More than 5,000 people in the UK, that’s 80% of the organ transplant waiting list, are waiting for a kidney, yet only around 3,000 transplants are carried out each year. Around 250 people die a year, which is about five people per week, waiting for a transplant.
Our position on:
Patients that experience complete kidney failure require lifelong dialysis treatment or a transplant in order to survive. Transplants are the optimum treatment in terms of survival, rehabilitation, quality of life, and cost for patients on dialysis. Transplanted kidneys last on average around 10-15 years, and Kidney Research UK is funding vital research into improving the lifetime and functionality of them. We are also committed to helping improve the organ donation rate and increasing the number of patients who can be treated with a viable transplant.
Unfortunately, waiting lists for transplants of all types continue to increase in almost every country, including the UK. This means many people who could benefit from a kidney transplant, remain on dialysis.
The Human Tissue Act of 2004 was intended to improve legislation around the removal, storage, use and disposal of human tissue and organs. Kidney Research UK played an active role in its development, as it carried significant implications for organ donation and kidney transplantation.
The Act sought to clarify the issues of removal and retention of organs and tissue and to rebuild public confidence in the process. The purpose of this was to set out in law the consent to donate, giving priority to the wishes of donors and not to their relatives.
Currently, the wishes of many people who have registered to donate are overruled by their families, denying hundreds of patients the chance of a transplant.
The new Human Tissue (Scotland) Act, which came into force in September 2006, makes it clear that if someone wanted to donate, their wishes should be respected.
However, if the family or those close to a person who has died object to their donation, for whatever reason, healthcare professionals are required to discuss the matter sensitively with them and encourage them to respect the deceased's wishes.
In 2015, the Human Transplantation (Wales) Act came into effect. This introduced a soft opt-out system for consent to deceased organ and tissue donation. Wales was the first UK country to introduce such a system.
Improving donation rates
Kidney Research UK believes that more needs to be done to improve organ donation rates across the UK and that a ‘soft’ system of presumed consent for organ donation would help combat the severe shortage of organ donors in this country. The Welsh Government’s decision to implement its own soft opt-out represents an important case study, alongside the lessons learnt from other European countries who have adopted a similar approach.
Presumed consent is not the complete answer and should be seen as only one of a number of measures that should be introduced to boost organ donation rates.
This additional set of measures to boost organ donation rates include:
- Infrastructure and clinical practice – making sure we use more donated organs for transplantation. Sometimes people die in circumstances where timely organ retrieval is very difficult. For controlled deaths, however, the NHSBT 2020 strategy addresses a number of areas where infrastructure and clinical practice need to improve to increase the number of transplantations. Sufficient attention and urgency is needed here to ensure any increase in potential donors is not wasted.
- The need for more research - more research is vital to shorten the waiting list and make more of every donation opportunity. Kidney Research UK has been funding research in this field for some time, but we want to see a step change in making transplanted kidneys work better and last longer.
- Family consent – encouraging a cultural change around organ donation and transplantation requires a long-term plan which could help overcome the main barriers to organ donation, which is family consent.
- Attitudes to organ donation - stigma and religious obstacles to organ donation currently lead to very low numbers of donors, and high rates of objection from families after death, especially among Black, Asian and Minority Ethnic (BAME) communities, which are in turn at higher risk of illnesses such as kidney disease and thus are over represented on the organ transplant waiting list. Part of Kidney Research UK’s work to improve health equalities amongst BAME communities addresses these issues through our Peer Educator programme.
Whilst the majority of transplants come from deceased donors, living donations have increased considerably. Living donations are usually where a family member or friend donates to a loved one. Non-directed altruistic donations, however, are when someone is prepared to donate a kidney to an unknown individual who is waiting for a kidney transplant. Such a person needs to go through a thorough medical assessment to be certain that they are fit to donate, just as they would do to give a kidney to a loved one.
The procedure is safe, as humans can exist quite happily on one kidney.
Non-directed altruistic kidney donation is an extraordinarily brave and selfless act, with no knowledge of the person who will benefit from the subsequent gift of life.
Kidney Research UK fully supports the concept of non-directed altruistic donation within the appropriate medical procedures outlined above. It is an important addition in the fight to make more kidneys available for transplant, along with the advances in research that are funded by the charity.
Although we approve of compensating altruistic donors so that they are not financially disadvantaged as a result of their decision, we do not condone any scheme whereby people receive a monetary reward in exchange for an organ.
Monetary reward for organ donation
With a severe shortage of registered organ donors here in the UK, it has been suggested that people could be paid to become live kidney donors – a system known as regulated paid provision.
While Kidney Research UK is keen see more people join the Organ Donor Register, the charity does not support any system of ‘paid provision’. Although we approve of compensating altruistic donors to ensure they are not disadvantaged as a result of their decision, we do not condone any scheme whereby people receive a monetary reward in exchange for an organ. The decision to become a living organ donor is one which is extremely personal and should not be motivated, influenced or incentivised by the prospect of financial gain.
Paid provision could very well result in the abuse and exploitation of vulnerable people – people who might have lost their jobs, be in severe debt or are under duress. The idea that you can sell one of your organs to pay off a substantial debt, such as a loan, would undoubtedly appeal to some people. However, if money is their only motivation, they might find that they come to regret such a decision at a later date.
We must look to increase organ donor rates and curb the number of people in the UK who die while waiting for a kidney transplant. It is for this very reason that Kidney Research UK continues to work tirelessly to help fund further research into kidney disease. However, we would like to see alternatives such as altruistic donation and presumed consent explored further, as opposed to introducing regulated paid provision. The number of altruistic organ donors continues to rise in the UK, and an opt-out system for organ donation has proven to be highly effective in other European countries.
Other sources of organs for transplantation
Another source of organs for transplantation is from animals. Despite advances in this area of xenotransplantation, much more research is required before the use of animal organs for humans.
Reviewed: Dec 2017