A mother treated at Mohamed Taranissi’s groundbreaking clinic in London defends him against the Panorama/HFEA witch-hunt. A big reminder of how dangerous it can be to leave anything to bureaucrats
I have Mohamed Taranissi’s groundbreaking IVF clinic to thank for my beautiful son. And many more parents have had children thanks to the insights and efforts of the ‘miracle makers’ at his London clinic. So why are the regulators of human fertilisation work in Britain, who claim to protect our interests, now witch-hunting Mr Taranissi?
His clinic, the Assisted Reproduction and Gynaecology Centre (ARGC), is the most successful in Britain. Yet on Monday it came under assault from both the media and the industry regulator, in what appears to be a collaborative effort to undermine the credibility and reputation of the clinic and its chief consultant, Taranissi. On the same day that the BBC TV aired a Panorama special investigative report on the clinic, in which undercover journalists posed as infertile women, the regulatory body, the Human Fertilisation and Embryology Authority (HFEA), launched a police-assisted raid on both the ARGC and Taranissi’s other clinic, the Reproductive Genetics Institute (RGI).
The HFEA has denied that it worked in tandem with Panorama, instead claiming that the timing of the raid on the same day that the programme aired was purely coincidental. However, it certainly looks like a publicity stunt, and it’s not the kind of thing you would expect from what is supposed to be an impartial regulator with an ongoing inquiry into and legal dispute with a doctor. It raises questions not only about standards in public life but more pressingly: Why have they got it in for him?
Taranissi’s relationship with the HFEA has been a strained one. The fact that the ARGC has a fairly aggressive approach to the treatment of infertility means that as well as topping the HFEA’s own published league tables for IVF success rates for the past 11 years, the ARGC continually pushes against the current boundaries of ethical treatment. For instance, Taranissi pushed for the HFEA to allow preimplantation genetic diagnosis of embryos (PGD) in order that parents might produce a baby whose cord blood could possibly cure a sick older sibling. After there was widespread publicity and support for the successful treatment of British child Charlie Whitaker in this way, the HFEA finally dropped its official opposition to the use of PGD for such purposes.
It seems that Taranissi has been a bit of a thorn in the side of the HFEA, continually forcing it to rethink its extremely cautious approach to new treatments. For its part, the HFEA seeks to portray him as obstructionist, placing his clinic at the bottom of their table for compliance with industry standards – without, it seems, providing any breakdown of the way the results were compiled.
As well as getting up the noses of the regulator, Taranissi’s leadership and success in the field of infertility treatment has led to much resentment among his colleagues in the field. The fertility industry teems with doctors who sneer when his name is mentioned. This I know through personal experience; I went through a period of infertility and suffered recurrent miscarriages, and many of the fertility doctors I came into contact with had something negative to say about him. I was intrigued by the professional jealousy directed towards this extremely successful London consultant, often by doctors who usually told me there was nothing they could do for me and that I should adopt, try again, or just give up. Perversely, perhaps, it made me wonder what he had going for him and I sought a consultation at the ARGC to find out. This happily resulted in the birth of my son. After seeing, firsthand, the rivalries involved in the fertility profession, it did not surprise me in the least that Panorama could compile an impressive panel of experts to criticise Taranissi’s work.
Fertility treatment is an area of much uncertainty; it is fraught with ethical concerns. More research needs to be done, for sure, but advances will not be made if an over-cautious approach is taken. Attacks on those who are trying to push things forward because they irritate the regulator, or provoke jealousy among their colleagues, or are simply making a lot of money, will not help this state of affairs. In a climate in which there is a general fear and distrust of experimentation, we need people like Taranissi, people who are willing to challenge the status quo and experiment with new approaches. The ARGC was the first clinic to freeze and thaw human eggs, the first to perform PGD, and it is among the leaders in the field of reproductive immunology.
This latter area – immunological treatments – was of central concern to the BBC’s expert panel. While it is certainly a contested area of treatment, the Panorama programme did not mention that one of the experts it interviewed – Lesley Regan of St Mary’s miscarriage clinic – is herself overseeing a clinical trial into the effect of Natural Killer Cells on implantation. When I visited Regan’s clinic as a patient, I was told to await the outcome of this clinical research, which would have been published when I reached 40 years of age – that is, when my fertility would be seriously compromised by my age. I was glad to have the opportunity to try the treatment immediately at the ARGC.
