nine questions are asked. None asks whether people support presumed consent.

Persons who will be included in the soft opt-out system
1. The White Paper sets out individuals must have lived in Wales for a sufficient period of time before being included within the soft opt-out system.
a) What factors should be taken into account when determining whether an individual ‘lives in Wales’?
b) What should that period of time be?
2. Do you agree discussions between clinicians and family in the event of an individual’s death, will identify and safeguard those who lack capacity?
3. Do you agree that the soft opt-out system for Wales should only apply to persons aged 18 years and over? If not, why?
The operation of the soft opt-out system for Wales
4. Do you agree with the retention of the existing Organ Donor Register to be operated in conjunction with the soft opt-out system?
5. In relation to the record keeping options for the soft opt-out system –
a) Which of the suggested options do you prefer? (See paragraph 56 of the White Paper.)
b) Are there other options you feel would provide an effective and secure system?
6. What is the role of the family in safeguarding the wishes of the deceased?
7. How can the Welsh Government ensure that the public awareness campaign is effective?
8. The Welsh Government would welcome your views on the potential impact of the proposed soft opt-out system for the Welsh Language, race, faith, disability, age, sexual orientation, gender, gender reassignment, marriage or civil partnership.
9. The Welsh Government has asked a number of specific questions; if you have any related issues which have not been specifically addressed, please record them here:
http://wales.gov.uk/docs/dhss/consultation/111107orgdonwpen.pdf

2. Brian J. Boyarsky, Erin C. Hall, Neha A. Deshpande1 R. Lorie Ros1 Robert A. Montgomery1
Donald M. Steinwachs, and Dorry L. Segev, ‘Potential Limitations of Presumed Consent Legislation,’Transplantation 2011.

3. http://www.hopkinsmedicine.org/news/media/releases/presumed_consent_not_answer_to_solving_organ_shortage_in_us_researchers_say