Discussion: Multicentre approaches to donor insemination in the
French CECOS Federation
Matching donors and recipients
Bassas: My question comes from direct experience in
our sperm bank when we end up with a number of
couples who have been waiting for a long time asking
for insemination because there was no semen available
from the same blood group. We could match other
characteristics, phenotype characteristics but not the
blood group. Many of those couples agreed to go ahead
and not to match correctly the semen donor. But I always
feel bad when I do that, for two reasons.
First, because the couple comes and has made their
decision and has gone through the whole process and
arrive there with inertia of starting the programme, and
you tell them that now there is another problem, an
unexpected one. Many times they say it does not matter,
go ahead, just because they do not want to think through
it again. They are not in a calm and objective mood to
make a right decision I think.
And the other reason is that if you are giving them a
semen sample which will give rise to a child which, for
sure, will have a combination impossible to reach given
the fathers, you have to tell them that they are not free
to choose whether to tell the child the origin of the
conception. And in Spain I think >75% of the couples
choose not to say anything. And in fact many gynaecologists advise to do so. I do not know whether this is
correct or not, but this is what happens.
a second pregnancy, with very few exceptions. So our
policy is to identify Kell group for donors to know and
not to match for the first pregnancy. Now the problem
of Kell is a very small problem, because Kell positive
is 5% of the population.
The problem arise for a second pregnancy in a couple
having a Kell-positive donor at the first pregnancy.
Because they ask for the same donor. So we screen the
woman for Keil and if she is totally negative for Kell
antigen we will use the same donor. But if she is positive
we will refuse to use the same donor for the second
pregnancy.
Jouannet: The importance of have regional centres,
regional banks, or I should say banks with a minimum
number of donors and of activity, is stressed by that
kind of problem in matching donors and recipients. Of
course, if you have a large centre and if you have
a large recruitment of donors, you will have more
opportunities to be able to match donors and recipients.
In a small centre, with a small number of donors, it
would be much more difficult to be able to match for this.
Le Lannou: The problem is the secrecy with regards
to the child. If the couple want to tell the child there
is no problem concerning the impossibility of good
matching. But, if there is no available donor, they are
going to accept even if they do want to keep it secret.
There is a contradiction between the decision we ask
them to make and their own wishes.
Baldock (HFEA): An alternative to having a few centres
with a large number of donors is to allow centres to
supply each other with the semen of which there is a
shortage, which is permitted in the UK. You are unlikely
to find that there is no centre, nationally, that has a
donor that you need; even ethnic donors are available if
you look for them. And an advantage that we have is
that centres can contact the Authority, which is the
central body that has the register of the donors, and we
can tell individual centres where to look for one of the
right type. If they were on blood types, they would have
to contact each other because we do not keep that detail.
Jouannet: In such circumstances counselling is very
important. The couple and you as a professional have
to try to predict what will happen. You cannot have a
general rule since the way to proceed depends on the
couple's situation.
Jouannet: In France we have centralized organization,
but we have also a telematic network. If a centre needs
the sperm of a donor with a rare characteristic e.g. ethnic
minorities or rare blood group, he can ask for the help
of other centres on the computer.
Englert: I want to stress the Kell problem, which is to
me more than a problem of having Kell group on
your identity card. This is now the first reason for
isoimmunization with the disappearance of Rhesus
immunization, but that is always a problem arising for
Tarlatzis: I would like to ask Dr Gottlieb, in thencountry where the secrecy is not an issue, what is
your policy?
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Gottlieb: This is also in our legislation. We are forbidden
© European Society for Human Reproduction & Embryology
Human Reproduction Volume 13 Supplement 2 1998
Discussion: Multicentre approaches to DI in the French CECOS Federation
to match on things other than eye colour, hair colour
and height. By Law we must match for anything else.
We are not allowed to match according to blood types,
so do not test for them.