As a former IVF patient and now a mum, I strongly object to the way that the Panorama programme portrayed patients as ‘vulnerable’ and ‘desperate’. I was actually rather well-informed; I was aware of the research and successful treatments conducted in the United States (where there is very little regulation of IVF clinics); and I was strong-willed enough not to take no for an answer. None of the women I know who has been through IVF at the ARGC was manipulated or exploited; they knew what they were going in for because Taranissi and his staff are very clear about the nature of the treatment and the risks and benefits involved.
Of course, IVF has no guarantees and it is a shame that it cannot be provided in a timely and cost-free manner on the National Health Service. But in the current situation, where 80 per cent of IVF treatments are private, many couples will lose money on the gamble that is fertility treatment. That is not any one individual’s fault, and, in fact, the high success rate of the ARGC means fewer couples are disappointed there than elsewhere. It is a shame that the BBC’s reporters did not see fit to interview some of Taranissi’s real patients rather than sending in journalists in an underhand subterfuge. I think they would have heard a very different story: one of a dedicated, hardworking and honest doctor, whose success comes largely from his close attention to detail and his amazing accessibility. As a patient of his, I was given his personal mobile phone number to call in case of any concerns or questions. I was also monitored daily, receiving phone calls to remind me of the dosage and timing of drug administration.
My son turned two in November. He is a constant reminder to me not only of luck and love, but of the miracle that is modern medicine.
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Behind the IVF ‘trial by television’
There is more to the HFEA regulators' pursuit of top infertility doctor Mohamed Taranissi than meets the viewer's eye.
The Human Fertilisation and Embryology Authority (HFEA) claims that its investigations into IVF clinician Mohamed Taranissi – which have been splashed across the headlines this week – are part of its important regulation of IVF treatment in Britain. It even led raids on Taranissi’s clinic on Monday, in tandem with a BBC Panorama documentary ‘exposing’ Taranissi. However, spiked has learned that there is more to this than meets the eye, and that the HFEA has been curiously heavy-handed in its dealings with Taranissi, and possibly unprofessional in its dealings with Panorama.
On Monday, the BBC’s flagship current affairs programme Panorama launched its new-look series with an attack on Taranissi. On the day the programme was broadcast, the HFEA went to court to obtain a warrant to gain entry to Taranissi’s two clinics, the London-based Assisted Reproduction and Gynaecology Centre (ARGC) and the Reproductive Genetics Institute (RGI). They demanded access and removed paper files and computers – and it all occurred in time for the incident to be reported as part of the Panorama broadcast and then later in TV news bulletins.
For all the headlines about ‘Police raids on “illegal” IVF doctor’, the HFEA-led raids (more accurately inspections) had nothing to do with any scandal uncovered by Panorama. Rather they related to an ongoing dispute between Taranissi and the regulator about the licensing of his clinics. The only link between Panorama and the HFEA’s inspections would appear to be the coincidence of timing. And some influential figures are raising grave concerns about this apparent coincidence. Dr Evan Harris MP, a member of the House of Commons Science and Technology Committee, told BBC Radio 4’s Today programme: ‘It’s extremely unusual for an investigator, a regulator, to be seen to be cooperating with journalists in terms of releasing information about one of the people they are regulating, and also to be giving interviews to that programme which is clearly an investigative journalist programme.’
The HFEA says the raids were necessary because new information has come to light and whistleblowers have come forward, and because Taranissi and his lawyers have been difficult and obstructive in response to the HFEA’s requests for information. The HFEA tells me it is unable to provide further details on this new information, or on Taranissi’s ‘obstruction’, because there is an ‘ongoing regulatory process’.
Yet the question of why the HFEA suddenly decided to raid Taranissi’s offices, in time for a sensationalist TV documentary, is a pertinent one – because the HFEA and Taranissi had, until that moment, been in fairly civil and official discussions about the licensing of his clinics.
Only last Wednesday, 10 January, Taranissi and his lawyers visited the HFEA for a Licence Committee hearing. It was part of the ongoing discussion about the renewal of his licence for the RGI, and the HFEA’s threat at the end of 2006 to revoke his licence for the ARGC. According to Taranissi and his lawyer, they believed that at the meeting they supplied the HFEA with all the information it had requested, and met the conditions laid out by the HFEA to avoid the ARGC licence being revoked and to have the RGI licence reinstated.
