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The good, the bad and the ugly: compassion and corruption in the commercial baby business

12 January 2015

By Ëlo Luik

Appeared in BioNews 785

'Reproductive medicine does not have a good image because it seems to be an area you can make money in.' This is how John Parsons began his historical overview of the relations between profit and treatment in fertility care. It perfectly sums up the predicament put before the panel of session three, 'The Baby Business', at the Progress Educational Trust's annual conference The Commercialisation of Life. Are business and medicine hopelessly intertwined in fertility care, at (quite literally) the expense of the patient? The panel was brimming with expert opinion and impassioned argument from very different perspectives.

Peter Thompson, chief executive of the Human Fertilisation and Embryology Authority (HFEA), got the session off to a calm start that perfectly set the stage. Thompson recognised the responsibility of the HFEA to take action against the rampant commercialisation of IVF in the UK. Unclear and non-uniform pricing leaves both NHS clinical commissioning groups (CCGs) and patients confused about what they should be paying and allows clinics to charge wildly different amounts for what are essentially the same treatments. Moreover, patients have very little control over their treatment costs and don't have a reliable way of knowing how much they will have to pay in the end.

Pricing is a matter of crucial importance. Indeed, unmanageable cost is at the top of the list of challenges for patients and also a reason often given by CCGs for not complying with National Institute for Health and Care Excellence (NICE) guidelines.

Thompson made it clear that, since the HFEA is not an economic regulator, it cannot establish and enforce set tariffs for procedures. But there are things it can do, such as promote better pricing practices through demanding more transparency. Tentative steps, like the requirement for costed treatment plans from clinics, are already being made. And further steps, like listing average treatment costs for each clinic on the HFEA website, are under consideration.

However, Thompson recognised that this is not likely to be enough. He thus went on to argue that a substantive and meaningful improvement of the practice of fertility care in the UK is conditional on a change in its culture and thus a responsibility of clinics and doctors to hold themselves to higher standards.

It might seem naive to expect people to put morals ahead of profits, but Thompson argued that this approach has been successfully implemented in the past, with the reduction of IVF multiple births in the UK by single embryo transfer. Since the HFEA can only indirectly influence the pricing of IVF in the UK, the drive for change must ultimately come from within the profession, he concluded.

What then happens when huge profit margins are taken out of the picture and someone sets out to offer assisted conception at the minimal possible cost for patients? Not much, says Professor Willem Ombelet, co-founder of the Walking Egg project, an initiative that aims to bring low-cost IVF to resource-poor countries.

For Professor Ombelet, taking the business out of making babies is an uphill battle of financial, legal and institutional challenges. The proven widespread need for fertility treatments is, according to Professor Ombelet, not of any use when it comes to looking for funding for his project.

Working in Africa has been especially challenging. Locally, infertility is often too much of a taboo to be publicly raised and prioritised. Globally, the despair of millions of childless people in Africa goes unheard under the powerful narrative of uncontrollable African reproduction and overpopulation.

'There is no interest in fertility treatment for Africa in these countries themselves and in other countries,' Professor Ombelet concluded. The lack of appreciation for the extent of the problem, together with budget constraints of funding bodies has meant that raising the funds for the project has been a long and frustrating journey. On an institutional level, bureaucratic, professional and regulatory bodies have, according to Professor Ombelet, further served to hold back the project. Professor Ombelet affirmed that his methods drastically cut the price of IVF cycles while producing similar success rates. Why, then, has the world not embraced low-cost IVF?

The finger was firmly pointed at fertility specialists by the next speaker, John Parsons, who argued that simple greed had made profits, rather than compassion for patients, the top priority of many fertility clinics today. This critique came from a rather powerful perspective. As former director of King's College Hospital's Assisted Conception Unit, Parsons has extensive first-hand knowledge and experience of the business. Now retired, Parsons capitalised on his freedom to be outspoken and delivered a rather devastating attack on the morals and professional standards of those in the fertility business: 'Money corrupts; and I think what we are dealing with here is an act of corruption.' The audience was definitely entertained and some egos potentially bruised.

