Feeding tube withdrawn

Terri Schiavo, a woman who has been in a persistent vegetative state for 15 years, has had her feeding tube removed following a bitter seven year court battle in the United States between her husband and her parents.

Michael Schiavo, Terri’s husband, wanted the feeding tube removed. He has legal guardianship and claims that she has been brain dead for twelve years. Mrs Schiavo’s parents, Bob and Mary Schindler, have attacked the state judges’ decision to refuse to allow her nutrition, and claim that she is still responding. They have pleaded with Mr Schiavo to give up guardianship of their daughter.

While a state ruling in Florida allowed the feeding tube to be removed, President Bush cut short his holiday to sign a new law on 20 March after it had passed through Congress, allowing a federal court review of the case. However, the federal judges also threw out the Schindler’s appeal. James Whittemore, one of three judges on the federal court appeal panel, said that the Schindler’s lawyer had ‘not established a substantial likelihood of the success of the merits of their case’. They are expected to take the case to the US Supreme Court.

Mrs Schiavo has had her feeding tube removed twice before and twice put back, once on the grounds of medical evidence and most recently in November 2002, when Jeb Bush, the governor of Florida, enacted a state law to protect her right to live. This action was later declared to be unconstitutional. The case has been a highly charged affair between the pro-life and right-to-die groups in the US. In Europe, President Bush has been widely criticised in European newspapers for his intervention, but Italy, a largely Catholic country, has supported his move. Pro-life groups, including some Christian organisations have set up protests outside the hospice where Terri lives and her husband’s residence.

Doctors estimate that without nutrition, Terri Schiavo will be dead from dehydration within two weeks. (Guardian 2005; 21 March, 23 March, Reuters 2005; 22 March)

No redress for late abortion

Criminal charges will not be pressed on two doctors involved in aborting a fetus with a cleft lip and palate after the legal limit of 24 weeks. Rev Joanna Jepson, who had surgery for a jaw deformity and has a disabled brother, instigated a judicial review leading to the reopening of the case. Her lawyers argued a cleft lip and palate did not constitute a ‘serious handicap’ according to the 1967 Abortion Act. But the Crown Prosecution Service was satisfied the doctors had acted in good faith.

The abortion, involving a Hertfordshire woman, took place in December 2001. Rev Jepson, curate of St Michael’s Church in Chester, argued that this was a case of unlawful killing.

Paul Tully, general secretary of the Society for the Protection of Unborn Children, said ‘clearly the baby who died in this case has suffered an injustice and it appears this will not be redressed. We suggest the Human Rights Act might be the appropriate vehicle in this case, because this unborn child was clearly discriminated against.’

The Abortion Rights group said, ‘Cleft palate can sometimes lead to severe disability. We believe those were the grounds on which the doctors agreed to perform the operation. We saw the case as a hook for the anti-abortion lobby to get doctors prosecuted for doing their job.’ (bbc.co.uk 2005; 16 March)

Abortion – an election issue?

Abortion may be debated in a UK general election for the first time following comments by politicians and Catholic leaders. The three main party leaders were quoted in Cosmopolitan magazine on the issue. Abortion could play a major role in the upcoming election campaign as it did in the 2004 US presidential elections.

Conservative leader Michael Howard said current rules are ‘tantamount to abortion on demand’ and supports limiting social abortions to 20 weeks as opposed to the current 24 weeks. Prime Minister Tony Blair said the situation will remain under review but he has no plans to change current laws. Liberal Democrat leader Charles Kennedy said that medical advances meant he was unsure on how he would vote now. Even if the limit were decreased to 20 weeks pro-life groups worry that this could go along with making access to early abortions much easier.

The Roman Catholic Archbishop of Westminster, Cardinal Cormac Murphy O’Connor lent strength to Mr Howard’s view: ‘The policy supported by Mr Howard is one that we would commend, on the way to a full abandonment of abortion.’ He added that the UK’s six million Catholics may no longer naturally support Labour. This could worry Tony Blair who attends Catholic services and whose family is Catholic.

Abortion may not become an election issue as there are disagreements within each party. Mr Howard made it clear that his views were personal and the three major parties say that there is no one party policy, but the issue is one for each Member of Parliament’s conscience. Although individuals may be questioned regarding their views, it is unlikely that the issue will become a high profile partisan issue like immigration or the National Health Service. (bbc.co.uk 2005; 15 March)

Lords hear saviour sibling challenge

The UK House of Lords is being asked to decide whether the decision of the Human Fertilisation and Embryology Authority (HFEA) to allow the Hashmi family to try to create a ‘saviour sibling’ was wrong. If Quintavalle (On behalf of Comment on Reproductive Ethics) v HFEA is successful, it will put an end to the use of tissue typing to make babies who are genetically matched to sick siblings.

The Hashmis were given permission by the HFEA in February 2002 to use pre-implantation genetic diagnosis (PGD) and tissue typing in conjunction with IVF, in order to have a child that would be a genetic match for their son, Zain, who has -thalassemia. Cells taken from the umbilical cord of the ‘saviour sibling’ would then have been transplanted into Zain in the hope that they would grow and replace his own faulty bone marrow.

