News Review

Euthanasia at home and abroad

The Patient Assisted Dying Bill was the subject of seven hours of debate when it underwent its second reading in the House of Lords on 6 June.

Since the bill was introduced to the House of Lords by retired human rights lawyer Lord Joffe in February this year, it has received much media attention, with voices on both sides of the argument straining to be heard. More than 50 peers took part in the debate, and many commented on the overwhelming public correspondence they had received on the issue.

The bill has already been examined by the parliamentary Joint Committee on Human Rights, which concluded that the safeguards were adequate to 'protect the interests and rights of vulnerable patients. They would ensure that nobody could lawfully be subjected to assisted dying without his or her fully informed consent.' In his opening speech Lord Joffe referred to examples of other countries where 'we see assisted dying laws working well' as support for his bill, as well as a supposed 81% of the public favouring change.

Another key issue in the debate has been the recent spate of 'suicide tourism'. Swiss based organisation Dignitas provides medical assistance for terminally ill patients to kill themselves. Since Reginald Crew became the second Briton to make use of these services in January this year, a number of other people have followed suit.

In April Robert and Jennifer Stokes both received assistance to die, yet neither was terminally ill. Mrs Stokes' family knew nothing of the couple's plans and were devastated by the news. They have called for Dignitas to be shut down. The case brings into question the effectiveness of a 'terminal illness' clause in euthanasia legislation. Vivienne Nathanson, of the British Medical Association said, 'It certainly strengthens my view that it is very difficult to write the law so tightly that you don't get unexpected consequences. That has to give everyone cause for concern, whether they are for or against.'

Most recently John Close, a 54 year old motor neurone disease sufferer, flew to Zurich to die at the Dignitas clinic with his family at his bedside.

'Aiding and abetting' a suicide is officially illegal in the UK under the 1961 Suicide Act, and families who travel abroad with their dying relatives could be liable to prosecution. However, since the Merseyside police decided against prosecuting Reginald Crew's widow for accompanying him to the Dignitas clinic, other families of terminally ill patients may pursue this route with greater confidence. The Swiss authorities are currently investigating ways of making it harder for foreigners to travel there for assisted suicide, but it may be some time before the new rules are in place. (Guardian 2003; 15 April, 6,7 June, bbc.co.uk 2003; 27 May, Guardian 2003; 10 April, Sunday Times 2003; 20 April, telegraph.co.uk 2002; 14 September)

Will doctors assist death?

An internet survey commissioned by the pro-life charity Right to Life indicates that 74% of doctors would refuse to perform assisted suicide if it were legalised.

986 doctors responded to the survey, which was carried out by the independent Opinion Research Business using a random selection of 9,000 members from doctors.net.uk, the foremost medical internet company in the UK. 56% of respondents agreed with the House of Lords Select Committee on Medical Ethics statement, which said that it would be impossible to set safe boundaries on euthanasia. However, the survey showed sharp divisions depending on whether doctors are prepared to assist death; those who are tended to disagree with the Lords' statement (86%). Major concerns were also raised about the clinicians' ability to separate a patient's true wish to die from pressure from families and friends.

This survey contrasts with one carried out by the Voluntary Euthanasia Society in January this year, which indicated that 55% of 1,002 doctors of all specialities supported physician assisted suicide where a terminally ill patient requested it. This survey was carried out through medix-uk.com, and it is not clear what sampling methods were used to obtain responses. (bbc.co.uk 2003; 13 May, opinion.co.uk/news.htm, ves.org.uk/resources.html)

Designer baby go ahead

A couple seeking to create a 'designer baby' who would be a suitable bone marrow donor for their four year old son have been given the go ahead by the Court of Appeal. The decision overturns a previous ruling that prevented Raj and Shahana Hashmi from using pioneering in vitro fertilisation (IVF) technology to select a suitable embryo. Their son, Zain, suffers from ß thalassemia and previous attempts to find a suitable tissue donor have proved unsuccessful.

In December, the High Court ruled that the Human Fertilisation and Embryology Authority (HFEA) did not have the authority to license the technique that would be used in this procedure - tissue typing with embryo selection. This new decision reasserts the HFEA's position as a suitable regulatory body for such technology.

Zain's current treatment regime involves subcutaneous desferrioxamine infusions several times a week, as well as monthly blood transfusions. It is hoped that stem cells from the baby's umbilical cord blood would be suitable for initiating a bone marrow transplant - his only chance of a cure.