Parsons' talk on the evolution of fertility treatments put the current issue of commercialisation in historical perspective, to argue persuasively that none of it was in fact unprecedented. In the days before IVF, its absence had not kept people from making money from infertility. Doctors simply promoted other treatments, even those wihout any proven efficacy. In fact, Parsons argued that many doctors were reluctant to switch to using IVF as it threatened their established business. Ironically, 'compassion for the patients,' is often so low down the list of priorities in the fertility business, that it ends up as an excuse for the use of dubious technologies which are in fact motivated by market forces, said Parsons. He concluded by calling for the establishment of not-for-profit assisted conception units as the only way to guarantee sound practice and fair prices.

Dr Yacoub Khalaf, the final speaker and the director of Guy's Hospital's Assisted Conception Unit, was less radical, yet equally critical of the commercial baby business. His talk focused on the aggressive marketing tactics of fertility service providers and the use of unproven methods. These have led to a 'cookery book' method of IVF where conventional IVF is paired with add-ons of various kinds. Slide after slide the audience was presented with fertility 'miracles'. Some of these, such as fertility astrology, might only have adverse effects on a patient's bank balance. Others, however, might have more serious consequences. Moreover, the advertising campaigns of 'money back guarantees' and bundle deals reveal a disconcerting side to a business that should be devoted to the provision of medical care.

In fact marketing, paired with despair, can work well enough to convince people to demand treatments for which there is no scientific evidence and in spite of their own better judgment. Misinformation is the worst thing for patients trying to navigate the baby business. With so much information out there, it is difficult for people to separate fact from fiction.

Yet Dr Khalaf seemed to have some hope for the commercial model. He did not argue for the complete de-commercialisation of assisted conception. Instead he called for clinics to stubbornly stick to good practice in the face of market pressures, because 'as long as greed is stronger than compassion there will always be suffering'.

Behind the bravado of star speakers and the jokes about fertility astrology was a solid and engaging debate on one of the most crucial questions facing fertility treatment today: Is there a better, cheaper, safer way to help people have babies that is kept from us by commercial interest? If so, why aren't we being more forceful in demanding reproductive justice?

I wondered if there might be something broader and more disconcerting at play here. Is the onslaught of market-savvy pseudo-science closing doors for genuine innovation? Is regulation part of the problem rather than the solution? And, going back to the bigger picture, are patient interests bound to get lost in the fray of market-driven medicine?

Peter Thompson concluded that perhaps the HFEA could be louder and bolder in its judgments about different aspects of the fertility business. While that might also be true, it cannot displace the responsibility on actors within the profession. The call for fertility doctors to take moral and professional responsibility and create a better working culture is as loud as ever. Even if greed can be reined in through external price checks and a short regulatory leash, how would we regulate for human compassion?

The Progress Educational Trust (PET) is grateful to the conference's sponsors - Merck Serono, the Anne McLaren Memorial Trust Fund, the Edwards and Steptoe Research Trust Fund, Ferring Pharmaceuticals, the London Women's Clinic and the Medical Research Council.

Please make a donation to PET's Appeal, so that the charity can continue organising events and publishing BioNews throughout 2015 (and beyond) while keeping BioNews FREE for you to read.

SOURCES & REFERENCES

RELATED ARTICLES FROM THE BIONEWS ARCHIVE

24 July 2017 - by BioNews 
The fourth in a series of videos filmed at the Progress Educational Trust's recent public debate 'Fertility Treatment Add-Ons: Do They Add Up?'...
26 June 2017 - by BioNews 
The second in a series of videos filmed at the Progress Educational Trust's recent public debate 'Fertility Treatment Add-Ons: Do They Add Up?'...
05 December 2016 - by Dr Jane Currie 
Panorama's investigation into the use of 'add-ons' in private fertility clinics is a novel mixture of undercover journalism and a high-quality systematic review of the clinical evidence...
05 December 2016 - by Professor Adam Balen 
Professor Adam Balen argues that the recent Panorama investigation into the use of add-ons in fertility clinics is a misrepresentation of these clinics and a misunderstanding of the data...
23 May 2016 - by Lone Hørlyck 
A number of fertility specialists have raised concerns over private clinics offering expensive 'add-on' treatments to patients, sometimes without sufficient evidence of their effectiveness...

