Introduction:

SIN and others were taken by surprise, to hear on the "Richard & Judy Show" on 19th March, 2002, that Mr. Tom Watson MP was introducing a Private Member's Bill into the House of Commons for its first reading on 20th. March 2002. This Bill was an amendment to the Human Tissue Act 1961, and had the full backing of the BMA, ( British Medical Association) the doctors Trade Union. The Bill was called: " The Organ Donation (Presumed Consent and Safeguards) " Bill.

 The Bill reads: " That leave be given to bring in a Bill to provide for the removal of organs for transplantation purposes after death has been confirmed in a person aged 16 years or over, except where a potential donor previously registered an objection or where a close relative objects; and for connected purposes."

Concerns over the implications of such an amendment prompted SIN to write the following short Article.:

On  11th February 1999, a solicitor advising the families involved in the Bristol Children's Heart Action Group revealed that the removal and retention of organs and tissues at post mortem examinations without expressed consent, was standard practice in the NHS. At the same time. former Health Secretary, Frank Dobson announced that the Inquiry into children's heart operations at the Bristol Royal Infirmary ( BRI Inquiry) would now also investigate the reports of the organ removal¹

Few in the country can be unaware of the routine removal of organs from dead children, which was initially brought to light in September 1999, during the course of the BRI Inquiry; and subsequently and more publicly though the horrors uncovered by the Inquiry into post mortem practices at the Royal Liverpool Children's Hospital² ( Alder Hey). By the time these revelations were made known to the public, it was already well known behind the scenes at bristol, in fact as early as April 1996³ that retention of body parts and tissues without parental consent had occurred.

However, more than 20 years before the scale of this national scandal became common knowledge, Derek and Joan Bye knew all too well about removal of organs without parental consent. Since 1978 they had made countless people aware that following the iatrogenic  (medically induced) death of their 12 year old only daughter, Helenor, they believed that her body had been returned minus her brain, liver and kidneys. In October 2001, 23 years later, they received written confirmation that not only those, but every organ in their child's body and other parts besides had been removed at the time of death and that some tissues had been incinerated in 1998 ( 20 years after Helenor's death). If someone had listened to and acted on he well founded fears of Joan and Derek years beforehand, many families in this country could have been spared the indelible mental scars inflicted upon them by this nation-wide affront to public decency.  (Contact Joan and Derek : 0120 2248 036)

¹BBC News. Thursday, February 11, 1999
²The Royal Liverpool Children's Inquiry, 30 January 2001
³  Sarah Boseley, The Guardian. Thursday, 11 May 2000

On October 6th 1999, the Secretary of State for Health, Alan Milburn, instructed the Chief Medical Officer ( CMO) Prof. Liam Donaldson, to carry out an investigation into the removal and retention of organs and tissue at post mortem examination. The CMO held a Summit on organ retention on 11th January 2001 to hear from all  affected parties. During the conference, Mrs Elaine Isaacs, whose husband died 15 years ago in the community and was buried without his brain, put the record straight by pointing out that retaining human body parts at the time of death without consent was not just confined to babies and small children who had died in hospital. In fact most the organs⁴ stockpiled in hospitals and universities throughout the country actually belonged to adults. Mrs Isaacs recently discovered in the course of her 15year campaign for the rights of patients with mental health problems and their families, that her husband's brain had been incinerated. The Secretary of State for Health instigated an Inquiry into events surrounding the death of Mrs Isaac's husband, which is currently in progress, headed by HM Inspector of Anatomy. ( Contact Elaine: 00771 0697 830) Also read Elaine's own account on this website under "Your Comments ": Elaine's "Woman's Hour Interview : My 14year battle with the D.o.H".

The law applying to the removal of tissue and/or organs after death is the Human Tissue Act 1961. The Human Tissue Act 1961 deals not only with the issue of the removal, retention and use of organs and tissue at the hospital post mortem examinations for medical and research purposes but also in respect of organs for transplantation. This Law as it stands has meant that "....the English courts have taken the view that the dead body of a human being cannot be the subject of property."⁵In other words, the law does not account for ownership of body at the time of death.

⁴ D.o.H  2001. Report of Census of Organs and Tissues retained by Pathologist Services in England.
⁵ Skegg P.D.G. ( 1976) The Interpretation of the Human Tissue Act 1961. Med.Sci.Law Vol.16,No.3
 

At the British Medical Association ( BMA) Annual Conference in July 1999, doctors voted for PRESUMED CONSENT  in respect of "harvesting" organs for transplantation to be made law. Members voted to scrap the present 'opt-in' system ( i.e. donor cards) for an 'opt-out' system where the onus would be on those who do not wish their organs to be used after  their death for transplantation, to register their objections.⁶

Clearly, the reputation of the profession had been severely shaken and. in what appeared like efforts to salvage the professional reputations of their members, the BMA ( doctors' trade union) tried sending the public on a guilt trip by launching a campaign to raise awareness about a shortage of organs for transplantation. During this campaign it was even claimed by some doctors that the shortage of organs for transplantation had been caused by bad publicity surrounding events at Alder Hey. However the chronic shortage of organs had been the case long before the subject of organ retention was public knowledge. This fact was confirmed by the BBC in June 2000, where it was acknowledged that a report published by the BMA to coincide with the launch of the campaign recorded that: 'Between 1995 and 1999, 1000 patients died in the UK whilst waiting for a heart,  heart and lung or liver transplants.' At a summit on 27th February 2001, held specially to address the shortage of organs for transplantation, Mr Alan Milburn reiterated that organ donation had NOT suffered adversely because of the organ retention scandal.