The ruling will also pave the way for other families in similar situations to access the same privileges. Dr Simon Fishel, of Nottingham's Centre for Assisted Reproduction, is treating the family. He was keen to dispel fears that it will open the floodgates for social designer babies: 'The procedure involved will remain highly regulated by the HFEA, and strict conditions will apply to all couples seeking this treatment on a case by case basis.' The Hashmis began IVF treatment in May.

Meanwhile on 16 June, another UK family welcomed the arrival of a baby genetically selected to act as a stem cell donor for his older brother who suffers from Diamond Blackfan anaemia. Michelle and Jayson Whitaker travelled to Chicago for the selection procedure as the HFEA refused to grant permission for it to take place in the UK. (bbc.co.uk 2003; 8 April, Financial Times 2003; 9 April, BMJ 2003; 326:782, 326:1106, Guardian 2003; 22 June)

Gene test blunder

A prenatal screening programme for Cystic Fibrosis (CF) in the United States may have led to hundreds of women undergoing unnecessary tests during pregnancy, and even abortions. For the past two years, a national programme has been in place to enable all couples to undergo genetic testing in order to determine whether or not they are carriers of CF. However, it is feared that many of the results may have been misinterpreted and have led to women undergoing amniocentesis, which carries the risk of miscarriage.

The screening procedure involves testing parents' blood and saliva to see if they carry any genetic mutations. If they are both carriers, they have a one in four chance of conceiving a child with CF. Further tests can be carried out to determine whether or not the fetus's DNA has two defective genes.

A possible 900 mutations can cause all or some of the symptoms of CF, but the screening tools used only test for about 35 such mutations. One common mutation is known as 5T, however this only contributes to disease if its rarer counterpart, R117H, is also present. It has been revealed that over 20 prenatal tests had been performed on fetuses whose parents carried the 5T mutation alone, and this had led to some terminations. According to Michael Watson, director of the American College of Medical Genetics, 'at least 150 prenatals [have] been done which perhaps should not have been.'

In the UK CF screening is currently only offered to parents of newborn babies in Scotland. However, the government has pledged to introduce this in England. There are no plans to introduce a national antenatal screening programme. (bbc.co.uk 2003; 30 April, newscientist.com 2003; 30 April)

Human Genome Project complete

The Human Genome Project has been completed two years ahead of schedule. The announcement comes in the 50th year after the DNA double helix was discovered. A draft of the genome was finished in 2000.

The project has involved scientists from the USA, UK, Japan, Germany, France and China. In total three billion letters of DNA have been sequenced. The news has brought with it much optimism as it is hoped that it will lead to a better understanding of the role of genes in medical conditions and to the development of new treatments. Prime Minister Tony Blair described it as a 'landmark achievement that would reduce human suffering'.

It is hoped that there will be an increase in the accuracy of genetic diagnosis and it may soon be possible to tailor treatment to a patient's genetic make up. (Scotsman 2003; 14 April, BMJ 2003;326:838)

GM crops latest

The first genetically modified (GM) crops have been planted in India. Over 50,000 farmers have planted a modified version of the cotton plant known as Bt Cotton. The Bt Cotton is resistant to the bollworm, a bug that has caused havoc in India's cotton business for years. In the past farmers used large amounts of harmful pesticides to kill the worm but it is hoped that the new crop will make the use of chemicals avoidable.

Many concerns have been raised since the planting took place. Some scientists fear that other insects will become resistant to the new cotton so farmers will need to start using pesticides again. There are also worries about the modified crop entering the food chain and the risks this might generate, as the use of cottonseed oil in cooking is widespread. India has planted the Bt cotton in an effort to become a world exporter of cotton within the next five years. The price that the people may have to pay for the use of GM crops is yet to be seen.

The commercial growing of a genetically modified potato is also expected to be approved in India within the next few months. The 'protato' has been specifically designed to provide nutrients lacking in the diets of many of the country's poorest people. It contains a third more protein than normal, as well as high levels of other essential vitamins. It has been created by the addition of a gene from the amaranth plant, which is rich in protein. The head of the Indian government's Department of Biotechnology, Dr Manju Sharma, has said that the potato would be given free to children at government schools to try and reduce the problem of malnutrition.

Meanwhile, the UK government is currently sponsoring the country's first nationwide public discussion about GM issues. The GM Nation debate involves a series of public events across the country aimed at finding out how the public feels about the use of GM foodstuffs. The results will hopefully be known this autumn and the government has promised to consider the outcome of the meetings before making any further policy decisions. However, the exercise has been heavily criticised by environmental groups. A MORI poll in April found that 56% of Britons are opposed to the use of GM products, with 14% in favour. (gmpublicdebate.org, Guardian 2003; 8 May, bbc.co.uk 2003; 11 June)

Gay bishop set to be ordained

A gay priest looks set to be ordained as Bishop of Reading later this year, despite fierce criticism from evangelicals within the Church of England.

