# Regulation and integrity of Overseas Clinic for Quality of Eggs



## Idaho (Oct 16, 2008)

Hi!

For overseas clinic, who actually monitors the quality of the matching of the egg.  Basically, you are shopping "blind".  You have to trust the clinic to give you what you "think" you are getting and to have integrity in the "matching" process.  They say that the donors are of such and such, but how do you really know.

I am thinking of donor egg after many failed attempts at having my own baby.  These are just some thought that has come across my mind when considering donor egg.  Am I crazy for questioning integrity of these oversea clinic when so many people are doing it and raves about them?

Any information/advise and thoughts are greatly appreciated.

Thanks


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## Mandy42 (Mar 26, 2004)

Hi

I am not aware who regulates overseas clinics.  I think you have to do your own research and trust your instict when you visit the clinic.  As to matching, I can only go from my experiences in Spain and reassure you that both my DD and DS look very like my naturally conceived daughter (who looks like me).

Mandy


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## olivia m (Jun 24, 2004)

Legislation and regulation of overseas clinics shows a very mixed picture.  Only some states in Australia, New Zealand and now Canada have regulatory authorities similar to the HFEA.  Spain has been saying for some years that they were going to set one up but it has not happened.  Clinics in Europe are supposed to be conforming to the European Human Tissue Directive but in practice very few have taken the steps necessary to comply, unlike UK clinics which are all compliant.  In practice, matching donor and recipient have to be a matter of trust anywhere in the world.  What is scandalous about (at least some) Spanish clinics is that they rarely give more information than blood group and age about a donor.  They do not even give nationality and in order to match to lighter complexions than typically found in Spain, they use donors from many different nationalities.  This puts a child at a potentially significant disadvantage to one conceived in the UK, USA or South Africa, to name but a few places.  
Olivia


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## Lorna (Apr 8, 2004)

Olivia,

I am curious where you get your information from.  Is it possible for you produce sources, that say that few European clinics follow the EU tissues directive.  Which countries are the worst/best?  Which clinics and so on?  I would love to read this sort of information, well when I can find if the time.

Most posters on treatment abroad, are very positive about their experiences, and rate their clinics as giving excellent treatment, better than their experiences in the UK.

>In practice, matching donor and recipient have to be a matter of trust anywhere in the world. 
Some UK clinics fall sort of the level of trust and integrity they should have. There is the odd case, where a clinic takes the 400 pound finders fee from a potential recipient, and then says a year later sorry, we can't find one, here is your money back.  That is appalling behaviour, IMO.  So at least, if Idaho goes abroad, she will get a get a donor. 

Lorna

> Legislation and regulation of overseas clinics shows a very mixed picture.  
> Only some states in Australia, New Zealand and now Canada have regulatory authorities similar to the HFEA.

Who on earth would want to live in a country that is unfortunate to have one?  The facts speak for themselves.  Countries, which don't have an HFEA organisation in charge, like Belgium, and Finland are at the top of league tables of success.  If you want to get pregnant go to those countries, avoid the UK, which is lounging near the bottom of the tables.  Things like the March 2005 report form the government's Science and Technology committee spoke about low inspection levels, and I, personally, have concerns, about whether the HFEA has fixed the problems. I have not seen an independent report on HFEA inspections.  And the UK is the most expensive place in Europe to have treatment.


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## olivia m (Jun 24, 2004)

Lorna
Unfortunately there are no formal lists of which clinics are registered under EU Tissue Directive or not. It is up to each EU country to require their clinics to conform and as most countries do not have regulatory authorities or show any particular urgency about legislating in this area, clinics have little incentive to get themselves registered.
I quite agree that clinics abroad have much to teach UK clinics about quality of environment, good communication and friendliness of approach, but I think their success rates should be treated with caution.  As there is no official body overseeing their criteria or how their figures are reached, how can anyone verify their success rate claims.
I am not an apologist for the HFEA and nor do I think that the UK system is in any way perfect, but I do believe that we are lucky to have the regulation we do and particularly to have a body that considers the ethical aspects of donation from the perspective of all stakeholders...particularly the children conceived.
Olivia


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## Idaho (Oct 16, 2008)

Dear Ladies (Mandy, Lorna and Olivia),

Thank you so much for your information, thoughts and feedback.  

