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ss nucleus - spring 2007,  News Review

News Review

Government proposals to ban hybrids challenged

Hybrid embryos are to come under scrutiny again after the Human Fertilisation and Embryology Authority (HFEA) launched a public consultation to ask whether they should license research using human-animal hybrid embryos.

This current consultation follows an array of recent government and media discussion on the issue. In December 2006 the government released their white paper – intended to lay the foundation for a draft bill that would eventually replace the 1990 Human Fertilisation and Embryology Act – in which they proposed an outright ban on the creation and use of hybrid embryos. This paper was the result of wide public consultation.

The House of Commons Science and Technology Committee reacted by conducting its own speedy consultation. Their final report – published in April – concluded that hybrid embryo research is needed for scientific progress and that the government's proposed ban is 'unnecessary'. On the day their results were published a petition signed by 223 medical charities and patient organisations was presented to the Prime Minister, urging the government to rethink the ban. It looks increasing likely that the government will oblige. Health minister Caroline Flint told MPs it was possible the ban will be absent from the draft bill.

Two teams of scientists – at King's College London and the University of Newcastle – have already applied to the HFEA for licences to use hybrids in research. They would use the same procedure as that used for cloning – cell nuclear replacement – but would put human DNA into animal eggs. Primarily this is an attempt to overcome the shortage of human eggs for research. The resultant embryos would be 99.9% human and 0.1% animal. The scientists would then use them to produce embryonic stem cells for research into diseases such as Parkinson's, Alzheimer's and cystic fibrosis. The HFEA are keeping the applications under review until the consultation results are in.

Liberal Democrat MP Dr Evan Harris, who is opposed to the government's proposed ban, challenged the consultation, saying that 'scientific research should not be subject to referendum'. HFEA Chair Shirley Harrison claimed the consultation is not intended as such, '…this is not a referendum with “votes” counted for or against…we want to understand why people feel worried or enthusiastic about this research in order to help us make a judgment about the best way to proceed.'

Josephine Quintavalle of pressure group Comment on Reproductive Ethics (CORE) said, 'It is appropriate the public has a chance to debate the issue, but we need to hear much more about the science and from the scientists who are opposed to it.' CORE has previously stated, 'Under no circumstances should further consultation in this field be entrusted to the HFEA, which like the Science and Technology Committee, has already expressed its unequivocal support for the creation of hybrids.'

The HFEA are holding a public meeting in June and will survey 2,000 people. Any interested parties are able to respond to the consultation online or in writing. (www.hfea.gov.uk, BioNews 2007; 2 May, BMJ 2007; 10 March, 14 April, Science and Technology Committee Press Release, 2007; 5 April)

Kelly Taylor legal challenge dropped

A terminally ill woman who began a court case seeking help to die has been forced to withdraw after her request for an adjournment was refused.

30 year old Kelly Taylor, who suffers from the heart condition Eisenmenger's syndrome and the spinal condition Klippel-Fiel syndrome, is in constant pain. She is allergic to many of the drugs normally used in Eisenmenger's and her doctors in Bristol have been unable to find a combination of drugs to relieve her pain.

Thought to have less than a year to live, Mrs Taylor started the court action to force her doctors to increase her opiate medication so as to induce a coma. At this point her 'living will', which refuses artifical nutrition and hydration, would come into force. Her doctors have refused her requests, saying that it amounts to euthanasia. A BMA spokesperson supported this view stating, 'Whilst we sympathise with Mrs Taylor's situation, we cannot support her request for doctors to sedate her, to a state of unconsciousness, with the specific intention of ending her life… this would involve the doctors in assisting her suicide, which is both unlawful and unethical.' Her solicitor argued, 'We don't consider that we're asking for anything unlawful and the courts we believe will come to that conclusion too. The only way she can be free from pain is if the doses are increased to the level where she loses consciousness.'

The case opened at the High Court in London at the end of March. However, Mrs Taylor asked for the case to be postponed as she wanted time to investigate alternative pain relief options including non-drug treatments such as physiotherapy. But the defendants (her doctors) rejected her bid for a delay.

