# Changes to embryos Bill urged



## DizziSquirrel (Feb 15, 2005)

http://uk.news.yahoo.com/pressass/20070801/tuk-changes-to-embryos-bill-urged-6323e80.html
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## drownedgirl (Nov 12, 2006)

and

http://news.bbc.co.uk/1/hi/health/6924615.stm

says more about controversy over the donor conception/birth cert issue

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## Klingon Princess (May 10, 2007)

I saw this yesterday.  DH came home in a right old temper after hearing it on the radio. while I do think the child has a right to know, the rest of the world does not.

The birth certificant is a public document and this law would mean that every time the child has to do something like open a bank account, apply for a passport or driving licence or any one of a hundred things that require ID, they are basically telling everyone they are donor conceived.  Surely this is taking away the child's right to privacy.

So, my question is, what are we going to do about it?

Kehlan


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## drownedgirl (Nov 12, 2006)

I have just written to my MP
- its easy to do, here

http://www.writetothem.com/

Dear xx

Human Tissue and Embryos Bill

Having read this news report http://news.bbc.co.uk/1/hi/health/6924615.stm

I am concerned on three counts. Firstly, that the HFEA is a discredited organisation, that despite being funded by the money of fertility patients, does little to provide real support for our interests and wastes its time on vendettas against individual clinicians such as the ARGC. Its clear intent is to make Single Embryo Transfer mandatory, without fighting for a real increase in NHS resources to make this feasible.

Secondly, that emphasis on the need for an IVF baby to have "a legal father" delegitimises single parent and lesbian families, both new and existing.

Thirdly that the suggestion that donor conception be identified on birth certificates has been ill thought out. Personally I support openness in these matters but I feel it is not a matter for public announcement. A family should be able to decide when and how to tell a child, and not have this information available to all and sundry without their consent - when applying for a school place, for example.

Furthermore, I fear that if this clause was passed, it would become illegal for families to go abroad for donor eggs, as most do, due to a shortage in this country. Allowing increased recompense to UK donors would be a better way to shift the balance back to domestic donation, where anonymity has already been removed. If this is an attempt to prevent donor treatment abroad, by the back door, the bill should be upfront about the implications. With such limitations on NHS fertility treatment, and such high costs for private treatment, many women are forced into the donor route as IVF is not available to them before their fertility starts to decline even further.

I look forward to hearing your views on this matter, and you voting in support of the interests of the many infertile people in the UK.

Yours sincerely,

xx

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## drownedgirl (Nov 12, 2006)

Kehlan said:


> The birth certificant is a public document and this law would mean that every time the child has to do something like open a bank account, apply for a passport or driving licence or any one of a hundred things that require ID, they are basically telling everyone they are donor conceived. Surely this is taking away the child's right to privacy.


I think it will be like adoption where only the long birth cert has the info on - the short birth cert is used for most purposes and has only brief info on. But, still.


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## drownedgirl (Nov 12, 2006)

This was in the bill http://news.bbc.co.uk/1/hi/health/6175501.stm but looks like it might come out

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## Tillyp (Apr 26, 2005)

Yet again its pick on the TTCers! Do the government not have more important pressing issues to sort out


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## Lorna (Apr 8, 2004)

The government has many organisations with extreme views, not just BAAF, but also organisations like the Christian Medical fellowship.  The CMF would like to jail people who have the “wrong kind” of treatment, abroad.  We did surrogacy in the US, so they would like us sent to jail.
I sometimes wonder, whether the government, deliberatley puts out these stories, about extreme measures.  They know there will be a public outcry, and they can drop the outrageous things, and slip in the many lesser controls on our life.  We are so busy protesting about the excesses, people tend to ignore, all the other unnecessary controls on our reproductive lives.
While this story is going out, how many of you are jumping up and asking why are there any controls at all.  There aren’t any for any other branch of medicine, including advanced cancer treatments, or gene therapy, but there is on IVF.  The first IVF cycle was done 30 years ago!