I agree that "trust" with your clinic is important but after looking more and more into egg donation (in European countries and in Asia), I can help but think that because there is so much money to be made in the fertility business that clinic just give want to have a transaction and may not be scrupulous in their dealings.

I would love to hear women who have had egg donation and know how their DD or DS look like them.  

Thanks again!


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## Lynn E (Aug 7, 2008)

Well said Lorna,

I wish in the UK more could be done about people wanting to use donors eggs. GP/Consultants don't encourage people to go aboard because (A) it is in their interest to have the treatment done here, don't forget fertility treatment is a growing industry and (B) because they are very much aware of the  lack of regulatory bodies, aboard. What we need to see is more collaborative working in the UK and overseas for people wanting fertility treatment aboard. 

I am having to go to South Africa in Nov for IVF treatment using donor eggs because when I asked my consultant in the UK about finding a suitable black/mixed donor in the UK, I was told forget it, as I am likely to reach menopause by the time I am found a donor. So what are people like myself suppose to do, the HFEA needs to wake up!! There are more and more people going aboard, at risk to get the treatment they want. More and more people are having to go aboard at their own risk because they can't get the treatment in the UK. 

Lynn E


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## olivia m (Jun 24, 2004)

Lynn
Interestingly enough, our experience is that many consultants (in the private clinics) actually encourage people to go abroad, giving the untrue impression that egg donation is not available in the UK at all.
Many have tie-ups with clinics in Spain or Cyprus (for instance) and clearly find it easier (and possibly more lucrative) to use these links rather than put themselves out to recruit donors in the UK.
Just as a matter of information, the HFEA are not responsible for the recruitment of donors - this just doesn't come under their remit - so they cannot be blamed for the shortage of donors.  
The government does fund the National Gamete Donation Trust to encourage the recruitment of donors but the amount of money allocated to them is too small for them to run nationally effective campaigns.  It is really down to individual clinics and they (the private ones anyway) are failing their patients by not using some of their massive profits to recruit donors.
Olivia


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## Lynn E (Aug 7, 2008)

Olivia,

Are you in receipt of direct funding from the HFEA? Because the way you are talking it's seem that you are missing the point of why people are having to go aboard in the first place when the treatment should be made available in the UK, especially for people looking from donors from wider ethnic group. People are forced to go aboard because of the lack of choice, I think HFEA can do more in raising problem. And it's really nice to learn that those who have the money are given advice to go aboard why would they not be....since they are paying. 

Lynn E


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## olivia m (Jun 24, 2004)

Lynn
Of course more treatment should be available in the UK and I totally support your point about provision for wider ethnic groups.  I was just trying to point out that it is the doctors/clinics who are letting patients down not the HFEA. The Department of Health for providing only miserable funds for NGDT and the National Institute for Clinical Evidence (NICE) for not making sure that at least three cycles of IVF are available on the NHS, are also partly responsible. Of course we are not funded by the HFEA, but it is part of our job at DCN to understand what they can influence and what they cannot.  We lobby them hard to improve in areas within their regulatory remit but recruitment of donors is outside of their power.
Very best of luck with your treatment in SA.  I was in Cape Town only last week and had talks with a representative from an egg donation agency that operates there.  The service seems like a good one that respects donors and recipients alike...but as you say, very sad that you are having to go so far to get what you need.
Olivia


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## Lorna (Apr 8, 2004)

I have been away, so I have taken a while to get back.

Returning to the original question posed by Idaho.  Unless you go to somewhere like California, possibly Arkansas or Texas as well, you will be unable to get any concrete reassurances about your donor.  Woolly words, but no absolute proof your donor/clinic is above board.  And that applies to UK clinics/donors too.  The overwhelming majority are worthy of your trust, but there is nothing you can do about the wrong ‘uns

In somewhere like California, you can go to an agency, which will have years of vetting donors, and select a donor.  IMO, all donors in the US are known donors, it is just a case of meet (known) or not meet (anonymous).  An agency will run background checks on your donor, but what you also have to realise is, that they will run background checks on you as well.

And also in somewhere, like California, the law is so clear, that when problems occur, it is quickly and effectively sorted out.  In somewhere like the UK, you have no come back against the clinic/donor, if they muck you around.  Remember the story of the clinic that took a 400 pound finders fee, and then sometime later said, you are not a suitable recipient, here is your money back.  In the UK, the potential recipient has no way to get any compensation for her shattered dreams.  In California, she could sue the pants off, any clinic, that behaved in such a disgraceful way.

