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Thursday, 1 February, 2001, 10:27 GMT
Operations: Do parents need to know everything?
Should parents have been asked for their consent?
A children's hospital in the UK has admitted giving glands taken from operations to a pharmaceutical company in exchange for money.

The hospital, Alder Hey in Liverpool, says it made no profit from the deal, and the tissue in question, the thymus gland, is routinely taken out during heart operations and discarded.

But parent groups have reacted with fury. They feel their consent was never sought for the use of their children's organs.

Should the hospital have asked for parents' consent? Or was it right in passing on "surgical waste" to develop potentially life-saving drugs?

This debate is now closed. Read a selection of your comments below.

Your reaction

Companies can now patent DNA sequences (obtained from tissue samples) and cures based on them. I would like to know who would get the benefit from such patents. I would suggest a share of the proceeds should go to the NHS and to the patient.
J. Davies, UK

Hype over nothing - the real scandal would be not re-using waste for research. And can the NHS afford for surgeons to spend the time explaining everything in detail?
Bob, UK

All the doctors I know work tirelessly to cure ills, ease suffering and prolong life

June James, UK
I have every sympathy with the families of children at Alder Hey but I have just heard all doctors described as arrogant and incapable of communicating by an MP on BBC 1 breakfast news discussion. This makes me very angry. My husband, a consultant anaesthetist and director of an Intensive Care unit has dedicated his life to caring for the sick. In reality this has meant my bringing up our children virtually as a one-parent family while he works long hours treating the critically ill. Frequently he comes home late into the evening because he has been spending time with the relatives of his patients helping them to understand what is happening to their loved one. Regularly he is phoned during the night for advice or to find a bed for a new admission. He is not in any way unusual in his commitment.

All the doctors I know work tirelessly to cure ills, ease suffering and prolong life. Given the government, media and public willingness to slander, accuse and criticise doctors, I sometimes wonder if they deserve this level of dedication.
June James, UK

In the case of the dead children's organs being removed without parental consent I completely understand why such a fuss is being made. But in the case of the hospital exchanging a gland which is removed during surgery, and which is therefore no longer of any use to the patient, why should they not exchange it for funds? In the long run they are helping future patients. And in a health service which is stretched for funding and resources what is the problem? Maybe these things should be put in perspective, rather than being used in a witch hunt.
Stephanie, UK

Do we really want to know everything that might happen to a dead body? For example, the procedures used in post mortems and funeral parlours? Do we really want to prevent the experts from examining body tissue to discover why our loved ones were ill or died, and then using that information to prevent it happening again. And do we really want to impede medical research done on body parts of no use or value? I think the key thing here is whether the doctors treat both living and dead people with respect. It is possible to do that and study body parts for medical advances. We should stop making life any harder for these professionals
Helen, UK

Without them we'd all suffer

Randy, UK
Whatever can be done to help others should be done wherever possible. Some parents are unable to accept that their child is unable to be saved. They should be thankful for the medical staff for, at least, trying to prevent their death and doing so in the most humane way. To then attack them for using otherwise useless organs shows where their real considerations lie.

When a close relative of mine died I was only too glad to have his body used for research (i.e an autopsy was carried out). Whether this was done with my consent or not, as long as he was dead, how can any sane person object? Hospital staff are working under an increasingly intolerable burden, not only of work load but of inadequate funding and a hostile public who demand cures for everything as their right. Without them we'd all suffer. With them, we all can benefit. And yes, mistakes are occasionally made and bad decisions will be taken. Who can claim not to?
Randy, UK

As with before taking anything it is always polite to ask first. With remains or minors the parents or guardians should be asked first.
Hazel, UK

I wonder why the hospital didn't consult the parents, which on the surface of it seems the decent thing to do. Could it be that the hospital didn't think it was doing anything unusual? Maybe the practice of using human tissue in this way is more widespread than we think.
David Clarke, UK

I don't think I would object to tissue like this, that would normally be removed, being used for research but I would object strongly to not being informed. I respect the medical profession but they do not know best in this matter and should at the very least consult the parents.
Tony, Wales

Everything that doctors and surgeons do, is to help ordinary people like you and me. Keep that in mind when hurling accusations around. If these people wanted to make a few sleazy quid, they would have probably chosen a different profession - politics, perhaps?
Owen, UK