Jouannet: This is really a problem, because I thought
in Sweden the Law gave the choice to the parents to
tell the children how they were conceived. Of course,
we know the conditions about anonymity, but we did
not know that it was mandatory to tell the child. I
thought it was a free choice for the parents. What would
happen when a child will learn at school about genetics
and blood groups and when he will see that his father
is not of the same blood group, etc.
Tarlatzis: What about second and thereafter pregnancies
from the same donor? Should the bank keep samples
from the donors for the needs of the families that already
had achieved a pregnancy in case they wanted a second,
a third, or a fourth child? Should they keep them, and
for how long?
Englert: Our experience is that the parents are very
insistent on having the same donor for extending the
family. We expressly explain to them that we will try,
but we never promise. Now we store sperm from donors
having a pregnancy and I would say that in >90% of
the cases we have been able to give the sperm of the
same donor for extending the family, which is also, in
my view, an advantage in terms of avoiding the problem
of consanguinity on a larger scale.
With regard to matching, I would say that one thing
should be stressed and that is the interest of matching
to allow the family freedom about the choice of secrecy
or not. And I think that that is basically the importance
of matching.
Baldock (HFEA): We are about to add a guideline to
our Code of Practice that proposes that matching the
ethnic origin of the partner of the woman being treated
should be done, and that you should not seek not to do
that. Because there were a couple of cases last year
which brought this up. A woman in Italy, who was black
and married to an Italian, asked for a white donor
because she felt her offspring would suffer in Italy from
being of mixed race. There is another case in England
where the woman was black and her husband halfcoloured; there is another complication there. So there
is a guideline going to be added to suggest that this is
not good practice. The guidelines phased more in the
negative. It is not good practice to seek deliberately to
avoid matching the partner of the person being treated for social reasons.
Genetic screening
Tarlatzis: In our practice we have had some requests
from, for instance, families with screened cystic fibrosis
who request a cystic fibrosis screened donor. We obviously have asked the consent of the donors to be
screened. Do you think at a general level that this is
something that is going to be appearing as a recommendation, and would you think that its a good thing to screen
everybody, considering in our country most of the donors
will be Caucasian and at risk, and of course we also
screen for sickle cell and thalassemia in appropriate
other ethnic groups?
Thepot: My personal opinion is that it is good to make
this screening for cystic fibrosis. In France we have the
Genetic Advisory Group, and the majority do not think
that it is a good solution. The reason is that in Western
Europe this is a rare disease. And what to do with the
donor when we have an heterozygote donor? What do
we say? My experience is not very good, because
information is very difficult to give. It's a problem for
the couple, for the people, for the individual to say 'I
am heterozygote. What should I do?'
Bassas: If you test the donor, you should also test the
recipient although the disease might be quite rare, in
fact I think 5% of the normal population are carriers for
some of the cystic fibrosis diseases, which is a respectable
percentage. But the problem is that while in Northern
European countries almost 80% of the carriers are
AF508, in Southern Europe this only accounts for 50%,
and there are as many as 500 different mutations now
described. So I think that the whole matter gets more
and more complicated if we start on this path.
Englert: We have an approach of screening for AF508
in Belgium which is much larger than for the donor. We
propose to all pregnant women to test for AF508, so we
do it, of course, also for the donors which would be
absurd not to do when trying to identify couples at risk,
which are both carriers. So our policy would be to
screen the donors, not to exclude positive donors as for
any other recessive disease, but not to match with a
recipient having the same carrying genes, having a 25%
risk of having a baby with mucovicidosis. It is on a
voluntary basis, that means that we really propose it to
people and not oblige people to do so, and in our
experience is that nobody refused. We prepare our
patients by saying 'I propose that you be screened for
this disease. There are quite a lot of people who are
carrying the genes. So if you are positive, we will test
your husband. If your husband is positive, then that is
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Discussion: Multicentre approaches to DI in the French CECOS Federation
the only situation in which there is a problem'. Then
the patients are ready to hear about the fact that maybe
they are carriers like a lot of people are.