Only weeks after this summit, on 16th March 2001, former Tory Health Secretary for State, Kenneth Clarke MP, with the full backing of the BMA⁷, introduced a Bill calling for amendments to the wording of the Human Tissue Act. One of the main changes the Bill called for was for the present wording "person lawfully in possession of his body" to  be substituted by the words " Health Authority or Trust". Such wording he believed was necessary to protect doctors from any threat of litigation when removing organs from cadavers for transplantation. The government did not support the Bill.

⁶BMA Conference July 1999,  Belfast
⁷House of Commons Hansard Debate for 16 march2001: Column 1336
 
A further very recent attempt was made for changes to the Human Tissue Act via the emotive issue of the removal of organs for transplantation. On 20th March 2002, Tom Watson MP, again with BMA backing, asked that leave be given for him to bring in a Bill ' to provide for the removal of organs for transplantation..... and for connected purposes'.  (Emphasis added). His Bill - " Organ Donation ( Presumed Consent and Safeguards) " - is due to be read for a second time on 19th April. If Mr Watson's Bill were to become law, presumed consent would work on the principle that unless objections have been registered before death,  the organs and body parts of everyone over the age of 16 will be removed for transplantation ...and for connected purposes.

When Kenneth Clarke's Bill received the thumbs down from the government, Junior Health Minister Gisela Stuart actually gave arguments against a system of presumed consent. She pointed out that "....from looking at what is effective abroad, that altering the legislative framework will not solve the shortage of organs.... There is no evidence in other areas of the world that such a change has been successful....In France, where the 'opt-out' system was tried, there was a huge public backlash. The right way forward is to continue to seek informed consent from the closest to the deceased....Permission for donation for transplantation is always sought explicitly form those close to the potential donor. They are asked to agree that organs may be used for medical or scientific research if they prove unsuitable for  transplantation."⁸

⁸House of Commons Hansard Debates for 16 March 2001: Column 1353

Post mortem practices for the last fifty years appear to suggest that presumed consent has always been the norm for the medical profession. After death, the human body, under the law as its stands today belongs to no one i.e. is is not classed as 'property', therefore what presumed consent means in reality is that the body will legally be the property of the medical profession. The mind boggles at the implications . Here are some:

The concept of presumed consent, if enshrined in statute would make everyone's body parts up for grabs after death, not only for transplantation but for 'connected purposes', unless they register their objections beforehand.

Any harvested body parts not suitable for transplantation could be used for 'connected purposes' without permission or even knowledge that this had been the case

Presumed consent in statute is about ownership of body parts after death and would give doctors the right to claim organs/body parts/tissue from all who are not on the register

If such a bill became law, body parts after death would effectively become the property of  Trusts and Health Authorities and would give doctors NOT patients/their relatives the right to decide the fate of their body parts

As property of Trusts and Health Authorities, any 'spare' body  parts unsuitable for transplantation after death, would become a resource, to be controlled and commercialised as managers see fit.

Acts of parliament do not take into account individual religious or cultural practices

Such legislation would serve to perpetuate the myth that 'the doctor knows best'

Presumed consent in essence would dictate to individuals what their obligations are to society and their fellow man

Donors should be willing to give: giving is a personal decision. Those choosing to 'opt-out', for whatever reasons, should not be enforced by law to make their wishes known.

Public awareness about the whole concept of transplants must be raise, showing the failures as well as the success stories.

Living donors: both patients end up in ICU after liver transplants, poses immediate and long term risks to the donor.

Organs ( heart. lungs, kidneys, pancreas and small intestines) cannot be taken from a dead person. They can only be taken when the heart is still beating i.e. when the donor is 'brain dead' on a life support machine. Therefore very few organs are actually suitable for transplantation.

Tissues ( skin, bone, corneas, heart valves) can be recovered up to 24 hours after the heart has stopped.

It is obvious that the Human Tissue Act is outdated. However, it is also obvious that the language used in any new legislation must be crystal clear and is not ambiguous in anyway. The voices of those directly affected by the exposure of past practices must have the biggest say in any new legislation - not the BMA for whatever reasons. " Ownership" of the body must lie fairly and squarely with the deceased person's family - after all it will be the family who will have to live with whatever decision is made about the fate of their relative's body after death. Until now 'presumed consent' seems to have been the order of the day anyway and served no purpose other than keeping doctors firmly in control of the doctor/patient relationship. To ensure a tragedy of this nature can never occur again Mr. Watson's policy should be to advocate for  informed consent.  

At SIN's demonstration on Monday 15th April, the above article was distributed in the form of a leaflet to the D.o.H.., Richmond House  and to the House of Commons as well as to the public at large. We were very pleased to hear, on Friday, 19th April,  that Mr Tom Watson's Private Member's Bill  ' To provide for the removal of organs for transplantation ...and for connected purposes'  failed to get its second reading and was thrown out of the Commons. We should like to hope that the above leaflet played some part in influencing opinion.

SIN advocates full, informed consent. SIN also advocates that the medical profession  displays all due respect for  the sanctity of the human body -  not only during life but that this respect continues after death. Every human being is a miracle of creation and every organ or tissue freely donated by the person or relative should be appreciated as the precious gift that in reality it is.
 
 

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