Anytime I hear a story of something dreadful happening, I think, well it can’t happen in California.  Well it can, but the perpetrators, would find themselves in serious dodo, and face possible jail time.  The laws in California, are so clear, so precise, and the penalties equally clearly laid out, that everyone knows exactly where they stand.  And if a case comes to court, *everything* is done to keep any information out of the press.  In California, the prevailing view is, that it would be unhealthy, in 20 years time, for a child who was at the centre of a contested case, to know the details of an acrimonious fight.  

In the UK, the only choice anyone has, is to go to the newspapers.  There is no way for the little people, you and me, to get justice.  The law in the UK is such a mess, even barristers can’t tell you which way a case will go, until the high court rules.  That is appalling.

Olivia M says 
>  In practice, matching donor and recipient have to be a matter of trust anywhere 
> in the world.
Well we know how well trust works!  Trust works so well between employers and employees, that is why we have compulsory contracts of employments.  Trust works so well between shops and customers, that is why we have sales contracts.  Trust works so d****d well that is why in *every*, and I mean *every* other aspect of our lives, except for infertility treatment, contracts are not only very, very strongly advised, but mandated by the laws of the United Kingdom.  For infertility, contracts are outlawed.  Why?

Olivia M says 
>  In practice, matching donor and recipient have to be a matter of trust anywhere 
> in the world.

Anywhere in the world?  Well in California, and in other states, yes you do work on trust, but it is backed up by a cast iron, legal contract, very clear laws, and both sides can do background checks on each other.  That is considered normal in California.  Considering how well trust has been seen to work, I think it is disgraceful, that donors, surrogates, recipients, intended parents, and so on, don’t get the same kind of legal protection in the UK, that some in the US gets.  What does it say about our so called “advanced” nation!

So Idaho, outside the US, there is no way for you  to be able to, personally, select the best donor for you – and the best donor for you is not the best donor for me, as we different people - and neither can one side thoroughly check out the other side.

Lorna


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## Lorna (Apr 8, 2004)

I felt another post on some of Olivia's other comments was also required. IMO, your post could have been written by the HFEA.

Olivia also stated that:
>>Clinics in Europe are supposed to be conforming to the European Human Tissue
>> Directive but in practice very few have taken the steps necessary to comply, 
>> unlike UK clinics which are all compliant.

This looks to me like, belief stated as fact. Let's look at the HFEA's record. They have been telling us for years what a fantastic job they have been doing, but when an independent report came out - government's Science and Technology committee published in March 2005 - we find out that the HFEA hadn't been doing such great a job.

The HFEA is an organisation, that writes the rules, inspects clinics, and decides who has, and who has not infringed the rules. They are also the ones who decide, if disciplinary actions need to be taken. And that hasn't changed, since before or after the report.

The above report questioned the quality of the rules the HFEA write, the way they inspect, and who is or isn't disciplined. Not much left is there?

Let's take the rules the HFEA write. When the EU tissue directive was released, the HFEA had to *RAISE* the standards that clinics were required to follow.

This report commented, that on several occasions, that the HFEA's inspection procedures fell short of the high standard we should expect of them. Also, even when the HFEA did a great job, it would often allow clinics with quite major failings, to continue to operate. In fact it came as no surprise to the government's Science and Technology committee, that something like the black twins born to white parents occurred.

So how come some clinics were allowed to continue to operate, even though standards were below par? Anyone?

On the other hand, if we read newspaper reports from the same period, we can see that doctors who criticised the HFEA would land up being hauled over the coals, for quite minor infringements of the rules.

And we know from things like the Panorama program, on Mr Taranissi, that if someone criticises the HFEA, today, they will prosecute them for quite minor infringements of the rules. Yet some clinics can charge 400 pounds to find a recipient an egg donor. If I set up an agency to find egg donors, and I charged 400 pounds to find a recipient a donor, I suspect the HFEA would prosecute me, to the full extent of the law, and I would end up in jail. But the HFEA doesn't prosecute the directors of the clinics who charge 400 pounds to find a recipient an egg donor. Is that because those directors appear on the same platform as the HFEA, and say what a fantastic job the HFEA is doing? Or is there some other reason?