At no point in the meeting did anyone indicate that there might be a problem with the information supplied, Taranissi’s lawyer tells me. Indeed, Taranissi later received a letter by fax thanking him for his attendance and for the work he put into his presentations. The letter said the HFEA needed more time to analyse the information provided by Taranissi, and said that if the Licence Committee was satisfied that all outstanding information had been submitted, and Taranissi had successfully completed a Person Responsible Entry Programme, the notice to revoke the licence for ARGC would be withdrawn immediately and his application for a renewal licence for the RGI clinic reconsidered. The letter suggested that the meeting be reconvened on 5 or 7 February.
Yet the next that Taranissi heard from the HFEA was when its head of inspection turned up on his London clinic’s doorstep, with police sergeants from Scotland Yard waving a warrant to search the premises and camera crews in tow. Why was a dramatic, TV-friendly raid necessary? The lead inspector says it was because Taranissi’s clinics had failed to provide all the information, despite repeated requests. Yet given that Taranissi was at the HFEA providing information just days earlier, and understood that he would be returning there in early February, surely it would have been more appropriate to have contacted him by letter or phone pointing out the deficiencies discovered subsequent to the letter faxed by the HFEA’s Licence Committee chair on Wednesday 10 January?
This is not the first time the HFEA has been prickly with Taranissi – it has previously treated him differently to other IVF doctors. Consider the dispute over the licensing of his RGI clinic in 2005/2006.
In 2005 there was a dispute over the renewal of his RGI licence, primarily because the clinic did not provide the requisite information to the HFEA in a timely fashion. In January 2006 the HFEA notified Taranissi that the RGI no longer had a licence and that he would have to operate under Special Directions to treat existing patients until matters were resolved. However, following further negotiations and discussions, Taranissi was offered a three-year licence for the RGI in June 2006. HFEA inspector Debra Bloor wrote to Taranissi on 19 June to outline the offer of a licence.
However, the offer contained a very specific condition – namely that no ‘three-embryo transfers’ could be carried out at the centre. Taranissi duly completed the form, ticking the box to say he accepted the licence and the conditions. He also added a handwritten one-sentence note at the bottom of the form, stating that he would like to make representations regarding the special condition on three-embryo transfers attached to the licence. Taranissi says he has done this kind of thing before, on other licence offers where there was a condition he wished to challenge, and it had never been a problem.
On this occasion, though, the HFEA decided that a licence could not be provided pending Taranissi’s representations about that one condition – that is, a licence would not be provided on the basis of his one-sentence written remark. The HFEA has decreed that three-embryo transfers are too risky; its Code of Practice stipulates that licensed centres must ensure that women under 40 receive no more than two eggs or embryos; but it does allow women over 40 to be given three eggs or embryos, but no more than three.
Taranissi says he is unaware of any other clinic being forbidden by the HFEA from carrying out any three-embryo transfers, as his RGI clinic was last year. And he thought it entirely reasonable to say that he wanted to make representations about this seemingly unfair measure. Taranissi also points out that the HFEA’s Code is not actually law, and he objects to interference in his clinical judgments made in consultation with his patients.
Because Taranissi has previously accepted licence offers while commenting on certain conditions, he assumed that the licence offered by the HFEA for RGI in June 2006 was in place, and he continued treating patients. When the HFEA found out, it wrote to Taranissi on 21 July saying a licence had not been granted to the RGI and that Special Directions would be put in place to allow the continued treatment only of patients whose treatment had begun before 24 July. A Licence Committee meeting on 27 July decided that the offer of a licence to RGI should now be withdrawn, due to a change in circumstances since the offer was made.
Things then spun further out of control. The HFEA continued to pursue Taranissi over his work at the RGI, and took the extraordinary step of effectively threatening to shut down both of his clinics.
