From nucleus - winter 2004 - News Review [pp6-10]
The Human Fertilisation and Embryology Authority (HFEA) has given a research group in Newcastle permission to conduct therapeutic cloning of embryos. The aim is to generate embryonic stem cell lines for future therapies in diseases such as Parkinson’s, Alzheimer’s and diabetes.
Professor Alison Murdoch of the International Centre for Life, leading the project, describes this new field as ‘immensely exciting’ and she is keen to take the work done so far by her group ‘to a new level’. She states that she has had ‘overwhelming support from senior scientists and clinicians’, as well as patients who could benefit from this research.
Many scientists have echoed her view about the potential of this research. The head of the HFEA, Suzi Leather, called the work being done by the Newcastle group both important and a responsible use of the technology available.
Members of the ProLife Party in the UK have denounced this latest development, and are considering mounting a legal challenge against the HFEA’s decision, whilst other charities have questioned whether it is appropriate for unelected quangos in government to be making such decisions. The chairman of the charity Life, Professor Jack Scarisbrick, has responded by saying that ‘this is a deplorable further step down the slippery slope’.
The creator of Dolly the sheep, Professor Ian Wilmut, has applied to the HFEA for a similar licence in order to study Motor Neurone Disease and develop potential treatments. Despite this research going ahead, reproductive cloning still remains illegal in the UK. (bbc.co.uk 2004; 11 August, Guardian 2004; 11 August, Scotsman 2004; 27 September)
The Human Fertilisation and Embryology Authority (HFEA) has decided to allow another couple to go ahead with a controversial technique to select a ‘saviour sibling’ for their sick child. This is the first decision since the rules were changed in July 2004 to allow for such cases.
Joe and Julie Fletcher’s two year old son Joshua has Diamond Blackfan Anaemia (DBA), a potentially fatal blood disorder. Using in vitro fertilisation (IVF) procedures, pre-implantation genetic diagnosis will be used to HLA-type the couples’ embryos. Only those that are a match for Joshua will be implanted. If a successful pregnancy results, stem cells from the cord blood would be harvested and transferred into Joshua. Hopefully, they would settle in the bone marrow and produce healthy red blood cells, resulting in a permanent cure of his anaemia.
Raj and Shahana Hashmi were the first couple granted permission to use this technique to create a match for their son Zain, who has b-thalassaemia. Having endured six IVF cycles over the last two years they have now decided to stop treatment. The couple’s doctors are reluctant to continue because of Shahana’s age (40) and the stressful effects of the treatment. They have two frozen embryos remaining that they may still decide to use.
Michelle and Jayson Whitaker, who also have a son with DBA, applied to the HFEA in August 2002 for permission to use the technique, but were refused. They travelled to Chicago for treatment instead and have had a healthy baby boy who is a match for his older brother, Charlie. The transplant went ahead in August this year and appears to have been successful. Doctors cannot declare Charlie cured until a year after the operation though as there is still a risk of late graft failure.
Meanwhile, the Human Genetics Commission has launched a consultation on so-called ‘designer babies’. Choosing the future: genetics and reproductive decision making asks questions about developments in pre-implantation genetic testing practices. The closing date for responses is 15 October 2004. (bbc.co.uk 2004; 16 July, 21 July, 27 July, 6 September, www.hgc.gov.uk)
The case of a woman who had three in vitro fertilised embryos implanted in her womb at once and then had to abort one of them because of health risks, has sparked debate in Italy about the country’s new fertility laws. The 26 year old woman from Sicily had the fetal reduction procedure after a court ruled that if the eleven week triplet pregnancy continued, her life would be at risk.
The new law came into effect in March, following many years of discussion in the predominantly Catholic country. Prior to this, there was no legislation because of a lack of consensus about the status of the embryo, leading to widespread abuse of the country’s facilities. The Medically Assisted Reproduction Law aims to give the embryo and the mother equal rights, but only stable, heterosexual couples of child bearing age can seek infertility treatment. They can create only three embryos in one cycle of treatment, none of these can be genetically tested, and all three must be implanted at once.