Just some random thoughts,

Lorna


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## olivia m (Jun 24, 2004)

Hi All
Donor conceived adult David Gollancz has written very thoughtfully in G2 in The Guardian today. Recommended reading for a different point of view that deserves taking notice of. 
http://www.guardian.co.uk/g2/story/0,,2139678,00.html

Olivia

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## Morvern (May 16, 2005)

There was another article in The Guardian today by the head of science and ethics at the BMA. It is entitled 'More than a gene pool' and is very balanced:

http://www.guardian.co.uk/comment/story/0,,2139591,00.html


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## Lorna (Apr 8, 2004)

David Gollancz is very passionate, but, IMO, recording the name of the donor on the birth certificate is not the right way to go about it.

he says
>No one is entitled deliberately to deceive other people, or deprive them of 
>essential information, about their personal history. Our stories belong to us and 
>we are entitled to the truth

Years ago, when DNA testing became possible, a study was started to look at genetically inherited diseases.  When a child came into hospital, and the hospital took blood, the study ran tests on the left over blood.  The study organisers asked the parents, if they would mind giving blood as well, and the study organisers could look at how genes, and genetic diseases were passed from parent to child.  Great idea, but with one major flaw - huge numbers of children, were not living with their biological dad.  Something like 30% of all children tested.
The study was abandoned, because it was felt that harm would be done to families, if this information came out.  If dad, who was living in blissful ignorance of the fact, that one of his 3 children wasn’t his, ie if dad found out little Johnny, or little Jenny wasn’t his, he would more than likely leave file for divorce, and the effects on the children would be horrific.
If the researchers stayed quiet, Dad would happily go on living with his family, and die a happily married, well loved father and a contented old man.  The damage done by revealing who was the “true” father would be so awful, the researchers felt they couldn’t continue, and so the study was abandoned.

If you take this study, there are millions of naturally conceived people in this country, whose “dad” isn’t their biological father.  Telling them the truth would probably do more harm than good.  The older I get the more I think truth is overrated.  I have seen to many situations, where enormous damage would be done, by revealing the truth 


There was another study, done where researchers looked at all people with the same name, let’s think up a name – Whitelaw.  On a small scale, they found all boys with the same name Whitelaw, had the same, historical, biological DNA from the father, from somewhere in prehistory..  When they scaled this study up, they found there were an awful lot of Whitelaws, didn’t have, the common DNA from the father.
There are actually some very, very good, evolutionary reasons, why it is a good idea, to have children born into a family, where “dad” is not their biological father.  So if you take this study, wives have been having children not conceived by their husbands for a very long time.

Let’s look at David Gollancz story.  He was told, when he was 12, back in 1965.  That is 40 years ago.  We know from adoption , that children who are told at a young age, in a loving environment are able to absorb the information, and form positive images of themselves.  But people, back then probably didn’t know any better.  And there is the issue of how accepted was sperm donation in the 1950’s
So, what was adoption like 40 years ago?  As open as it is now, or have things moved on since then.  IMO, comparing how sperm donation was done 50 years ago, with the modern day is a red herring.

But I do think David Gollancz is right 
>Human beings are storytellers
Parents need to be able to tell their donor conceived children, stories about the special person who made them possible.  The child needs images, pictures of the donor.  What can parents do now?  They can tell their child they were conceived with the help of donor, but by the way, we can’t tell you anything else till you turn 18.  What a mess!
And if you think modern day adoption should be used as the standard for donation; as far as I am aware the adoptive parents gets lots of info on the birth mother, which the parents can let the children know about, as and when it is appropriate.  I believe that parents who adopt older children, are required to arrange for the child to meet their birth mother/family on a regular basis.
But children of donation, must wait till they are 18, before being given any info.  Bizarre.
I can’t believe that anyone is capable of designing such an appalling way of doing things.  It’s insane.
And then we have the rights of the naturally conceived children of the donor.  IMO, they too have a right to know about their half siblings.