On 25 September 2006, the HFEA’s director of regulation wrote to Taranissi asking for copies of all records of treatment carried out at the RGI since 21 July. The HFEA wanted the records by 4 October. When it didn’t receive them, the HFEA upped the stakes further – deciding that it could no longer be sure that Taranissi was a suitable person to be holding a licence to carry out fertility treatment. The HFEA wrote to him on 22 November 2006 informing him that the Licence Committee had decided to propose revoking his licence at his other, primary clinic, the AGRC. In layman’s terms, they were proposing to shut him down.
As Taranissi points out, none of this had anything to do with patient safety, and certainly the controversies seem bizarre when you consider that Taranissi is one of the most successful IVF doctors in Britain. Rather, the HFEA seems to have been chasing him, and proposing revoking his licence, over matters of paperwork. Here, the regulatory, bureaucratic impulse seems to take precedence over allowing Taranissi to continue successfully and safely treating many women. And the HFEA says it represents infertile women’s interests.
It was the HFEA’s proposal to revoke Taranissi’s licence for the ARGC as well as the RGI that led to the current clashes. A letter from the HFEA’s director of regulation, dated 24 November, listed for Taranissi all the information he had to submit if he wished to keep his licence. And Taranissi and his legal team believed they were providing precisely this information at the meeting with the HFEA on 10 January, a few days before the Panorama programme and the coinciding HFEA-led raids. Taranissi’s lawyer tells me that in that two-hour meeting, they painstakingly made sure that the information in two lever-arch files handed over to the HFEA contained, as far as they could tell, everything requested.
Yet days later, the police, the HFEA and camera crews came knocking.
There are other elements about the HFEA’s relationship to Panorama that Taranissi and his lawyers are unhappy about. Such as the fact that there was a camera crew there to greet them on the morning of the 10 January meeting at the HFEA; this footage was included in the programme and reported as Taranissi attending a disciplinary hearing. The HFEA’s solicitors had written to Taranissi’s solicitors the day before the meeting, to point out that there would be members of the press outside the HFEA’s offices on 10 January; but they claimed that it was in relation to an entirely separate issue and in no way related to their attendance at the HFEA.
Taranissi and his team are also upset that Panorama was provided with information that Taranissi had no means of commenting on. Following a Freedom of Information request, the Panorama team was given information about the ARGC clinic. It related to the HFEA’s Driving Improvements report published on 8 December 2006, in which the HFEA produced a graph ranking clinics according to their ‘compliance’ with HFEA Codes of Conduct and the HFE Act. The graph listed clinics anonymously, but Panorama managed to discover the score allocated to AGRC: it was minus 29, putting it close to the bottom. Taranissi was keen to know on what basis he scored minus 29, so that he could answer Panorama’s question about his clinic’s ranking; he suspected the compliance was measured by paperwork matters rather than success or safety rates. Between 20 December and being filmed by Panorama on Friday 12 January, he requested information about the graph five times, but it was not provided.
It is hard to avoid the conclusion that the HFEA has been pursuing Taranissi for many months, rattled by the fact that he is successful, experimental and not a big fan of the HFEA’s over-cautious rules and regulations.
What will be the end result of playing these disputes out in the media and presenting Taranissi as some kind of criminal whose clinics must be invaded by FBI-style raids? Patients and potential patients may have their confidence in Taranissi shaken. And if this is undeserved, as many of Tarassini’s former patients strongly argue, it could damage the all-important relationship of trust between doctor and patient during a procedure that is already as emotionally fraught as it is clinically complicated.
For the HFEA, however, which has been proactive in bringing this dispute to a head in a tawdry fashion, the consequences could be rather more grave. We await the new information that apparently necessitated the HFEA-led raids on Monday 15 January. But as things stand, this public regulatory body has shown both a defensive and an authoritarian streak, as it has ensured that its frustrations with one doctor get played out in the public gaze. How can the public have confidence in a body that behaves more like a bullying prefect in a playground than an impartial regulator of national healthcare?
What all this indicates, above all, is the need for a real public debate about fertility treatment, and the kind of regulation that we might want or need. Rather than the HFEA and Tarassini slogging out a dispute through their lawyers and now the media, we should take the opportunity to have a discussion about the broader issues involved in fertility treatment – and how it can continue to be improved and access to it can continue to be widened. Do we need public regulatory bodies empowered to make such decisions, or would we be better off scrapping the HFEA and developing something less bureaucratic instead?
Now, answering that question would make a good documentary.
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