Examination of Witnesses (Questions 300
- 319)
WEDNESDAY 30 JUNE 2004
MS SHEENA
YOUNG, MS
SHARON GRIFFITHS
AND MS
TRACEY SAINSBURY
Chairman: Sheena, Tracey and Sharon,
thank you very much indeed for coming. I think you have been listening
to the proceedings and you know how we operate.
Q300 Kate Hoey: What are your views
on people having an absolute right to have a child? Is that something
you think is a right?
Ms Sainsbury: Absolutely. The
majority of the population is able to have a child. Why should
infertile women be prejudiced against?
Q301 Kate Hoey: You all feel that
is a complete and utter right. No matter what they have to do
or go through, they should have the right to have a child.
Ms Young: I work for Infertility
Network UK as well as suffering from infertility at a personal
level. We are asked this very often by the media and by various
other people. I always answer it by saying that I do not think
everyone has the right to have a child, but I do think everyone
has the right to try for a child. That is slightly different.
Q302 Kate Hoey: Do you therefore
think that government should have any involvement in whether they
should have the right or not?
Ms Young: No, I firmly believe
that infertility is an illness and should be treated like any
other illness. The treatments should be made available to couples
to try to have a child. That does not give them the right to have
that child.
Q303 Kate Hoey: The public, the state
generally, should pay as they would in any other illness.
Ms Young: As in any other therapy
area, yes.
Q304 Kate Hoey: Does that go to the
extent of saying also that the state should pay if you decide
if you want a particular sex for a child?
Ms Young: On a personal level,
I have never gone into that, but it would depend on the circumstances.
I totally agree with what Mr and Mrs Masterton said before, that
every individual case should be looked at individually.
Q305 Kate Hoey: Because of your experience
in the network, what do you think is wrong at the moment, if anything,
with the HFEA's way of working?
Ms Young: Personally I do not
think any body is ever perfect, but we do have something to be
proud of in the UK in the HFEA and there will be certain circumstances
where people will not agree with what they have done. On the whole,
we will need to look at how in the UK we are the envy of the rest
of the world because we have the governing body there in the HFEA.
That does not mean to say that everything is right.
Q306 Kate Hoey: You do not think
there is any discrimination within it.
Ms Young: I have never come across
any person within the HFEA who I could say had discriminated.
That is not to say it does not happen, but I have never come across
it personally.
Q307 Kate Hoey: What changes do you
want to see in the way the whole thing is legislated?
Ms Young: I have worked with people
from the HFEA, but I have never been a member of HFEA, so I do
not know what happens within the HFEA, only the basics of what
they do. Yes, I do think that these things need to take place
and the reviews need to happen We need to keep firmly in our mind
that we are the envy of the whole of the world and that there
does need to be legislation.
Q308 Geraldine Smith: On the point
you make about everyone having the right to have a child, I am
afraid I do not quite share your views on that.
Ms Young: That is not what I said.
Q309 Geraldine Smith: There are circumstances,
if you have, say, a 48 year-old single woman on her own, who may
have some life-threatening condition, where she might only have
five years to live. Does that woman have a right to have a child?
Ms Young: I never said anyone
had a right to have a child. I said that everyone had the right
to try to have a child.
Q310 Chairman: Tracey was the one
who said that.
Ms Sainsbury: Yes.
Q311 Geraldine Smith: Does someone
in those circumstances have the right to be given all the assistance
and the welfare of the child not be taken into consideration,
the child which would be born?
Ms Sainsbury: If she was fertile,
if she did not suffer from infertility, she could go out there
and try to get pregnant. I agree they have the right to try, but
unfortunately infertility treatment and IVF, as we know, is not
100% successful. It would depend what resources were around her.
If she had an extended family who would provide love and all the
rest of it, you would look at the welfare of the child and then
make the decision. If she was fertile, she could go out there
and try.
Q312 Geraldine Smith: Surely the
welfare of the child must be taken into consideration.
Ms Sainsbury: Absolutely; I agree
totally. The welfare of the child should be taken into consideration.
Q313 Geraldine Smith: So there must
be some circumstances where people do not necessarily have the
right to have a child then.
Ms Young: Do you mean that they
do not have the right for the NHS to pay for them to have a child
or do you mean that they do not have the right to try for a child
if they have private resources to do so? These are two completely
different scenarios.
Geraldine Smith: There are certainly
points related to people's age and what impact that has on the
child they will be bringing up.
Chairman: The welfare of the child, bringing
the child up.
