Organ donation depends on trust
Last week, the White House announced public private initiatives to help shorten the waiting list for organ transplantation in the USA, on which 120 000 people currently sit in need of a kidney, liver, heart, or lung. 7000 of them will die waiting this year. The gap between supply and demand continues to grow. That 95% of Americans are believed to support organ donation but only 50% have signed up means there is considerable need for change in how we assure organ supply. Some announcements seem long overdue: 30 transplant medicine centres have now agreed to share information on hard to match patients. The country's largest health care insurer, United, has agreed to cover travel and lodging costs for living kidney donors. The current bureaucracy whereby donors must register with their state department for motor vehicle licensing will be replaced with online registration. Other announcements are progressive: partnerships with major technology companies like Facebook, Tinder, and Twitter to harness social media and target public education to a younger generation. And more than US$200 million have been pledged for new technologies and basic research to repair, replace, and eventually fabricate needed tissue and organs. All these commitments strike at the heart of one matter: an effi ciency whereby donating is easy for motivated individuals, and all donated organs get used. As the USA rolls out their plans, they can look abroad for evidence of what works to improve donation rates. Wales revealed last week that its "soft opt out" legislation has resulted in a doubling of organs in the 6 months since the programme started. 32 of the 60 organs removed from donors in Wales were from ten people who had not registered whether they wished to donate; the other 28 organs were from 21 deceased people who were on the organ donation register. Under this scheme, individuals can explicitly opt out or opt in to be donors by registering online, but for anyone who does not register a preference, their consent is assumed. Spain, which has had a similar policy since 1979, has consistently had the highest organ donation rate in the world 36 deceased organ donors per million people. But Spain emphasises that its success is also based on building an organised, professionalised system that patients can trust. "If people donate less, it must be something we have done wrong" says Rafael Matesanz, the head of the national transplant group. Indeed, a truly sustainable future where the expectation of gifting and receiving organs is normalised and valued by all in societies can only happen with trust. A trust that goes beyond rational confi dence in the effi ciency or resourcing of a system, but one that believes the system to be just and fair. Trust that one's most personal gift of a public good is valued. Failing to recognise the importance of trust may limit these considerable new investments to close the organ donation gap. For example, despite various policies to stimulate organ donation over the past 20 years in the USA such as tax deductions for expenses, paid leave, and public education none have had a real eff ect on organ donation rates. This outcome suggests more personal and altruistic motives need to be better leveraged and valued. An example of how precarious yet signifi cant trust can be is in Germany where donor rates have failed to recover from the 2013 transplantation scandal where patient data were falsifi ed so doctors could put their patients higher on the priority list: just 10*4 per million in the latest estimates from the international registry of organ donation. Trust in justice and fairness extends to the most delicate aspects of organ donation. Donors must be comfortable knowing that their own expressed wishes will be respected after death. The Ontario registry last week reported a worrying rise in grieving families blocking the wishes of their loved ones. Similarly, the UK's National Health Service transplant authority estimates that 1200 potential transplantations have been blocked by families since 2010. Neither authority seems to have plans to change policy to avoid families over ruling donor wishes; but to ensure trust in the system, they should reconsider their decision. Technology, scientifi c research, and social media are undoubtedly important areas for investment, and the new US announcements themselves will bring awareness to an unsolved problem. But understanding and building trust should be more central in eff orts to create sustainable organ donation. The Lancet For more on the White House initiative Saving lives and giving hope by reducing the organ waiting list see https: www.whitehouse.gov/ blog/2016/06/13/saving livesand giving hope reducingorgan waiting list
The Lancet