The HFEA has spent the last 18 years telling us what a fantastic job it is doing. How we are safe, because they make sure everybody operates to the highest standards. But, IMO, when you look at the HFEA's behaviour, nothing much seems to have changed, and yet Olivia, you want to believe that all UK clinics operate to the EU tissue directive. Personally having read, and read about infertility in the UK, and for a while it was everything I could lay my hands on, I find it very difficult to believe that the HFEA has got it act together. Having said that the HFEA's behaviour hasn't changed, actually, I think, it has got worse. They didn't get prosecuted for unlawful behaviour pre March 2005!

Getting back to the HFEA's inspection process, after the black twins born to the white couple, the HFEA then said, they needed to revamp their inspection process, as clearly it wasn't good enough. Well they had been telling us for years it was wonderful what they did!. Had they been lying?

But to revamp their inspection procedures they needed more money. They did this by increasing their funding from 2.5 million to over 10 million, mostly by increasing fees, which were passed onto the patient. You all know about that 103 pound fee you have to pay to "monitor" your cycle. Patients pay a huge chunk of the HFEA's budget, and the HFEA, under the HFEA Act 1990, has *NO* legal responsibility for us. I keep trying to find out *exactly* how many patients suffer complications while undergoing treatment, but can't. It isn't the HFEA's responsibility to track such information, in fact it appears to be no one's.

Pre March 2005, the HFEA put in place its current system, which more than quadrupled its budget. In April 2006, every country in Europe was supposed to conform to the EU tissue directive, but the HFEA pleaded for more time, and didn't agree to conform to the directive till a year later, April 2007. The HFEA was always telling us what a fantastic job it does, and it had all that extra money, why didn't they meet the deadline?

And just to add insult to industry, the government's Science and Technology committee, thought the HFEA's basic budget (2.5 million) was sufficient to do all they were legally required to do. Unfortunately they liked (like) doing (playing at) other things, that is why they had to increase their budget. The committee implied, that if the HFEA just did what the law required them to do, they wouldn't need all that extra funding.

People on this board, you do know that every time they pay for a fresh cycle of IVF, hundreds of pounds of that fee is being used to support the HFEA, I reckon at least 250 pounds.

This report, also commented that the cost of an inspection, of an NHS facility was many times cheaper than an inspection of an infertility clinic done by the HFEA. The report chose NHS organisations, that were of a similar size to an infertility clinic. And the report was looking at fees pre the black twins born to the white couple.

If all inspections of infertility clinics were done by the NHS, it would also be done by an organisation that is required by law to be constantly improving things. The HFEA has no such legal responsibility. And under the NHS, one person writes the rules, another inspects, and yet another (in fact many different organisations) discipline. It isn't one organisation who decides whose life is made, and whose life is not made, H***.

Maybe it is just me, but is seems crazy that a clean room in the NHS is inspected by one organisation, and to one set of rules, and a clean room in an infertility clinic is inspected, by a different organisation possibly to a different set of rules.

So having considered the evidence, I believe that if inspections of all infertility clinics were done by organisations that do the NHS inspections, inspection fees would fall and standards would rise. And the fees you pay to infertility clinics for a cycle of treatment would come down, by at least a couple of hundred pounds. But that is just my opinion.

I am trying to separate out, what I believe to be true, and statements I make that can be backed up by evidence, an independent report, a paper published in a peer review journal, and so on.

Olivia says:
>>Clinics in Europe are supposed to be conforming to the European Human Tissue
>> Directive but in practice very few have taken the steps necessary to comply, 
>> unlike UK clinics which are all compliant.

Olivia, you say that, the HFEA has inspected all UK clinics to the EU Tissue Directive. You have not produced any independent evidence for such a statement, so IMO, you have stated your belief. Well considering, the past behaviour of the HFEA, is any wonder that I want an independent report, to show me that what you are saying is true!

You also say that very few clinics in Europe conform to the EU tissue Directive, but you don't have an independent report to back that up. Again it strikes me, that you are quoting your belief.

You admit 
> there formal lists of which clinics are registered under EU Tissue Directive or not.
You have *no* independent report to back up your statement. Did you take the word of some on the HFEA committee member? Well we know how trustworthy their statements are? Don't we?

So how can we know if the UK clinics conform or not, particularly given the past and present behaviour of the HFEA.

I actually don't expect all European clinics to conform, but I do expect clinics that fertility friends patients use. What am I talking about is Leuven, Spanish clinics, Isidia, even Altra Vita(OK non European).