Canon Jeffrey John, 50, has been in a long term relationship with his male partner for 27 years. He says he is now celibate. He has been a campaigner for gay rights for many decades and last year contributed to a collection of prayers for homosexuals. He has also admitted ordaining another gay priest.

He was appointed by the Bishop of Oxford, the Rt Rev Richard Harries, in a move supported by the head of the Church of England, the Archbishop of Canterbury, Dr Rowan Williams.

Dr John's appointment has been described as 'catastrophic' by evangelicals. A group of nine bishops have written to the Times stating their opposition and there is real concern about a growing split within the church.

The news comes only weeks after the election of Canon Gene Robinson as Bishop of New Hampshire in the USA, the first Anglican bishop to be openly living with a gay partner. (bbc.co.uk 2003; 22 June, Times 2003; 27 May, 9 June)

Moves to ban loophole in genital mutilation law

New legislation could increase the penalty for parents who take their daughters out of the UK to undergo circumcision. The Female Genital Mutilation (FGM) Bill will make it illegal to take girls abroad for the procedure, raising the maximum imprisonment from five to 14 years.

About 74,000 first generation African immigrant women in the UK are thought to have undergone FGM. The procedure is usually performed on girls between the ages of four and thirteen, but new born babies and young women before marriage or pregnancy can also be targeted.

The operation involves the surgical removal of the clitoris and sometimes parts of the labia, reducing the ability to feel sexual pleasure. It frequently leads to medical complications and even death - women who have suffered genital mutilation are twice as likely to die in childbirth and three times as likely to give birth to a stillborn child.

Reasons given for carrying out the practice include custom and tradition, religious demand, family honour, hygiene and prevention of promiscuity. FGM is common among Somalian, Ethiopian, Eritrean, Yemeni, Malaysian and Indonesian communities. It is more common among some Muslim communities but is not exclusively associated with Islam.

Home Secretary David Blunkett welcomed the bill, put forward by MP Ann Clwyd. 'Female genital mutilation is a barbaric practice that is rightly illegal in this country… I am determined to ensure this vile practice is completely outlawed by closing this loophole,' he said. (parliament.the-stationery-office.co.uk 2003; 21 March, bbc.co.uk; 23 March)

Cannabis-based drug on prescription

The first cannabis-based medicine is about to be made available to patients on the NHS. The Medicines Control Agency is expected to give the go ahead this summer to Savitex, a sublingual spray that helps to alleviate pain and muscle spasms.

Many of Britain's 85,000 multiple sclerosis sufferers could be among the first to receive the new drug as it is thought to reduce nerve pain and sleep disturbance. Studies have shown that it may help to ease the symptoms of several diseases and additional trials are currently assessing its value in treating the pain of cancer and spinal cord injury.

The cannabis-derived medicines do not contain the active psychotropic substance found in recreational cannabis, so patients taking the new drugs will not become intoxicated. The drugs will not be subject to the international treaties banning the production and sale of cannabis. (Daily Mail 2003; 14 April, Guardian 2003; 22 March)

Cannabis - a major health hazard

A leading toxicologist has warned that cannabis could be killing 30,000 people a year. John Henry, professor at Imperial College, London, reported that regular users have a fourfold increase in schizophrenia and major depressive illness.

The National Institute for Clinical Excellence (NICE) estimates that treatment of schizophrenia in England and Wales costs £1bn a year, accounting for three per cent of the total NHS bill. However, rates of schizophrenia have not risen dramatically in the past 50 years to correspond with increasing use of the drug. Professor Henry's figures are based upon regular cannabis use over a year and opponents have argued that normal use is likely to be much smaller.

The reclassification of cannabis from a category B drug to category C takes place this summer, following recommendations from the Police Federation. According to Professor Henry, the government has overlooked the burden this will place on the NHS by creating a dangerously permissive climate for its use.

The main active ingredient in cannabis - tetrahydrocannabinol (THC) - has a marked effect on the cardiovascular system. According to the British Lung Foundation, three joints may do as much damage as twenty cigarettes. Cannabis smokers inhale larger volumes and hold smoke down far longer, causing higher levels of chemicals to be retained. (Observer 2003; 6 April, Daily Mail 2003; 7 April, Daily Express 2003; 2 May, Guardian 2003; 2 May)