Abortion, however, is legal in Italy up to 90 days into the pregnancy and later if there are health risks. This is the second such case following the introduction of the new legislation: in June this year a court ruled that a Sardinian woman carrying twins should have one removed as it had the genetic disorder thalassaemia, which is common in Sardinia.
Reproductive medicine specialists and women’s rights groups in Europe have both criticised the legislation, which is supported by the Catholic Church. Dr Giovanni Monni, who carried out the two abortion procedures and is a board member of the European Association of Perinatal Medicine said: ‘These cases show what is wrong with this law. It was created to protect the embryo, but what it does is force the woman to choose abortion.’ The law is now being reviewed by a parliamentary committee. (BMJ 2004; 329:71)
A Belgian woman left infertile after chemotherapy has given birth to a healthy baby girl after a revolutionary treatment that will offer hope to hundreds of women in similar situations.
Ouarda Touirat was diagnosed with Hodgkin’s Lymphoma seven years ago, and told that there was a strong chance chemotherapy would induce an early menopause, leaving her infertile. Trying a new technique, doctors removed a small section of her ovarian tissue. The tissue was cut up then stored in liquid nitrogen at a temperature of almost –200OC.
When Mrs Touirat was declared all clear from cancer in April 2003, doctors discovered that the menopause had set in. The stored ovarian tissue was re-implanted into her body at the end of the fallopian tubes. It began to produce eggs and hormones, and four months later she was menstruating and ovulating normally. In January this year she found she was pregnant - 8lb baby Tamara was born on 23 September.
A number of women around the world have frozen ovarian tissue in the hope that it will enable them to conceive naturally if chemotherapy leaves them infertile. The Cliniques Universitaires Saint-Luc, where Mrs Touirat was treated, has frozen ovarian tissue from 146 other cancer patients. Professor Jacques Donnez, who led the Belgian research has described the technique as a new medical obligation: ‘Every woman who is going to receive chemotherapy for cancer should be offered different options for fertility preservation.’
Speaking at a press conference with her husband, Mrs Touirat said, ‘It was a dream I had always hoped for…This is a miracle for us the parents, and for the hospital team.’ (bbc.co.uk 2004; 24 September, Scotsman 2004; 25 September)
A High Court judge has declared that the General Medical Council’s (GMC) guidelines on withdrawing food and fluids are unlawful.
Leslie Burke, who sought a judicial review of the guidelines, is a 44 year old disability rights adviser who suffers from congenital cerebellar ataxia. He was afraid that doctors would remove artificial nutrition and hydration (ANH) against his wishes once he loses his capacity to speak.
The 2002 guidelines Witholding and Withdrawing Life-Prolonging Treatments: Good Practice in Decision Making enable doctors to remove ANH from a patient who has become permanently incompetent because of a severe medical condition with a poor prognosis. Doctors must judge whether ANH is more of a burden than a benefit to the patient and, in consultation with the patient’s relatives, take into account what the patient would have wanted.
Mr Burke argued that the guidance could breach his ‘right to life’ under the European Convention on Human Rights and result in inhumane and degrading treatment. Mr Justice Munby ruled that while the guidelines were generally very compelling, he took issue with their interpretation of the law: ‘The legal issues are of the utmost significance potentially to all of us…the claimant has in principle established his right to relief.’
After the judgment Mr Burke said, ‘There have been times when I have found this quite painful…but it has all been worthwhile. It seems like a great weight lifted off my shoulders.’
The GMC has sought leave to appeal against the decision. Sharon Burton, their senior policy advisor, commented that, although they were glad for confirmation that Mr Burke’s wishes should be followed, ‘the case raises important points of principle and there are some areas where we consider further clarification may be needed.’