The question we need to ask is - at what point do our bodies and those of our children no longer belong to us - but to the NHS? I lost a child 10 years ago and would have been so happy to be able to donate her organs had they been usable due to the illness she had - but questions were asked and honest answers given. If this organ taking is "no big thing" then why wasn't anybody told? It seems so underhand because everybody was kept in the dark - yet, had parents been told then there would not have been this problem and confidence in the NHS would not have been shaken. The doctors should try communicating with the patients or parents of patients instead of assuming they have the unquestionable rights.
Julia, K

This country is caught in the grasp of a hangover of ridiculous Christian morals, including the principle of the inviolability of the body. There is of course a good case for having a consent based system, but the debate should not be carried out in the shadow of the outcry it unreasonably causes.
John, uk

Everything that doctors and surgeons do, is to help ordinary people like you and me. Keep that in mind when hurling accusations around. If these people wanted to make a few sleazy quid, they would have probably chosen a different profession - politics, perhaps?
Owen, UK

No one was lied to - they were simply not told the full facts

Richard West, UK
What people don't know can't hurt them, and in this case it would have been better not to let the truth out. No one was lied to - they were simply not told the full facts, and who can blame staff from keeping such sensitive information secret. The fact is that organs and tissues went to very legitimate research projects, which seems to justify the their use, just as the donation of an organ to a living person. The practice helped to gain some positive benefit out of the tragedy of a child's death, which can only be a good thing.
Richard West, UK

No matter what organs had been taken ,whether or not they were of any use,parent's consent should always be gained in such matters!
Mrs Chu, United Kingdom

They should ask for consent. I would imagine that it would usually be given if the donation was expained as being for medical research. The problem is that I, and I think others, no longer trust doctor's motives. Could they be selling these organs? Was the removal really necessary? After the mix up with organs from dead babies I think that doctors need to tread carefully.
Andy, UK

It doesn't take 5 minutes to read the NHS consent form, believe me, I've read them a few times. They are clear and to the point, in fact they have the a diamond award for good English!
Andrew, UK

When our health minister says the Alder Hey report is the most shocking thing he has ever read, and his comments reported on Holocaust Day, i just wonder where the media and government gets its sense of proportion.
Alan Wallace, UK

No wonder so many of my colleagues are on antidepressants and/or considering early retirement

Dr Stephen Hayes, UK
I am a doctor and at least 1 morning out of 3, when my radio alarm wakes me up I hear yet another story about how insensitive, uncaring, greedy etc. my profession is. No wonder so many of my colleagues are on antidepressants and/or considering early retirement.
Stephen Hayes, England

I don't think anyone really has a basis for objection to the practice of using "spare parts" for research, but who do the parts belong to. The person, the family, the hospital or the government? If the "parts" are to be donated to research then I do feel the person, or the family should at least be consulted if only to give the NHS some credibility which it rather lacks at the moment!
Daimon M. Hall, UK

Lets face it, the hospital should have asked for consent to remove the glands or any other part of the patient's body. There is no reason why they haven't done this! That is not an excuse just to say that "We have used patients organs for donations", 90% of parents/close relatives do not mind for this to be done, so why not inform them and give them a choice.
Mantas, UK

Money cannot compensate for a dead child

Mark Fullerton, UK
The sickest part of all this are the people who will sue for compensation. I bet none of the money sued for will go to help medical research. Money cannot compensate for a dead child any one who pursues this needs to look at their own ethics.
Mark Fullerton, UK

Why is there no statutory right for the patient or patient's representatives to know everything about their treatment?

Andy Millward, UK
Why is there no statutory right for the patient or patient's representatives to know everything about their treatment? As it is, if you don't ask the right question directly, you won't necessarily get the truth, the whole truth and nothing but the truth. Without an obligation to release all relevant information in a set format, doctors will resort to protecting their own backsides in the event of something going wrong, or because they have taken a decision without full consent. In this case, an unwritten hospital and even NHS policy appears to have gone uncommunicated, and probably would have remained so had the previous misdeeds by Alder Hey hospital not been uncovered.
Andy Millward, UK

Surgeons should not overlook conflict of laws. One quarter of the world is Muslim and does not permit cremation.
Dr.Isam Ghanem, Yemen

I don't think this is about parents objecting to the donation of their deceased children's organs towards research. I think we are missing the point. As it has already been established, it is of no loss to the deceased child to have the "gland" in question removed. On the other hand, it would be of great use to the laboratory that is trying to utilise it for a good cause. I think what this is really about is parents feeling violated that they are not being consulted. These are their children we are talking about. it doesn't matter whether these glands are of use to the deceased children or not and neither is this about the fact that they get $5 for the "organ". I think if parents were consulted, they would not object. It is all about the right approach and not getting things done through the back alley.
Simone, Canada