Q314 Geraldine Smith: Yes. A very
old parent, say a woman in her fifties. There has to be some cut-off
point. You cannot say anything goes; certainly that is my view.
Ms Young: Yes, of course. I would
totally agree that there has to be a cut-off somewhere. Within
society, we do know that there is a cut-off. In the UK, because
of the legislation we have here, in general you will not find
older women being treated. It is very rare that you see that happening
here. It is not very rare to see that happening in other countries.
Ms Griffiths: On that score I
would say that it follows; nature has its own cut-off point. Yes,
from the fertility point of view the woman does not have that
choice.
Q315 Dr Harris: May I pursue this
point briefly? Geraldine Smith asked you a difficult question
because you accept that the welfare of the child has to be considered
and therefore there might be circumstances where even the right
to try, when one needed state assistance, whether it be a licensed
state assistance in the private sector, or actual funded state
assistance in the NHS, might not apply. What do you think to the
argument that the welfare of the child is rather spurious because
it is in the interests of most children to be born and the alternative
is no child? Even a child who might need extra help because their
parents were older or ill is still better off than not existing
at all. Do you think there is something in that argument?
Ms Sainsbury: I do. It depends
how far you take the welfare of the child. If she has a life-threatening
illness and you know she is not going to be around for much longer,
then you do look at who is going to be left to care for the child?
Q316 Dr Harris: Do you think that,
if that is the case, it would be better if that child were never
born rather than orphaned or lost its mother at such an early
stage?
Ms Sainsbury: It would really
depend on whether they had aunts and uncles and grandparents and
a very close family network. Anybody could have fertility treatment
and then get knocked down by a bus. You have still created a child,
you have still had it orphaned and you gave that child a chance
because you have taken into account the outside family. We were
certainly asked welfare-of-the-child questions: "If we were
killed, who would be left to care for the child? What would happen
to it? What provision would be made?". We were questioned
to that extent when we did our cycles.
Q317 Dr Harris: We have had evidence
from clinics that since the suggestion, since confirmed, that
the government was going to end donor anonymity, some sperm banks
are having real trouble getting sperm, in fact all the existing
donors said they refused to donate if anonymity was ended. Do
you have concerns that the rights of people, the interests of
people to access treatment for infertility in non-controversial
circumstances might be compromised by this decision to end donor
anonymity in the supposed interests of future children?
Ms Sainsbury: Absolutely, but
technology will hopefully one day catch up and be able to take
an egg from somebody, extract the DNA, separate the DNA strand
from the mother and the father and put in a bit of each so you
have biologically your own child and put that back without the
need for a donor at all. It was a contributory factor to stopping
our treatment that there were no known donors. We were totally
for the removal of donor anonymity because we felt that we would
never have lied to our child. We used donor sperm for six cycles
and were going to tell that child from day one. We were going
to do prayers every evening and say "God bless all the people
who helped you to be here", so that in their own time they
questioned that more and more.
Q318 Dr Harris: My question was:
if the ending of donor anonymity meant that people in your circumstance
could not get treatment using donor sperm, do you think that is
just tough, because the ending of donor anonymity is so important
generally?
Ms Sainsbury: I think other countries,
where they are more open, have found that their figures have gone
up again, because people become more informed and are able to
make more informed choices and decide that is the right thing
to do and they are helping so many people.
Q319 Dr Harris: So you are not worried
about the current situation and think it will improve. What about
Sheena or Sharon?
Ms Young: When this subject of
removing donor anonymity was first broached, I have to say that
I was totally against it. I was quite happily against it on a
personal level. I have had egg donation treatment and I have to
say that, like Tracey, I made the decision that from day one,
if I were successful, the child would know they were born from
egg donation. However, I also saw that there was such a lack of
donors and I waited many, many years to have egg donation, so
that reflected how I felt. I felt that it would indeed reduce
the number of donors available. I am still sure that it will,
but the decision has been more or less made and we have to work
within that decision. It has worked in other countries. What we
need to do here and what we have not done for many, many years,
is go all out to change the culture, as the minister said when
she made her announcement on it. It is really all about a culture
change. In this country things are so different and people think
of even IVF and PGD and all those things. People view it so differently
here. We really are very much more inward about it and people
do not talk about it as openly as they do in countries like Sweden
and Norway.
Ms Griffiths: My history was back
in the 1980s and I did donor insemination. I have not thought
about what I would do now, but at the time I probably would not
have told the child. I had a totally different outlook from the
one I have now. It failed for me, but I did it a good few times.
There was no issue about how much. It was freely available.
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