What is my suggestion?  Firstly, I think we should stop interfering in parents lives.  We shouldn't force parents of donor conceived children to tell their offspring.  Encourage yes.  Hold a gun to their heads no.  You don’t know what the family situation is.  Children born into deeply religious families, might be stigmatised, by their relatives.
And as you can’t possibly “know” about every family, so trying to force a one size fits all solution on parents of donor conceived children, is bound to do some harm.  IMO, probably more harm than good.

IMO, what should we be doing, is encouraging, open donation, where intended parents gets lots of info on the donor, and the chance to meet their sperm or egg donor.  I think it also addresses not just the issue of telling the donor conceived children of their biological heritage, but also the rights, of the naturally conceived children of the donor.

Ok you don’t like my suggestion.  Tell me why it is wrong and come up with a better way of doing things.  But let’s drop this badly thought out, sledge hammer to crack a nut suggestion, of putting the donor’s name on the certificate.

Lorna

PS I still think it was mooted to distract us from the real things we should worry about, like why is there any regulation of this field in the first place.


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## Lorna (Apr 8, 2004)

keep saying that "I think these things are put out, to distract us from asking, "Should there any regulation of this field in the first place?"
If we look at the field of medicine, every aspect of it is covered by some regulatory body or other It could be a professional organisation covering standards of treatment, like the BMA, or the Royal College of Nursing. Or it could be the Healthcare Commission, which inspects all medical facilitates, whether it is a hospital, doctor's surgery, pharmacy, whatever, *EXCEPT* for IVF clinics. Why?
It is very expensive for an IVF clinic to have the HFEA inspect them. We are talking about how an IVF clinic, probably has to pay the HFEA the same amount for an inspection, as a medium sized hospital would pay the Healthcare Commission, for one. And unlike the Healthcare Commission, the HFEA has no statutory duty to improve things, so it doesn't matter that we are 17th out of 23 European countries, and still sliding down the league tables.
So it is not necessary for the HFEA to oversee medical practices, because there is already another body doing that job.

The HFEA also advises clinics on best practice, like how many embryos to transfer. But surely that is a decision, that should be taken by a doctor, in consultation with a patient. Point 40 http://www.publications.parliament.uk/pa/cm200405/cmselect/cmsctech/7/702.htm talks about risk, about the level of risk a patient can chose to be exposed to. They looked at whether the risks associated with infertility treatment is so high, that the government must intervene, and prevent someone from making a decision, that might result in their death. And in their opinion, none of the risks, associated with assisted conception, fall outside the level of risk, that a person is allowed to assume. Therefore there is no reason for the HFEA to interfere
But let's look at risks from a different angle. In the UK, doctors try to avoid giving a patient a general anaesthetic, because it is so risky. Well, when you start looking at the risks associated with assisted conception; IVF is at least, if not slightly more risky than general anaesthesia. So shouldn't the HFEA's main priority being how to minimise the number of IVF cycles a woman goes through? In which case, shouldn't 5 embryo transfer be the norm, for women over 42?

Another of the HFEA's jobs, is to rule on the ethics of new treatments. This may have been necessary back in 1990, when medical ethic committees were few and far between, but not any more, when, now, every organisation has one. Point 333 of 
http://www.publications.parliament.uk/pa/cm200405/cmselect/cmsctech/7/710.htm

So I don't see the need for an HFEA committee, considering everything they do, could be done more effectively, and at lower cost by other, existing organisations.

BUT... I hear cries of; "Infertility is a special area of medicine. It needs special regulations."
Let's look at this, again from a different angle. Before you call me a racist, please read through to the end of this section.
Something like, 20 years ago there was a big hullabaloo about how many more black youths were committing crime, than white youths. I think, this all happened in the USA.
Special commissions were set up, special programs were created to try to encourage back youths into more constructive activities, millions, and millions were poured into this area. There was a positive feed back affect, and not only was a whole industry created, but it got larger as larger, as people tried to control, the tidal wave of back crime. Many people has wonderful careers heading up commissions, looking into, how to reduce the amount of crime committed, by out of control back youths.
No one dared question, what was going on, because everyone knew that special measures, and special regulations were needed.
And one day, it all began to unravel. Someone asked, how many police officers, at any one time, do you have patrolling a predominately white area, of say 50,000 people? Answer 10.
And 
How many police officers, at any one time, do you have patrolling a predominately black area, of say 50,000 people? Answer 20-40
The next question was: Could this be why 2 to 4 times as many black youths are arrested as white youths?
Many more questions were asked, and eventually, it became clear, that a black youth was no more likely to commit a crime, than a white youth. Other social issues, did have a big effect on crime, but colour of the skin was definitely not one.