If the pathologist used any tissue from my child, then so be it

Alan Cameron, Scotland
What does this exercise by the parents actually prove or achieve? These continuing attacks on legitimate research only fill the pockets of cynical lawyers, and damage the ability of researchers to work effectively for all our good. I lost a child from cardiac problems. There was a post-mortem followed by a cremation. I asked no questions, and I was told no lies. If the pathologist used any tissue from my child, then so be it. She did not require it - she was already dead. The parents should be attacking the solicitors, for keeping the pain going.
Alan Cameron, Scotland

I carry a donor card and have done since I was of age to do so. I think that after anyone has passed on, if any part of their body could be used to save or enhance the life of another human being, surely that is a great gift and a worthy purpose?
Gillian Brown, Scotland

Parents should not be so selfish, don't they realise that research carried out on these organs could save other children's lives?

Linda, Brazil
I totally approve of withdrawing organs. Parents should not be so selfish, don't they realise that research carried out on these organs could save other children's lives? Here in Brazil, you have to state specifically that you are not a potential organ donor otherwise you are automatically consenting to having any organ removed on death, which I think is correct.
Linda, Brazil

It is not right to take a child's organs without the permission of the parent or guardian. It is not right but, I do think that more parents should allow organs to be donated for research or to other needy children.
Vikki Bethell, England

I fail to see why children are any different to any other human being. Pathologists have been removing organs and tissue and not returning them to the body of the deceased for hundreds of years. If there is an autopsy then shouldn't the organ be returned to the body, whether it is an adult or child, unless the patient or their representative said otherwise.
Stuart Robinson, England

Parents have a fundamental right to know if anything is done to their Child, regardless of the "medical Validity" of what the doctor is doing. Parents are the Guardians of their children and must be kept aware of anything that is done to them. In a day and age where life has had its value reduced almost daily someone has to make a stance for those less able to make decisions for themselves, so leave our children alone and only do that which has been agreed with the parents
Patrick McFadyen, Scot - Living in Belgium

I have two sons and both of them have been to hospital. When they were being treated we did not worry so much (although we did worry!) since we had been informed what would be going on, what risks the treatment would have and so on. I don't know how worried we would have been had we not been told anything. We are responsible for our young ones and everyone dealing with our sons should consult us. If teachers (that's what my job is) are asked about their methods and controlled, why should doctors have the right to fail to give information?
Árpád, Hungary

If surgeons took the time to explain the procedure in full, and the named nurse, who is supposed to be the patients advocate, asked the questions that parents in distress may not know to ask, then there might not be this problem
Malcolm Possell, England

I believe the true issue here is that the parents had little or no information on what was going on. I, as a parent would have no objections to such a procedure as long as I had all the facts explained to me.
Michele, Cyprus

Given the chronic shortage of organs for transplants ...I sometimes think this kind of procedure should be mandatory

Neil Saunders, Sydney, Australia
We humans have some rather odd notions about the sanctity of our bodies, based largely on medieval superstition. Given the chronic shortage of organs for transplants and the need for human tissue to replace animals wherever possible in research, I sometimes think this kind of procedure should be mandatory.
Neil Saunders, Sydney, Australia

I understand that the hospital received £5 for each of the thymus glands. Given the cost of the surgeon's (and the rest of the theatre staff's) time, it hardly seems to be an organ "trade".
Sean, UK

Yes times have changed and parents should be consulted. However to demonise the medical profession for what has been accepted practice for many years is wrong. Tonsils, adenoids, appendix have all been removed and I suspect the majority consigned to the incinerator. How much better that use is made of them.
Peter Johnston, UK

This is a completely separate issue to that of keeping dead children's organs. This is a piece of tissue, not an organ - ordinarily it would be burnt, but the hospital have found a way of putting it to good use while receiving a small (but much needed) donation to the cardiac unit. I really don't think that anyone would object to this practise if they were asked but maybe there should be some sort of consent needed.
Jenny, UK

We seem completely unable to consider the needs of other unfortunate patients who might benefit from (i) an organ donation (ii) later analysis of an organ to aid future research. What a selfish society we do seem to have become.
Mike, UK

Critics should put themselves in the place of patients needing kidneys, eye parts or whatever

Barry, Scotland
A dead child is a dead child. They don't become 'more dead' by having no thymus gland (or any other organ). Healthy organs should be removed from dead patients as a matter of course, since they will invariably benefit someone else. Critics should put themselves in the place of patients needing kidneys, eye parts or whatever.
Barry, Scotland

Surely another mountain out of a molehill situation? It is important to have perspective on this issue. Yes, it can be upsetting for parents to learn that a 'part' of their child was given away without consent but we need to be aware that it was surgical waste and not a vital organ. The medical profession deserves some credit in being able to use what was deemed waste into research with the possibility of saving other lives.
Pramala, USA

It is always tragic when a child is ill or dies and we must never do anything to make such a terrible situation worse.