I also expect some of the lesser clinics in countries right at the bottom of the league tables, to not conform. What do I mean, some of the former eastern block countries, whose countries were plundered by the ruling classes may well not conform, but I also don't expect FFs to go there for treatment.

Moving on
> I quite agree that clinics abroad have much to teach UK clinics about quality of 
> environment, good communication and friendliness of approach, but I think 
> their success rates should be treated with caution.

The statement 
> their success rates should be treated with caution. 
What a piece of disinformation. What do those 8 words actually say? IMO, nothing. I think they imply a whole lot, but they tell us absolutely nothing.

IMO, these words imply, that in the UK clinics successes are under reported and clinics overseas over report their success rates. And if everyone reported their results the same way, then the UK would look like a good place to have infertility treatment.

Let's look at an HFEA press release on the improvement in success rates

http://www.hfea.gov.uk/en/969.html
Between 1 April 2000 and 31 March 2001, 21.8 per cent of IVF treatment cycles resulted in a birth. &#8230;&#8230;&#8230;&#8230;&#8230;&#8230;&#8230;&#8230;&#8230;&#8230;.. This compares with success rates 19.5 per cent for all treatment cycles (for 1998-1999.)

Isn't it great the success rates are improving. Don't you feel good at what the HFEA is doing?

What the HFEA didn't tell you that in the late 1990's/early 2000's the success rates of most other European countries rose by more than 2.3%. Yes our success rates were slowly improving, but in the majority of European countries success rates were rising faster than ours, and in places like Belgium, etc. success rates were going through the roof.
And between somewhere in the mid 1990's, and the early 2000's despite our improvement in success rates, we slipped down the league table of results from 12th to 17th out of 23 countries reporting results.

When I find this sort of thing out, I feel mislead by the HFEA. Deceived even.

6 years ago, I had no particular opinion on the HFEA. To some extent, I believed what they said. Then I started reading anything, and everything to do with infertility. Every time I read something, and compared it with a statement produced by the HFEA, I just couldn't believe the spin they put on what they did. And I was shocked to see the media pick up a story, and publish it without changes, never mind any critical comment.

This statement
> their success rates should be treated with caution. 
IMO, that implies that if UK clinics had the odd % increase in success rates, and other countries had the a few % percentage decrease in results, the UK would be competing with the top countries in the world. And that simply isn't true.

IMO, the UK is so far down the league tables, and countries like Belgium, Finland, Iceland, and so on, are so good, there is not snowball's chance in H**, of the UK, ever making it into the top 3, well not while the HFEA continues to run the show.

Sorry I can only remember trends. A web search, or a search back through my posts (will take a long time) will reveal the details.

But basically, they are 3 or 4 countries at the top of the league tables ( Belgium, Finland, Iceland, A N other?). These countries are so far out in front, they have already completed the 100 metre sprint race, before any other country has got off the starting blocks. These are the countries that HFEA quotes as being the early adopters of eSET. Well a 4% drop in success rates, is real no big deal for countries like these. They are still way out in front of everyone else. So if you want to get pregnant, go to one of these countries.

The country at 4th or 5th in the league tables, is more than 4% below those top 4 countries.

After the country at 4 or 5 in the league tables, you have a big chunk of European countries that are all within a few % of each other. 1% change in reporting will move that country up or down a few places.

Then comes Great Britain, and then you have the countries at the bottom of the league tables. The countries at the bottom of the league table, are so bad, that even with a 4% change in success rates, they will still be at the bottom of the tables.

Great Britain is tending to wards these countries, so a 4% rise in rates will only move us a few places, we will still be out of the top ten countries in Europe.

Why do I talk about a 4% rise/fall in success rates? eSET, decreases the chances of woman getting pregnant by 4%, and for infertility treatment, a 4% change in success rates indicates a meteoric improvement, or a catastrophic fall in success rates. 4% doesn't sound much, but most clinics would kill to have a 4% improvement in figures. Similarly most clinics would commit Hara Kari, if success rates fell by 4%. And eSET has a 4% lower pregnancy rate. And I won't mention the miscarriage rates of eSET!!!

Back in 1978, the UK was number one in the world. Under the guidance of the HFEA, if you consider countries like the US, the far East, the UK is probably now in 21, 22, 23&#8230; something in the world. Why are we so far down the league tables of pregnancy?