I think we have done the same thing with infertility. IVF isn't anything special, but by passing the Surrogacy Act 1985, the HFEA Act 1990, etc., and by setting up the HFEA committee, we have singled infertility treatment out, and made it special. We have created a self perpetuating loop, that makes people believe, that because there are controls, that we need to have controls, when, in fact we don't.
What we do need is strong business laws, like we have for every other industry, coupled with contracts, and conflict resolution systems, like OFIVF, or special low cost, confidential court systems, as they do in the US. We definitely do not need the RATE laws.

Do I think it will happen? No. There are too many vested interest in making things continue as they are.
Let's talk about Quangos, like the HFEA committee.
Am I the only one or has anyone else noticed, that once someone is on one Quango, if they behave, they get to invited to join another Quango, then another, usually more lucrative ones. Lay members of the HFEA committee are quite poorly compensated, at around 180 pounds per day, plus expenses. If a member of a Quango misbehaves, they will booted off, at the first opportunity, and never be allowed, ever again, to sit on any special committees, investigating something or other. Quite a loss of income!
Anyone else noticed how, if a lay person is on several Quangos, then they will probably be, Chair of one. Or how chairs of Quangos move around. Look at how previous Chairs of the HFEA (40,000 a year plus expenses plus civil service pension), move on to be Chief Charity Commission (60,000 a year plus expenses plus senior civil service pension). Low paid Chairs of Quangos, like the HFEA are part time positions, which leaves you free, to join other Quangos. And so earn more money? Oh I forgot, people generously give up their valuable time to tackle such thorny issues. as infertility. They do it out of a sense of duty, not because you can earn anything from 20,000, to 50,000 a year, doing a part time job!
Do really well; and you might get offered the full time job of the Chair of the Environment Agency, who earns 160,000 pounds a year, plus expenses, plus senior civil service pension, plus, because they were doing such good a good job of controlling flooding, last year, they got a bonus of 27,000 pounds as well.
Now if it was my well paid, often part time job, that was threatened, I think I would be fighting tooth and nail to keep things as they are. Do you think members of the Quangos are to be any different?
So when I say, "I think these things, were put out, to distract us from asking, should there be any regulation of this field in the first place?", I believe that part of the reason, why the suggestion that a donor's name should be on a birth certificate, was floated: was to distract us from asking fundamental questions. like what sort of regulation we need in the first place. We might just decide, we would be better off without any!
And that would never do.
Lorna


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## caz24 (Nov 25, 2004)

hiya

it's not fair were all having a tough enough time already!!! without them making it worse bet they'll be even less egg doners now.


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## drownedgirl (Nov 12, 2006)

My MP got me a reply from Alan Johnson which does actually respond to my points, rather than being a standard letter.

He has responded that the govt is funding the Infertility Network UK to work with PCTs to improve equitable access to IVF, that the govt proposed the removal of the "need for a father" but is considering response of the scrutiny committee, which disagreed, and is proposing recognition of legal parenthood after ART be extended to cover same sex and civil partnerships, they are considering the scrutiny committee's reccommendation that birth certificates show donor conception, the re are no plans to make it illegal to travel abroad for donor eggs, and they are reviewing compensation for egg donors in the UK.

It's worth writing to your mp on matters of interest, an individual letter from a constituent to the MP, passed to the DOH, does have some weight.

You can write to your mp easily online: www.WriteToThem.com

This post contains an unconfirmed link/information and readers are reminded that FertilityFriends.co.uk or its owners are not responsible for the content of external internet sites


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