A spokeswoman for Dignity in Dying, who have been supporting Mrs Taylor throughout, commented, '[Kelly's] request for an adjournment has been rejected out of hand by the defendants… She feels she has been forced to withdraw her case by the defendants and wishes to express how distressed she is by their actions.'

Peter Saunders commented on behalf of the Care Not Killing Alliance, 'This is a very sad case, but what is needed is not a change in the law to allow such lethal injections, but rather access to the best possible palliative care to all who need it.'

In another development Baroness Finlay's Palliative Care Bill, which seeks to promote the provision of palliative care across England and Wales, has passed through the House of Lords and will now progress to the Commons. However, the government are not expected to grant the bill time during the current parliamentary session. (Independent 2007; 19 April, news.bbc.co.uk 2007; 18 April; www.carenotkilling.org.uk)

Scientists generate sperm from bone marrow

Scientists in Germany have induced adult bone marrow cells to develop into immature sperm cells using a process known as trans-differentiation.

The bone marrow samples from male volunteers would normally be used to generate muscle tissue but in this case Professor Karim Nayernia and his team from the University of Gottingen and Hanover medical school used a small sample to produce spermatogonial cells. These would normally develop into mature sperm cells. The team hope that further experiments will enable mature sperm development within the next three to five years.

Professor Nayernia, now based at the Centre for Life in Newcastle, hopes the techniques might then be used to help men rendered infertile by chemotherapy.

However, such developments may not be useful in the UK as a current government white paper – which will eventually replace the 1990 Human Fertilisation and Embryology Act – proposes to ban the use of artificially generated gametes.

Other scientists are cautious about the results, warning that trans-differentiation results are often misleading and need rigorous testing to be confirmed. Professor Henry Moore, of the Centre for Stem Cell Biology at Sheffield University, also warned that such manipulation of adult stem cells can cause genetic damage, making any resulting sperm unsafe for fertility treatments.

The findings were presented at an international fertility conference and published in the academic journal Reproduction: Gamete Biology. (BioNews 2007; 17 April, news.bbc.co.uk 2007; 13 April, Review of the Human Fertilisation and Embryology Act 2006; 14 December - www.dh.gov.uk)

Job application fiasco

MTAS (Medical Training Application Service) is an important part of the UK's new postgraduate training programme, Modernising Medical Careers. Unfortunately, MTAS has been plagued with problems since the website went online in January and deadlines were repeatedly pushed back. The website could not cope with the number of applicants who logged on, leading to data loss and problems with filing applications. Then shortlisting of candidates was held back by technical problems and the large workload. The design of the application form, which did not allow a CV to be attached, has also been criticised.

In March, consultants from the West Midlands boycotted the process because of its problems. This led to a government review of the first stage of the process, with a subsequent decision to conduct a further long term review in time for next year's application. This did not assuage thousands of junior doctors who gathered to protest in London and Glasgow on March 17th. A major cause of discontent is the shortage of jobs caused by the change in training programmes, which means doctors who began training one, two, and three years ago are competing for one year's worth of jobs. The BMA estimates that 34,000 doctors are applying for 18,500 training posts. Additional service (non-training) posts will be provided but these are limiting in terms of career progression.

As a result, many British doctors are considering going overseas. The issue of whether international medical graduates will be equally treated in the second round is still under debate. Adding fuel to the fire was the website's security lapse in April that meant confidential applicant information, belonging to junior doctors and medical students, was accessible by other applicants. This could be done simply by altering the digits of the individualised web addresses.

The government's priority is to ensure that this cohort of applicants is fairly treated, but evidently there is much to be learnt for next year. CMF has issued a press release calling the church to pray on behalf of junior doctors - www.cmf.org.uk/press_release/?id=88. (news.bbc.co.uk 2007; 7 March, 1 May, ehiprimarycare.com 2007; 4 April, channel4.com 2007; 27 April, BMA News 2007; 28 April)

PGD boundaries further expanded

The HFEA has agreed in principle for two couples to have preimplantation genetic diagnosis (PGD) to select embryos that don't carry the BRCA1 gene. BRCA1 raises the risk of breast cancer in adulthood by 60-80%. Together with BRCA2, it accounts for about five per cent of the 41,700 cases of breast cancer diagnosed annually. Final approval for the procedure is expected within the next few months.