So when someone says 
> their success rates should be treated with caution. 
For Great Britain, even if our figures, are slightly under reported - and given the HFEA's way of putting their spin on the data, I doubt the figures are under reported -so even if our figures are slightly under reported, the UK is not going to get into the top ten countries in the world, and we would struggle, IMO, to get into the top twenty countries in the world.

Olivia, you seem to be very pro the HFEA. I have trouble understanding why. Well there is one explanation I can think of. I'll talk about me changing sides. I have always rubbished the decisions made by our school board of governors. I think I can do a much better job, so I have signed up to become a parent governor. Now I am "one of the team", I support every decision the governors make, and have ever made!

The above report did comment, on how when people join the HFEA, they suddenly go from being outspoken critics to their most ardent supporters. Bearing in mind, that most of the members on HFEA committee, *must* by law, know nothing about infertility, joining the HFEA, gives someone who is unqualified an "in" to Quangos. And, IMO, provided you are loyal, and to a lesser extent capable, you can earn a very nice living. How many of us get 40,000 a year for a part time job? Most of us have studied for years, gained masses of experience, work full time, and we still don't make 40,000 a year, but the last time I looked the Chair of the HFEA was getting that kind of salary, for working part time. Great for someone, who by law must know nothing about their job before they start work!

I forgot to mention the Chair of the HFEA also gets, get unlimited expenses, despite restricting expenses to donors! Isn't that one rule for us, and another rule for rest? And they get a civil servants pension. And they get an opportunity to rise up, to much higher levels, and much higher salaries. And so few of them seem to lose their jobs!

Anything I have missed?

Olivia, as you are clearly so pro the HFEA, maybe you can list their successes. And what wonderful things they are going to do for everyone involved in infertility.

My list of achievements for the HFEA are:- 
They have held back the quality of care in the UK,
They have driven up costs
and They have tied everyone up in red tape.

But I am sure, Olivia, you, who so openly support the HFEA, will be able to come with a much more positive list!

Lorna


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## olivia m (Jun 24, 2004)

Well, that must feel better out than in!    You surely don't expect a reasoned response to such bile.
Olivia


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## Lorna (Apr 8, 2004)

Olivia,

I love the way you dismiss what I say as bile, but I have, and can produce independent reports, peer reviewed papers, peer reviewed social studies, accepted business theories, and so on, for most things I post.  And when I can't, I will say, "my belief is", or "my opinion is", or "I think".  I haven't seen you do the same.

I'd love to see, any evidence that you have, that supports your position.

Lorna


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## olivia m (Jun 24, 2004)

Well bully for you Lorna.  It's not me taking positions here, it's you.  I'm perfectly comfortable with my sources of information thank you and feel no need to defend them.  I'm not going to be drawn in.
Olivia


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## shellspain (Oct 29, 2007)

I cant comment of the whole of this thread as Im afraid Im nowhere near as informed as some of you appear to be!. I did just want to say one thing though that is based solely on personal opinion.
Olivia, you say that those children conceived by DE via clinics in Spain,who do not give details such as nationality are at a potential disadvantage?
If you do not wish to tell your child that they were conceived by donor then how is that a disadvantage? 
Surely this is all about *choices*. I think I would tell any DE conceived child I am lucky to have the truth therefore I chose a clinic in Spain where I was given the true nationality of my donor. However if I was adamant I didnt want my child to know of its origins then having very few details would be preferable.

I think the word choices is the key thing here. Its the *lack of choice * in the UK that is one of the major reasons for women choosing to go overseas for treatment.

Shelly


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## olivia m (Jun 24, 2004)

Hi Shelly
This argument has gone round and round on FF before so I'll try not to labour the point, but the law was changed in the UK in order to give CHILDREN a choice whether or not they wanted contact with their donor at 18.  Parents who make the choice not to tell are potentially putting their child and family relationships at risk by putting their own interests first.  It is only in very rare cases that 'not telling' is in the interests of a donor conceived person.
Olivia


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## Lynn E (Aug 7, 2008)

Hi ,

I am glad I not the only who thought that Oliva is soooooooooooooo pro ****. 

Lynn E


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## Pat_JJ (Jun 27, 2008)

This is my first post - I'm sooo angry with some of the comments made here.

It's all very well to talk about patient choice or the right of parents to choose to tell or not tell their child whether they were donor conceived. The problem is that none of the children involved are in any position to make any choices about how they come into the world and none of the people who have expressed (no, demanded) their right to choose to tell or not, appear to have REALLY put themselves in the position of that child. 