CORE launched a judicial review action against the HFEA’s decision in 2002. The High Court ruled that the HFEA had acted outside of its remit and that the treatment could not go ahead. In April 2003 the Court of Appeal overturned that decision and the Hashmis pursued treatment. Shahana Hashmi has since miscarried a number of times.

Representing CORE, Lord Brennan QC argued that the treatment did not fall under the HFE Act 1990 as it was not PGD to help a woman have a child, but rather for the benefit of a third party – in this case Zain. ‘We are actually dealing with an embryo being specifically created to act as a donor of tissue for another person’, he said.

The couple have indicated that they will travel abroad for treatment if the Lords rule against them. They may also take their case to the European Court of Human Rights.

Meanwhile, it has emerged that the HFEA has changed its mind on bone marrow donations from saviour siblings. Previously, a strict ban meant only umbilical cord cells could used. However, it has now decided that the interests of a saviour sibling, once born, could be served by donating bone marrow to a sibling that would otherwise die. Bone marrow harvesting is an invasive, painful and potentially risky procedure that requires general anaesthetic. (Observer 2005; 6 March, bbc.co.uk 2005; 7 March, BioNews 2005; 7 March, Times 2005; 7 March)

US couple: they destroyed our embryo

A couple in the United States are suing their IVF providers for accidentally discarding one of their nine embryos two years ago, which had been stored at a clinic in Chicago.

The Centre for Human Reproduction in Chicago apologised for the error in 2002 and offered a free cycle of IVF. The couple, Alison Miller and Todd Parrish, are pursuing damages on the grounds of ‘wrongful death’. Judge Jeffrey Lawrence in Illinois ruled that they may contest for a claim, based on the state’s Wrongful Death Act. Their appeal had twice been previously rejected.

Some legal experts have been disappointed at Lawrence’s ruling on the case, citing that the spirit of the law had been misrepresented. The executive director of the American Civil Liberties Union of Illinois, Colleen Connell, said that abortion legislation meant that the definition of life from conception was ‘unconstitutional and unenforceable’. She was concerned that if damages were awarded to the couple, this would have implications for embryonic stem cell research and could be a watershed for future lawsuits in similar cases.

Pro-life lawyers are hopeful that on grounds of existing state laws in Illinois, the couple have a ‘very good chance’ of overturning a previous ruling that threw out Alison Miller’s case. (www.parliamentaryprolife.org.uk 2005; 8 February)

UN human cloning ban

The United Nations has formally adopted an international declaration on human cloning. The UN Declaration on Human Cloning calls for countries ‘to prohibit all forms of human cloning inasmuch as they are incompatible with human dignity and the protection of human life.’

The declaration was generated by the UN Sixth Committee, which agrees legal issues. In February they voted 71 in favour, 35 against, with 43 abstentions. The declaration then passed to the UN General Assembly who voted on 8 March - the 191 nations divided 84 in favour to 34 against, with 37 abstentions.

The declaration was developed after three years of debate in which two proposals were presented to the Sixth Committee. The Costa Rican proposal, supported by the US and another 64 countries, was introduced in 2003, recommending a complete ban on both reproductive and therapeutic cloning. The Belgians introduced a second ‘compromise’ proposal that recommended a complete ban on reproductive cloning, leaving therapeutic cloning to the laws of individual member states.

The UN abandoned its attempts to agree upon a cloning ban in November 2004, deciding instead to draw up a non-binding declaration. This means that it encourages rather than requires countries to pass laws conforming to its position. Furthermore, some argue the language is ambiguous enough to please both sides.

Some have commented that the non-binding nature of the declaration also allows for reproductive cloning. Professor Richard Gardner, chairman of the working group on stem cell research and cloning at the Royal Society commented, ‘The voting of 71 to 35, with 43 abstentions, shows a divided UN and fails to send out a clear message to maverick scientists that reproductive cloning is unacceptable.’

The UK government, which voted against the proposal, has categorically stated their intention to ignore the declaration. Health Secretary John Reid said the UK stem cell research industry remained ‘open for business’, commenting: ‘It is a shame that the UN could not agree to a legally-binding worldwide ban on reproductive cloning, simply because a small group of countries intransigently refused to allow individual countries to make up their own minds on therapeutic cloning.’ Reproductive cloning in the UK is outlawed by the Human Reproductive Cloning Act 2001. (BMJ 2005;330:496, Hansard 2005; 7 March, bbc.co.uk 2005; 9 March, BioNews 2005; 10 March)

HFEA grant second cloning licence

The Human Fertilisation and Embryology Authority (HFEA) has granted a licence to the Roslin Institute in Edinburgh to create cloned embryos for research into Motor Neurone Disease (MND). This is despite an impending judicial review of their decision last August to grant a cloning licence to Newcastle’s International Centre for Life.