The two couples, both with a family history of breast cancer, will be the first to use such screening, for which they are under the care of University College Hospital, London. UCH previously received an HFEA licence to screen for the late onset bowel cancer Familial Adenomatous Polyposis (FAP) in 2004. They then obtained a licence to screen for the curable eye cancer retinoblastoma, which affects 90 per cent of people who inherit the gene. The first PGD baby selected free from the condition was born earlier this year.

The expansion of PGD licensing to include 'low-penetrance' genes – those that increase risk but don't definitely cause disease in the offspring – comes on the back of an HFEA consultation in May 2006 where the HFEA agreed to wider screening in principle, saying decisions would be made on a case-by-case basis. Previously PGD was only licensed for 100% penetrant genetic disorders such as cystic fibrosis. The consultation has caused controversy, with critics concerned that this is the beginning of a 'slippery slope' to designer babies – where embryos would be screened for non-lethal or even trivial traits.

One of the couples seeking PGD for BRCA1, Helen and Matthew, spoke to the Times of their experience: 'I (Helen) have lived much of my life with cancer and death, and the fear that I might have to face it and might pass on the risk to my children… This gives us a chance to make sure that our daughters won't have the same experience.

'CORE spokeswoman Josephine Quintavalle commented, 'This is not an acceptable way forward. It is not a solution to breast cancer and not a cure.'

In another development, the Bridge Clinic in London is planning to apply to the HFEA for a licence to use PGD to screen for Early Onset Alzheimer's Disease (EOAD). About 5% of Alzheimer's sufferers have EOAD, where the dementia starts in the 40s rather than beyond 65. For the couple seeking treatment – Charl and Danielle de Beer - the disease runs in Mr de Beer's family, with his mother, grandmother and two uncles all dying prematurely from the condition. He commented, 'My family has been dealing with Alzheimer's for 15 years now. I am not prepared to run the risk of passing this on to my kids.'

The Bridge Clinic has also recently been granted an HFEA licence to treat a couple who want PGD to ensure their child does not inherit a severe genetic squint. The father-to-be, and his father, both have the condition – congenital fibrosis of the extra-ocular muscles – which causes the eyes to look only downwards or sideways. Several operations may be necessary to try to correct the squint, with only marginal improvement. Clinic director Professor Gedis Grudzinkas commented, 'We will increasingly see the use of embryo screening for severe cosmetic conditions…I would assess [an individual case] on its merits…it all depends on the family's distress.' David King of Human Genetics Alert said, 'This has gone a good deal too far because this condition, despite being somewhat disabling, doesn't shorten life in any way.' (Telegraph 2007; 7 May, news.bbc.co.uk 2007; 26 April, Times 2007, 26 April, BioNews 2007; 4, 24 April)

Sexual orientation regulations

The Sexual Orientation Regulations (SORs) came into force on 30 April as part of the government's Equality Act. The legislation was passed by 168 votes to 122 in the House of Lords. David Hanson, Labour MP and minister of state for Northern Ireland said, 'this is not just about legislation; it is about ultimately changing the culture of our society', describing the regulations as 'the moral and appropriate thing to do'. Others have pointed out that discrimination cuts both ways: in making discrimination on the grounds of sexual orientation unlawful, the SORs discriminate against those with strongly held religious convictions. Thomas Cordrey, a barrister with the Lawyers' Christian Fellowship (LCF), said 'within the first week of the regulations coming into force, we have been contacted by dozens of Christians who are required under the new law to provide goods and services in a way that condones homosexual practices. It is sadly inevitable that in staying faithful to the Bible's teaching on sexual morality, some of these people will lose their livelihoods'. LCF has produced a guidance pack for churches, charities, organisations and individuals, available at www.lawcf.org.

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