My feeling is that it is ethically acceptable and maybe
avoiding some dramatic situations with acceptable strategy, because the objective is not to exclude the genes.
And I think what would not be acceptable is to exclude
these donors because of carrying a genetic recessive
disease. The only restriction to this position may be due
to the uncertainty of negative screening; a positive donor
will produce one affected child out of 700 births when
the recipient is tested and negative. Is that risk level
acceptable?
Tarlatzis: I had the experience of affected couples in
various circumstances and the personal dilemmas are
very severe. They have a choice, which is unusual since
we never screen our partners before we marry them. So
I am wondering whether in making your decisions in
your genetic advisory committee, have you taken into
account, or discussed it with some of the couples
involved in that programme? And what has been the
couples' approach? Do they agree with your proposal
not do any screening?
Jouannet: Francois Thepot proposed to have a genetic
advisory board, he defined the possible composition and
the missions of such a genetic board. This board could
give recomendations and take decisions, it could decide,
for instance, if we should screen donors for cystic
fibrosis mutations or not, or that we should screen only
in some situations. Screening of the risk and in which
circumstances a risk is taken maybe defined and
organised. It can also be done case by case.
Shenfield: I think it is probably a good idea, and I think
it also covers one of the questions; the screening should
not really be different to natural fertility. And its starting
to happen in natural fertility with preconception clinics
where women, or couples, come to inquire about their
prospect for the health of their potential child because
they know of some adverse events in their family, and,
for instance, they are advised to obtain information.
People who go for donor insemination have the same
knowledge and the same exposure to information than
other couples, plus sometimes special requirements, as
we discussed earlier. For instance those who have already
suffered cystic fibrosis, either personally or in their very
close family. I think their wishes should be respected,
or at least considered, and there is probably no better
way than having a group with different skills to try to
assess how feasible this is.
52
Tarlatzis: Would it not be possible with today's existing
knowledge to define certain populations who are at an
increased risk, and in these populations the utilization
of certain tests would be justified. Of course, I have the
obvious example of thalassaemia in my country.
So I think that we can scientifically identify certain
populations, like the Jewish, for certain diseases, or CF
in Caucasians, to see where to assess the risk. In possible
guidelines that we may prepare, say that for these
populations, the screening for these diseases is advisable,
but for the rest and for the moment refer to the advisory
board. That could perhaps be an alternative solution.
Jouannet: Guidelines cannot answer all questions. In
front of a given case sometimes you do not know what
to do. It is very useful to have some kind of body where
you can exchange with other people to make the decision.
Englert: I have some concern about such an approach.
Genetics is a very good example of the difficulties of
this kind of centralization of decisions. You know that
in all the discussions around eugenics, one of the key
points in a centralized policy is in terms of managing
genetic diseases and genetic variability. More and more
that variability is very good in our practices, and that
what we really need is exchange and circulation of
information, of attitudes, trying to understand how we
react. But I do not think it is so important that everybody
reacts in the same way to the same situation.
Especially in genetics, I think we have to be extremely
careful about centralizing decisions and delegating our
responsibilities as treating doctors to bodies in a field
where they are, within our society and between our
societies, extremely large variations in the perception of
problems. In terms of CF, for example, where we in
Belgium have very different attitudes than in France. In
my view this is not a problem. So if there is a
place where we could exchange attitudes, information,
approaches, fine. If we try to standardize this kind of
problem, I will be against it.
Jouannet: In the CECOS system, the centralized body
has no power of decision. The decision belongs to the
centre and to the physician within the centre. The
decision is taken by the physician after discussion
in the centre, but also after collecting all the useful
information he can, to make his decision. If you look
to the balance between the advantages and the disadvantages, my feeling is that there are many more advantages
to have some kind of centralized body to make recommendations. We need references for the discussion and
for the decision, also for the follow up. As you know,
knowledge in genetics is growing very fast. Something
Discussion: Multicentre approaches to DI in the French CECOS Federation
which can be true one day, can be completely different
within 2 months. We need some kind of expertise and
discussion.
