Bereaved families are to be told that organs were removed from loved ones without consent after a huge blunder affecting the UK donor register.
Around 800,000 people have had their wishes about the use of their organs wrongly recorded due to an error, it was revealed on Saturday.
An investigation found that 45 individuals for whom false data were stored have since died. The NHS is about to contact approximately 20 families who allowed organs to be taken after being misinformed about what consent had previously been given.
Joyce Robins of pressure group Patient Concern told the Sunday Telegraph: "This Government has got an absolutely dreadful record when it comes to data, but it is absolutely horrific that such sensitive details were handled in such a careless way."
Donors can give permission for any of their organs to be taken, or provide more specific agreements. Many donors have strong views about what can be taken. Often consent is not given for eyes to be removed, or bodies to be used in medical research.
But the distinctions were accidentally deleted in 1999, when details held by the Driver and Vehicle Licensing Agency - which includes a request for consent in applications for a driving licence - was transferred to the organ registry.
The mistake came to light last year when NHS Blood and Transplant wrote letters to new donors thanking them for joining the register, and outlining what they had agreed to donate. Respondents wrote back complaining that the information was wrong.
After detecting the error, NHS Blood and Transplant, which runs the organ donation register, was able to correct 400,000 of the flawed records. But hundreds of thousands more people are due to be contacted shortly and asked to confirm what consent has been given.
Until fresh consent is obtained, organs will not be taken from any of those people in the event of death.It is illegal to remove organs without prior consent from the person who died, or their next of kin. In the cases where errors were made, families are believed to have been asked for permission, but their decisions were based on misinformation about the wishes of their relatives.
A spokeswoman for NHS Blood and Transplant said: "We are aware of issues with the records with a small proportion of the people who signed up to the NHS organ donor register. We are taking it very seriously and are urgently investigating the situation. Our priority is in ensuring that the families of those who may have been affected are contacted."