08 December 2014 - by Professor John Galloway 
Although the word was not actually used (or at least I did not hear it), this was a polemic making the case for 'eugenics'...
27 October 2014 - by Sean Byrne 
The National Institute for Health and Care Excellence (NICE) has published a quality standard that aims to bring an end to a 'postcode lottery' in the provision of fertility services on the NHS, which it says is restricting access to treatment....
22 September 2014 - by Rebecca Carr 
Research conducted by the campaign group Fertility Fairness has uncovered significant variations in the amount that NHS Clinical Commissioning Groups are paying for one cycle of IVF treatment....
22 September 2014 - by Vicky Whitehead 
In the UK, clinical commissioners seem to view the national recommendations on fertility treatment as a sort of à-la-carte menu from which they can pick and choose; altering the definition of a cycle, the age requirements, the number of cycles available, and the access criteria at will...
11 August 2014 - by Ari Haque 
A fertility clinic in Manchester has launched a new scheme that will give a refund to patients who fail to have a baby after undertaking IVF treatment...

HAVE YOUR SAY
STOP BROKERING BLACK MARKET ADOPTIONS AS FERTILITY TREATMENT (BioVisitor - Updated on 14/01/2015)
Medical professionals are helping people skip the normal checks and balances of court approved adoption or guardianship by brokering black market adoptions and calling it a fertility treatment.  If someone is bringing home another person's offspring to raise without a formal court approved guardianship or adoption it's not because their doctor treated their infertility it's because their doctor brokered a black market adoption with a gamete donor who agreed to do a whole lot more than just donate their gametes or embryos.

We need laws require all gamete and embryo donation agreements to strictly prohibit the recipient of the donated gametes or embryos from attempting any treatment that would result in the birth of the gamete donor's offspring and in the event that the gamete donors offspring are born either by mistake or fraud on the part of the recipient that the recipient shall under no circumstances have any legal right to be named as the parent of the gamete donors offspring nor shall any other person have a legal right to be named as a legal parent of the gamete donor's offspring unless they are the other bio parent of the gamete donor's offspring.  We need laws that would strip medical professionals of their licenses for brokering or facilitating any arrangements that involve the promise of a person not to take parental responsibility for their owon offspring or for brokering or facilitating any arrangement where a person might be named as a parent on a birth certificate of another person's offspring.  

We don't want for doctors to pick and choose who deserves medical treatment and who does not but they certainly should not be setting up arrangements where people can have custody of another person's child without having to go to through all the checks and balances of court approved guardianship or adoption.  Medical professionals are helping people skip steps that protect minors from being trafficked by their bio parents into adoptive situations off the record and they are doing it by telling everyone that they are treating people with donor gametes when they are not at all.

Everyone born was conceived by his or her biological parents - the couple who reproduced is the woman whose egg was fertilized and the man whose sperm fertilized the egg.  Doctors are helping fertile people conceive their children through artificial insemination and through IVF.  If a person conceives with fertility treatment they were never actually infertile.  Fertility treatments can speed the conception process up for fertile people.  But a donated embryo or gamete does not help infertile people reproduce or conceive it just helps them conceal the adoptive nature of their relationship with another person's child by having everyone agree to lie and conceal information in advance so that when a person is born the truth of who their parents actually are is never recorded giving rise to an opportunity for someone else to enter their name on that person's birth certificate and essentially skip all the procedures that protect minors from being sold, trafficked into adoptive situations by their bio parents.

Until the laws change to clearly state that medical professionals shall not broker, arrange, facilitate or otherwise involve themselves or their practice with individuals who have promised not to take parental responsibility for their own offspring, medical professionals will have to do their own lipmus test to determine if they are involving themselves in black market adoptive arrangements - so take this example of a true gamete donation agreement that does not allow for the creation of the donors offspring nor does the donor does not agree to abandon parental responsibilities for his/her own offspring.  The agreement limits the donation to the gamete and gamete only and does not extend to the custody or control of any embryos or children that might mistakenly or fraudulently be created/born.

http://hesc.stanford.edu/donations/2-%20Stanford%20IVF%20Sperm%20Research%20Consent%20-Sept%202014.pdf

If anything besides a gamete for the gamete sake is promised or implied in the terms of the agreement - it's not a gamete donation agreement, it's just a black market adoption arrangement with a thinly veiled cover as fertility treatment.

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Published by the Progress Educational Trust

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Professor Robin Lovell-Badge

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Professor Richard Anderson

Dr Elizabeth Garner

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Dr Anna Smajdor

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Vivienne Parry

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Fiona Fox

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