Two pieces of legislation currently before Parliament could also impact end of life decisions. The Mental Capacity Bill, published in June this year, is currently progressing through the House of Commons. It seeks to define how patients lacking capacity should be treated and sets the limits for advance directives. In the House of Lords, the Assisted Dying for the Terminally Ill Bill is currently under scrutiny by a Select Committee. It seeks to legalise assisted dying for terminally ill patients with ‘unbearable suffering’. Concerned parties, including CMF, have raised a number of reservations about both bills.
At the BMA annual representative meeting in July this year a proposal that the wishes of patients who have lost mental capacity but previously indicated their desire to receive ANH should be respected, was endorsed by 59 votes to 56. (BMJ 2004;329:72, bbc.co.uk 2004; 30 July, timesonline.co.uk 2004; 30 July, telegraph.co.uk 2004; 31 July)
The medical profession’s power and influence is under threat because of the rising number of female doctors, according to the President of the Royal College of Physicians, Professor Carol Black.
In an interview with the Independent, Professor Black stated her belief that female dominated professions are weaker. ‘Years ago, teaching was a male-dominated profession - and look what happened to teaching. I don’t think they feel they are a powerful profession any more. Look at nursing, too,’ she said.
She also cited Russia, where females dominate medicine, as an example: ‘They are paid less and they are almost ignored by government. They have lost influence as a body that had competency, skills and a professional ethic…They have become just another part of the workforce. It is a case of downgrading professionalism.’
Professor Black hopes to correct the gender imbalance, and see equal numbers of male and female doctors. She feels that, although women often achieve equal or better results than men, they often sacrifice their career for family commitments. ‘What worries me is who is going to be the professor of cardiology in the future? Where are we going to find the leaders of British medicine in 20 years time?’ she said. Black is pushing for more child support and flexibility of work to allow female doctors to rise up the ranks of the profession. ‘If you can’t make it possible for women to participate in everything - doing research, attending committees, influencing the Department of Health - the profession will lose its influence,’ she said.
Her comments have sparked criticism from a number of groups. John Bangs of the National Union of Teachers commented, ‘I would by no means agree that teaching views itself as a less powerful profession, and I find that a very concerning view.’ (bbc.co.uk 2004; 2 August, Independent 2004; 2 August)
A professor at the University of Minnesota has added fuel to the scandal about Abu-Ghraib prison in Iraq by highlighting evidence of United States medical personnel complying with demands for prisoners to be tortured.
Steven Miles, writing a damning report in the medical journal the Lancet, stated that there are reliably confirmed reports about inmates being subject to burns, shocks, asphyxiation and other physical methods of interrogation. He goes on to say that even US government documents have proved that medical care of the detainees was insufficient in many cases. His article states that failure to report injuries or deaths properly occurred, as well as doctors abetting abusive guards.
The Bush administration has consistently adopted a policy that confers no Geneva Convention protection to al-Qaeda or Taliban prisoners, as the groups were not national signatories to these principles of human rights. However it maintains that its armed forces will uphold the principles of Geneva wherever possible.
The US Pentagon has flatly rejected any suggestions of inappropriate behaviour by any of the medical staff at Abu Ghraib, whilst slamming Miles’ report for being ‘inaccurate in how medical personnel performed their duties and upheld their obligations’. In a separate editorial in the same issue of the Lancet, the journal urges any doctors who have been involved in such incidents to come clean, and to give a complete account of events at military compounds where terrorist prisoners are being held. (Lancet 2004;364:9435, bbc.co.uk 2004; 20 August)
Six dogs have been trained to discriminate between urine from patients with bladder cancer and urine from both patients with other diseases and healthy controls. In the ‘proof of principle’ study, the dogs were trained for seven months and tested using a variety of urine samples. They successfully detected the urine of patients with cancer 41% of the time; the rate expected by chance alone was 14%. After all six dogs selected the urine of a ‘bladder cancer free’ sample, the volunteer’s doctor decided to carry out further investigations. These revealed a tumour in the patient’s right kidney which had not been picked up on the usual medical tests. Spaniels seem to have the best nose for this specialised work, although researchers are keeping an open mind about the nasal abilities of other breeds. (BMJ 2004;329:712, bbc.co.uk 2004; 23 September)