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Presumed consent

More must be done to boost tissue donation for transplantation and research.

Despite decades of scientific progress in the field of organ transplantation, there remains a crippling shortage of suitable tissue from willing donors. Actually, make that donors who have made it clear that they would be willing. Surveys in Wales, for example, have shown that although some two-thirds of people asked say that they would be willing to see their heart, liver, lungs and other tissues reused after their death, only half of those people go as far as registering their consent on the organ-donation register. The resulting shortage, according to Mark Drakeford, the Welsh health minister, means that one person dies in his country almost every week while waiting for a donor.

As Nature went to press, the Welsh Assembly was voting on a proposed change in the rules. It would see Wales reverse the donation dynamic — on death, an adult’s organs will automatically be considered for transplantation, unless that person previously made it clear this was against their wishes. A new register would record the names of those who do not wish to be classed as donors.

If passed, the ‘presumed consent’ scheme would come into force in 2015. Although the family of someone who died without registering to opt-out would have no legal right to block use of that person’s body parts, in practice officials say they would be given the opportunity to show that their loved one would not have wanted to donate. This ‘soft’ scheme is similar to that in operation in Spain. Austria takes a stronger line and its ‘hard’ opt-out means that if someone dies without registering their dissent, then their organs are considered fair game.

The vote comes at a time of increasing scrutiny of the way in which tissue taken during hospital procedures is used in medical and scientific research. Last week, Nature told the largely unexplored story of the WI-38 cell line, derived from a fetus aborted from a woman in Sweden (see Nature 498, 422–426; 2013). And Rebecca Skloot’s book The Immortal Life of Henrietta Lacks (Crown, 2010), the history of the HeLa cell line and the ethical issues it raises, continues to sell. Consent — in medicine and science — has become a key issue.

It also comes at a time when there remains a critical shortage of some tissues for research — the brains of children for example, which are needed for work on autism and schizophrenia. Advocates and patient groups are already working on ways to confront the biggest obstacle — the emotionally fraught conversation with devastated parents who have lost a child (see Nature 478, 427; 2011). By talking to the parents of children with autism about the benefits of donation, for example, they can increase the chances of gaining consent should the worst happen.

Presumed consent, with the burden placed on people and families to opt-out of tissue donation, seems a step too far at present for material needed for scientific research. But are the issues involved that different from those surrounding transplantation? Both promise better health and new life from the waste of death.

One important motivation when it comes to organ donation is that there is little alternative. If someone with a failing organ today does not find a willing donor, they may not see tomorrow. That may not always be the case. As a News Feature on page 20 investigates, researchers are using tissue-engineering techniques to build artificial hearts in the laboratory. A Letter published online this week describes the use of induced pluripotent stem cells to grow human liver tissue in mice (T. Takebeetal.Naturehttp://dx.doi.org/10.1038/nature12271;2013). And, last month, Japan announced plans to relax a ban on experiments that mix human and animal cells, which could be used to generate transplantable human organs in pigs.

For now, such research is of little comfort to those waiting for someone else to die. The planned change in Wales goes some way towards making the bodies of the deceased more widely available. And it shows that, given the chance, the kindness of strangers, as well as their consent, can be presumed.

Related links

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Miniature human liver grown in mice 2013-Jul-03

Tissue engineering: How to build a heart 2013-Jul-03

A culture of consent 2013-Jun-26

A priceless resource 2011-Oct-26

Tissue-bank shortage: Brain child 2011-Oct-26

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Presumed consent. Nature 499, 6 (2013). https://doi.org/10.1038/499006a

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