Associate Professor Catherine Waldby of the University of Sydney looks at the fraught and often frightening world of organ donation in an opinion piece.
At the end of May, a Dutch reality TV program attracted global publicity and condemnation. The Big Donor Show, produced by Endemol, the company responsible for UK Big Brother, featured a 37-year-old woman named Lisa with terminal brain cancer, and three people with end stage kidney disease.
Lisa was to choose, on screen, which of the three patients was to receive her kidneys after she died, based on the contestants' histories, responses to her questions and interviews with family and friends.
Commentators from around the world called for the program to be halted, because it sensationalised the serious issue of organ waiting lists. Finally, it was revealed that Lisa was an actor and the program was a hoax. However the contestants, who were in on the hoax, are real kidney-failure patients, and have poor prospects of receiving a kidney while on the Dutch organ waiting lists.
All countries, including Australia, have far more people on organ waiting lists than available donors, a situation The Big Donor Show had attempted to highlight, albeit in a misguided fashion.
At the beginning of 2007 in Australia 1,780 people were waiting for organ transplants, and by the end ofApril, only 73 people had donated organs, allowing 244 people to receive transplants (one donor usually provides several organs). Waiting lists continue to grow at a rate that far outstrips organ supply, and many people die waiting for a kidney or liver.
Commentators, health economists and policy makers around the world have made a variety of proposals about how to solve organ shortages. In several countries in Western Europe organ donation now takes place through an 'opt out' system, also called 'presumed consent'. That is, all citizens are assumed to consent to donate organs after death, simply because they are a citizen.
Australia, along with the USA and Britain, has an 'opt in system': that is, people must actively declare themselves ready to donate organs. Even if a donor has signed a donor consent form, the family may override the deceased's wishes, and withhold consent for organ harvest at the hospital.
Not many medical staff are prepared to go against the wishes of a traumatized family, but if Australia were to adopt an opt out system, organ donation would increase and families could still have the right of veto. This is the system in Spain, and organ donation has increased steadily every year.
Some health economists argue the regulated market for transplant organs is the best way to improve supply. Currently in Australia and all over the world, organs are treated as 'gifts'. Organs must be donated without payment, and distributed according to clinical need rather than ability to pay. This gift system helps to protect both donors and recipients from coercion, and distributes organs fairly.
No sane economist advocates a free market in organs, as this would lead to gross inequality, with poor people selling a kidney or cornea to the highest bidder, and only the very wealthy being able to afford transplant. However many economists have argued for a regulated 'futures market' for organs. An individual agrees to donate organs after death and a set payment goes to the donor's family, often in the form of funeral expenses.
Some states in the USA have implemented such a system, but it doesn't appear to have made much difference to donation rates, and it may deter as many people as it attracts. Organs have been gifts since the earliest days of transplant, and for many people, linking organ transplants with money seems ghoulish and tasteless.
If we look beyond national organ waiting lists however, there is an unregulated global black market for kidneys, corneas and ova. These tissues can be supplied while the donor is still alive. Desperate patients on long transplant waiting lists, or couples desperate for a child, have turned to medical tourism and organ brokers in India, Latin America or Eastern Europe, despite the fact that organ selling is illegal in those countries.
Organ selling involves terrible risks for the vendors. A kidney seller may have poor health for the rest of his or her life and a compromised ability to work. The cornea seller will lose the use of one eye. The ova seller risks hyper-ovulation syndrome, a sometimes fatal condition caused by the drugs she must take, and fertility problems.
Ultimately, the most important factor in the global organ trade is extreme poverty. Only the desperate would risk their lifetime health for a few hundred or thousand dollars, yet clinics have a ready supply of willing organ sellers. The challenge for policy makers and citizens in wealthy countries like Australia is to develop equitable national and international organ donation systems that maximise supply without violating the human rights of donors.