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Organ Donation and Transplantation - What details are given about the kidney donor?

 

Key Points

  • The feelings of a donor family mean that no personal information about the donor can be given to a transplant recipient.
  • Kidney donation after death is normally a great source of consolation to a family.
  • A kidney recipient can usually send an anonymous thank you to a donor family.

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Your rights to know about details of a transplant

Normally, if you have an operation you have a right to be told about all the details of the surgery. This is not the case after a transplant. The guidance from the Department of Health and professional bodies is quite clear. This says that when a transplant organ is from a deceased donor (has come from someone who has died), the confidentiality and feelings of the donor family have priority over the rights of the person receiving the kidney. This does not mean that there is complete secrecy, and transplant teams are sensitive and flexible in their dealings with donor families and transplant recipients. The outline given here, however, applies to the usual practice of transplant teams in the UK.

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What you will be told

You can be told the tissue match between yourself and the kidney being offered. The tissue match is described elsewhere (click here for details), but you can be told whether you have a ‘6 out of 6’, or ‘3 out of 6’ or whatever match with the kidney.

You can ask if there are any problems with the kidney, for example, is there was any accidental surgical damage during retrieval, or has it been out of the donor and in ice for a long time. Generally, the longer the kidney has been out of the donor the less chance it has of working well. However, a transplant has a good chance of working even if it has been on ice for 48 hours.

You can ask if there were any medical problems with the donor which would affect the survival of the kidney. For example, sometimes doctors will take kidneys from a donor who has partial kidney failure, or is receiving temporary dialysis. It is safe to take kidneys from people with most types of brain tumour, but for some brain tumours there is a risk of the recipient getting a brain tumour some years after the transplant. There is a European Directive requiring potential recipients to be told of the risks if kidneys are taken from a donor with these types of brain tumour.

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What you will not be told

The transplant team will not tell you the name or age (an age range will be given) or ethnic origin of the donor, or where they lived. The cause of death will not be given if it might allow the recipient to guess any information about the donor, or might be upsetting to the recipient. For example, some donors have died in very tragic circumstances and it might be possible to identify the donor from newspaper reports if even general information was given to the recipient.

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Feelings in the donor family

Asking a family for permission to use organs from someone close to them who has just died is handled sensitively by people called Transplant Coordinators, who specialise in this area and have a lot of training. It is important to realise that death has occurred before anyone is asked about transplantation, and the issue of transplantation cannot make people feel worse than they do already. A family has to give permission for the organs to be used. The use of organs for transplantation is generally a source of great consolation to a family, allowing them to feel that something good has come out of a bad situation.

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Feelings in the transplant recipient

Sometimes transplant recipients feel guilty about taking a kidney from someone who has died. This is understandable, but it is very important to realise that transplantation has not caused a death, but is actually a good thing that has come out of a tragic circumstance. Taking a transplant from someone who has died is not just looking after yourself, it is providing the donor family with consolation.

If you want to talk about your feelings on this subject, do contact your local medical team, nurses or Transplant Coordinators, who are happy to talk and explore areas of concern. However desperately someone wants to get off dialysis and have a transplant, they still have caring feelings for others and particularly the families of any kidney donors.

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Contacting the donor family after transplantation

The donor family receive follow up and any counselling required from the coordinators in the transplant unit. They will receive a letter of thanks from the hospital, in which a brief comment will be made on which organs have been transplanted and how the recipients are doing.

Over a period of time after the transplant, many recipients are keen to express their gratitude to the donor family, and the Transplant Coordinators will act as ‘go betweens’ for contact of this type.

The Transplant Coordinators may occasionally say that the donor family will not want any contact with the recipient, but are just satisfied with the knowledge that transplantation has taken place. In many cases, though, they will help to send a short letter of thanks, or a Christmas card, from the recipient to the donor family. Maintaining confidentiality is a priority – the Coordinators will never reveal the identity of the donor or recipient to the other without a long period of consultation. Only very rarely has it been positive for the transplant recipient and donor family to meet.

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The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.

NKF Controlled Document No. 261: What details are given about the kidney donor? written: 01/05/2001 last reviewed: 23/09/2016