Professor Ian Wilmut (the scientist who cloned Dolly the sheep) and his team plan to clone ‘MND embryos’ from patients who have the condition. These embryos will then be studied in an attempt to gain greater understanding of the disease – primarily to discover why the nerve cells of MND sufferers die off. The cloned embryonic cells may also be used to test new MND drugs. The cells will not be used to correct the disease, as other cloning research aims to do.

The Chief Executive of the HFEA, Angela McNab, commented, ‘The HFEA’s role is to ensure research on human embryos is only carried out when it is viewed as necessary… MND is a serious congenital condition...’

The HFEA’s decision to license the Newcastle research is being challenged through the courts. Peng Voong, a policy analyst for the Lawyers’ Christian Fellowship, argues that the HFEA acted unlawfully in granting the licence. David Foster, Mr Voong’s solicitor, commented, ‘It doesn’t matter what side of the argument you are on, the HFEA should have transparent procedures.’ The judicial review applies only to the Newcastle licence but would have implications for other decisions, if successful.

MND is a degenerative disease of the motor neurone cells that affects about 5,000 people in the UK. 50% of sufferers die within 14 months of diagnosis.

Professor Wilmut has responded to criticisms by stressing that he has no intention of bringing cloned embryos to term – they will be destroyed after experimentation. (Nucleus 2004; October:6, bbc.co.uk 2005; 8 February, Scotsman 2005; 8 February, HFEA press release 2005; 9 February)

WHO tobacco control treaty

A global treaty aiming to curb smoking came into force on 27 February. Under the conditions of the agreement, countries that have signed up must ban tobacco advertising, sponsorship and promotion within five years, and provide strong health warnings on tobacco packets within three.

The WHO treaty is formally known as the Framework Convention on Tobacco Control, and further recommends tax increases on tobacco products, as well as cracking down on tobacco smuggling and reducing passive smoking. Lee Jong-Wook, the WHO director general, applauded its enactment: ‘Its entry into force is a demonstration of governments’ commitment to reduce death and illness from tobacco use.’

Currently, 167 countries have signed up, although only 57 have ratified it. Notably, some of the main tobacco growers such as India, Japan, Pakistan, Thailand and Turkey, as well as the cigarette manufacturing states (Britain, Germany and the Netherlands) are among them. Tobacco firms are lobbying intensively against the treaty, including those in the United States; the US is a signatory to the accord, but has not passed it into law. ‘The tobacco industry wants to be free to sell and market their deadly products in such a way that they have more and more profits. This is the only language the tobacco industry knows’, Vera Luiza da Costa e Silva, director of the WHO’s Tobacco Free Initiative, told journalists.

Smoking is estimated to kill 4.9 million people a year, and deaths could double by the year 2020, with 70% of these in developing countries. (Reuters 2005; 27 February, bbc.co.uk 2005; 27 February)

Latest HIV news

A paper published in the Lancet reviews a case of a homosexual man in his 40s who developed full-blown AIDS just months after he contracted a multi-resistant strain of HIV.

The patient is reported to have had unprotected sex with a large number of partners, and treatment from three of the four main classes of drug have been ineffective. The man also admitted to using metamphetamine, an illegal stimulant commonly used among the homosexual community.

HIV normally takes a decade to develop into AIDS and doctors were surprised by the outcome for this patient. Dr Martin Markowitz, of the Aaron Diamond Aids Research Centre, New York, led the research; he said that additional research needs to be done to establish the cause of the rapid progress of the disease, and whether this had anything to do with metamphetamine use. An accompanying editorial of the journal stated that ‘prevention remains the most effective strategy to combat HIV’, in spite of recent medical advances.

Meanwhile, in the UK, four senior HIV/AIDS specialists have called for HIV to be classified as a sexually transmitted infection so that free treatment can be given on the National Health Service (NHS). Professor Brian Gazzard of Chelsea and Westminster Hospital in London argues that it is actually cost effective to pay for drug treatment (£7,000 per annum); by preventing a single transmission, it is estimated that the NHS will save between £0.5-1m. (Lancet 2005;365(9464):1099, Telegraph 2005; 18 March, Guardian 2005; 8 March)

And finally…

Robotic dolls that simulate the appearance of babies born with fetal alcohol syndrome (FAS) and drug addiction are being used to teach teenagers the dangers of drink and drugs.

The dolls, which shake and scream as they simulate going through withdrawal, are provided by the Fairbridge charity from its Middlesborough office. They weigh just 3.5lb compared with the normal 7.5lb dolls, have caved in chests and smaller internal organs. The dolls are programmed for a two-night period and given to the young people to care for single-handedly. Linda Porter from Fairbridge commented, ‘It is a shock effect for the young people. They beg quite often but the dolls can’t be turned off… You can tell young people many times about the effects of drugs and drink and then they are given these babies and see the effects for themselves.’

FAS is the biggest cause of non-genetic mental handicap in the Western world. It can permanently damage the brain, heart and liver of the unborn child and cause facial disfigurements and damaged muscles. (Observer 2005; 13 March, bbc.co.uk 2005; 15 March)