Ethics Council discusses mandatory declarations for organ donation

Peter Neuhaus, Director of the Charité Hospital’s General, Visceral and Transplant Surgery Clinic in Berlin, began the proceedings with an introductory report on the development of transplant medicine to date and the outlook for the future. The last few years had shown that organ recipients not only had better prospects of survival, but also enjoyed “immeasurably improved quality of life, physical and mental performance, and joie de vivre”. Another trend was that the age of organ donors was significantly increasing. In the case of liver transplants average donor age had actually doubled in recent years: given that the liver was an organ capable of self-regeneration, older people too could perfectly well be donors. Yet the proportion of post-mortem organ donation in Germany was low at under 15 per million head of population, putting the country in the bottom third in the league table of European nations. To address this problem and to encourage scientific advances in transplant medicine, Professor Neuhaus recommended that transplants should be concentrated to a greater extent in major centres, and called upon the politicians to help make this a reality.

Thomas Breidenbach, Managing Physician at the German Organ Transplant Foundation (DSO), Central Region, offered a more specific view of the situation from the practical perspective of organ donation. According to Dr Breidenbach, the reasons for the low rate of consent by family members included a concern that doctors might no longer do everything in their power to save the lives of their loved ones, as well as fear of the trade in organs and differing rational and emotional perceptions of brain death. To avoid long-term psychological issues, family members needed to be treated competently and sympathetically, as “an over-hasty yes can be just as wrong as an over-hasty no”.

In her contribution, Weyma Lübbe, a member of the German Ethics Council, addressed the ethical implications of mandatory declarations on organ donation. In her personal view, the public debate so far, which included the former National Ethics Council’s Opinion Increasing the number of organ donations: A pressing issue for transplant medicine in Germany, represented “a large-scale moral appeal to the public to declare their consent to post-mortem organ donation”. This was not readily reconcilable with the simultaneous assertion that a decision not to donate must also be absolutely respected. The speaker emphasized that a legal obligation to opt either in or out of organ donation could not be imposed without considering what was supposed to happen in the event of failure to declare. She condemned the thesis that a failure to declare, even after state involvement with the issue, automatically implied consent. Invoking the “golden rule” that individuals should themselves be prepared to make sacrifices that they expected or hoped for from others, she commented: “The reciprocity to be guaranteed is mutual respect for an individual’s personal decision, not mutual willingness to donate.”

The ensuing panel discussion, moderated by Eckhard Nagel, another Council member, was devoted primarily to the issue of how far the individual could be called upon to opt either in or out of organ donation.

As a member of the family of an organ donor and on the basis of her own experience, Marita Donauer favoured a mandatory declaration system. She summed up her conviction in the phrase “I can’t refuse to give an answer”. This meant that family members had a duty to declare one way or the other, even if it was hard for them to be absolutely certain of the deceased’s presumed wishes.

Annette Widmann-Mauz, a Member of the Bundestag  (German Federal Parliament) and Parliamentary State Secretary to the Federal Minister of Health, took the view that organ donation was an altruistic gift that could not be automatically expected. There ought to be “no obligation to donate and no obligation to declare”. Instead, other instruments should be deployed to make it easier for people to decide.

Hans Lilie, holder of the Chair of Criminal Law, Law of Criminal Procedure, Comparative Law and Medical Law at Martin Luther University, Halle-Wittenberg, considered that the matter at any rate needed to be addressed in greater depth, since a compulsion to declare could not be deduced from constitutional law. Professor Lilie was convinced that it was immaterial which model – opt-in or opt-out – was chosen as long as the deficiencies in the organization of transplant medicine had not been overcome.

Jutta Riemer, Chair of the Association of Liver Transplantees in Germany, felt that what mattered most for those concerned was to know that the organ donation had been voluntary. Everyone agreed on the need for full information to be given, and this called for a coordinated approach across the board.

When the debate was then thrown open to the floor, one suggestion was for a formal declaration procedure on a voluntary basis, while others advocated an opt-out system or even a solidarity-based obligation to donate organs. In addition, a wide-ranging public debate that included all positions, however controversial, was considered necessary.

At today’s (Thursday) plenary meeting the Ethics Council decided to establish a working group whose brief would be to draw up recommendations on the possible introduction of a mandatory declaration system.

Further information on this event, as well as an audio recording and photographs, can be accessed here.