Nicci, UK
While I agree that valuable research can be done using human tissue that is to be discarded, parents' feelings must always be considered when these decisions are taken. It is always tragic when a child is ill or dies and we must never do anything to make such a terrible situation worse.
Nicci, UK

How small-minded can you get to even think of denying to others the potentially life-saving benefits that can come from this constructive recycling of tissue? I am saddened that people could be so selfish.
John, USA

I really can't see what all the fuss is about. The tissue would normally have been discarded by the hospital. Why not use it for much-needed research ?
Julie, UK

The real issue is one of ownership. Who owns said 'surgical waste'?
Ian Sharp, UK

The gland is no longer needed by the patient but it can be put to good use by society. This is not a story. Come on... think about it.
Matthew Redden, UK

I would be glad if they used it instead of just burning it

Gillian, UK
Being a child who had a heart operation when they might have taken out the gland, I would be glad if they used it instead of just burning it!
Gillian, UK

I believe that as long as the hospital is ethical and does everything above board, I don't see why this is an issue. However, having said that, can we trust the hospital to be such?
Wilson, Malaysia

I was scandalised to hear the news of organ trading! This is my understanding of what I have heard. Doctors trying to help sick babies removed an apparently useless gland in order to operate more effectively. Rather than throw the tissues away, they passed them to a research company which could use the tissues in their search for ways of helping people suffering from cancer. The research company gave a donation to the hospital to cover expenses. What wicked people! To top it all, when faced with parents concerned about their real, loved, sick babies, they did not spend the time insensitively discussing every technical detail. How can we ever trust doctors again?
Libby, UK

In a time of crisis, most parents don't get the chance to read a consent form in detail

Emma, USA
Doctors need to do a better job of telling the parents of patients exactly what is going on. In a time of crisis, most parents don't get the chance to read a consent form in detail, and so may have no idea that a body part would be used for research. I bet that most wouldn't object to this practice as long as they were properly informed that it would occur. However, they deserve right to be asked.
Emma, USA

It might be worthwhile to point out with the recent hysteria and terrorism of a few deluded individuals, where are future scientific and health developments going to come from if we shouldn't use animals or discarded human tissue? What are the much-vaunted alternatives? The public want and should get more information about these issues. As the health service is so stretched that most doctors don't have time to discuss the medical issues with the patient, I don't think we can expect them to have time to discuss the details of possible uses for discarded human tissues. This is a public service our Government should provide.
Helen Spriggs, UK

How come the Minister responsible is blaming others when he is in charge?
Chris, UK

The parents should ALWAYS be kept informed about such issues

Peter, Canada
The parents should ALWAYS be kept informed about such issues. The fact that these tissues are routinely discarded is immaterial - medical staff should seek parents' or guardians' consent when removing any organ.
Peter, Canada

Let's not forget that on the consent form it does state that tissue removed may be used for research. The parents did consent even if they didn't read the small print. As for selling it, the NHS needs money and if they can raise it from pharmaceutical companies who are willing to pay for what is technically waste - go for it!
Dan, UK

Never mind whether it should have asked for their consent, why did it NOT ask for their consent? It should have done this purely out of courtesy even if there are no medical or ethical guidelines to enforce such a procedure.
Alex Banks, Wales (Living in Sweden)

I really don't see what the fuss is about

Jill, UK
Why should anyone object to a hospital in the poor cash-starved NHS making some much-needed funds by selling something which would have otherwise been incinerated? I really don't see what the fuss is about. Some emotionally vulnerable and ill-informed people seem to have been whipped up to a storm of fury by the media looking for yet another anti-NHS story.
Jill, UK

Let's hope they don't start removing perfectly healthy organs unnecessarily, just so they can sell them...
Henry Case, UK

This is simply ludicrous. The tissue was waste tissue. It was being removed anyway. No one profited. And hey, some good use came of it in terms of future treatment for others. I think we should congratulate Alder Hey on their efforts and ingenuity. Alan Milburn should take a few deep breathes and calm down as there is simply no point in stoking up an outrage over this.
Helen, UK

Is the argument regarding the use of the tissue or the fact that the hospital received donations? As the tissue was normally discarded, at a cost to the hospital, I can see no problem with using it for research.
Caron, England

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