When you realise that you don't really look like one of your parents - or indeed anyone from that side of the family - you naturally start to ask questions.  And it's not just looks, but mannerisms and all sorts of other clues. Believe me, no matter how much reassurance you get that 'of course he's your daddy' will remove that feeling that sits in your gut until you know the truth. And once it's known, it can be amazing just how refreshing it can be. The clouds that hung behind every family celebration and photograph slide away so that you can simply enjoy being loved and loving your family. Knowing the lengths to which my parents were willing to go to have a child of their own have been one of the most loving things I have ever discussed with my family. It has brought us so much closer. I only wish I had known it from the start.

As far as anonymity goes, the HFEA is not the bad guy here - the rules simply put donor conceived children on the same footing as adopted children. Is that wrong? For better or worse, the position in this country is that the rights of THE CHILD are uppermost. You, the patient, no matter what, must come second.  As soon as you ask a doctor to become involved in the creation of your family, that person MUST consider the consequences for the result of their work - the child.  No matter how much money, law, contracts, regulators etc are involved.

As for recruitment, it's not the HFEA that recruits is it? Yes, they could do A LOT more (they seem to have managed to get people together for the multiple births campaign) but it's the clinics who are actually doing the recruiting.  And the only national recruitment drive is being run by the NGDT whose TOTAL INCOME last year was £50k - the vast majority of that came from the department of health (see www.charitycommission.gov.uk).  A whopping £250 was given to them in charitable donations. And how much money did the fertility industry make last year...?! What has the british fertility society done to improve recruitment? Nothing. All I've seen is moans from the industry that there are not enough donors. It's clear from the figures re sperm donors that there's a big problem with many clinics not bothering to do recruitment - the NGDT lists 32 clinics that recruit sperm donors.  The HFEA site says 60 odd carry out DI. What on earth are those 30 clinics doing NOT asking for donors?! 

Lorna and Lynn - you're both very vocal about the need for change. Could you use your campaigning talents to help the NGDT and clinics recruit or help shape the new regulations to improve things with the HFEA? At least Olivia is working hard to put the voice of people like me and my family out there, no matter how much you might pour scorn on her well-researched replies. That's your challenge, Lorna and Lynn, should you choose to accept it.

By the way, just in case you feel like throwing more 'accusations' around, I work for a health charity, not the HFEA.  I just happen to have a different opinion.


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## Lynn E (Aug 7, 2008)

Just for a point of record, I frequently take part in HFEA consultation events and focus groups on variest matters and have done so for the past 5 years. And is a member for the Donor Network and very much in the, heart of campaigning - hence the reason for my view. However this does not remove the fact that the HFEA does receive payment from every individual participating fertility treatment and they are a regulatory body and should put pressure on the clinics to do more. It is very unfortunate that people are having to put themselves at risk, having to go aboard and take on issues of anonymity, in certain countries where they don't speak the language and recipients don't want total anonymity. This creates problems later on when parents want to tell their child about were they are from and more about donator. What I have found that anonymous donor aboard is far more cheaper for recipients then those knowing more about their donors - that can't be good for the child. And people are forced to do this because of the cost involved. 

HFEA has spent too many years campaigning on the issue of multiple births, I figure it is because of the cost it has on the NHS. 

And PatJJ, nobody asked to be born. There are many children born into this world not knowing the reason why they were born or not knowing their birth parent, I don't see people getting angry about the parent choice there. My view is I am not in favour of total anonymity through egg donation and wanted to know more about our donor (background/family) and was able to do so by paying more to the agency for this service, not everyone can do this because of the cost involved and the countries rules on anonymity, some donor are not even given the choice of their donors.  How mad it that? You can bring a child into this world but you don't have the choice of it's maker!!!! This is total madness and it very unfortunate that people are having to deal with these issues because of the lack of choice here, this not good for anyone - parent or child. 

My view is shared by many of FF members, on FF as adult we should be able to have a honest and open debate about matters and I find it unhelpful that people don't responsed to questions or debates being on the defensive - as this does not help the cause. 

Good day to you all. 

Lynn E


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## Lynn E (Aug 7, 2008)

Thanks. I hope we did not go on too much!!

Lynn E


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## Lynn E (Aug 7, 2008)

Hi Diva

Is is funny isn't but I am sure Olivia's heart is in the right place..

Take care for now chat with you on the other threads. 

Lynn e


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