Thepot: The aim of the Commission is not centralization
of decisions. It is only centralization of exchange,
centralization of information, to have a reference centre.
Because the problems are very rare; once or twice in a
year, and sometimes very different.* So it is important
to have somebody, or a place, where you can go and
ask what to do. But the decision belongs to the centre.
The decision is only a medical act.
de Bruyn: In Holland, in our guidelines we advise all
the centres to have a strong association with one genetic
centre for all their questions, but there are no rules as
to what to do with a specific disease, or with a specific
problem from a donor. The only rule is that you
have to be associated with one genetic centre in the
neighbourhood. Discussion there is possible.
Jouannet: This is a very important point. If you are
involved in gamete donation you cannot do it without
any genetic expertise. Centres involved in this field
should be connected to some genetic expertise, as it is
the case in the Netherlands.
Englert: What is the importance of having semen or
blood samples for genetics in terms of medical interests
for the future child. There may be an interest in terms
of legal issues, but I am not sure. But from a medical
point of view, I mean if you find a genetic problem, the
fact that it is coming from the donor or from something
else would probably not change a lot about how you
will manage the problem in the child. It is frequently
discussed, but I do not really see the importance of the
issue. But maybe I am wrong.
Jouannet: Keeping semen or blood samples for further
studies could be useful because we do not know what
will be possible in 10 or 20 years. We should inform
the donors, and we should inform the couples that there
could be an interest, not an individual interest but a
scientific or medical interest to do that. We should
encourage that. We should also encourage institutions
and centres to do it since those samples could be a
source of very valuable information on pathologies
unknown at the time.
There is more and more evidence that azoospermy
and other spermatogenesis defects may have genetic
origin. Population of men (donor and patients) coming
into the centres could allow very useful researches. In
our Centre, it has been found that fertile donors who
are the brother of an infertile man have a lower sperm
count. This could allow the study of genetic factors
regulating spermatogenesis efficiency independently of
pathological cases.
I think that centres involved in gamete donation
especially when they also treat infertile patients are in
a unique position to collect information and to develop
research studies on fertility and sterility.
Critser: A few years ago the American Association of
Tissue Banks required retroactive testing for HCV. In
many cases semen had been stored for a second pregnancy but insufficient serum had been banked to allow
retrospective testing, so that bank of semen was not
releasable and many patients and clients were very upset.
So in addition to keeping whole blood, keeping extra
serum for infectious disease screening may be necessary
and important in the future.
Prevention of consanguinity risk
Barratt: The limits put on the number of childeren born
per donor are arbitrary and are adopted for social reasons.
They are not based on any scientific or genetic principles
otherwise we would have in the UK 1000 children per
donor, but they picked 10.1 would be interested to know
how you go about picking, say five, as was done in
France, or how you actually manage to pick a figure.
Jouannet: You are right, there is no scientific support
for a number of five in France, 10 in the UK or in the
USA. I do not know how those numbers were determined.
For the French one I know it is completely arbitrary.
The reason why it is so limited is not for demographical
or scientifical reasons, but more for social and cultural
reasons. It is because people are not ready to accept the
idea that there could be many children born from one
donor. If we want to limit the risk of consanguinity we
should limit the number of families and not the number
of pregnancies or children. Some other precautions could
also be taken to limit the risk, such as exchange between
centres, or storing sperm samples for 10 or 20 years
before using for other couples. We should ensure that
the risk of consanguinity is zero.
Gunning: I think your, suggestion of limiting the families
is a very good one. But there are sub-groups where there
are already problems of consanguinity within families,
particularly with the Asian population in the UK, where
first cousin marriages are very common. And where the
Canadian suggestion of not using people with the same
family name is also difficult because the name 'Khan'
for instance is very common, and they may or may not
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Discussion: Multicentre approaches to DI in the French CECOS Federation
be directly related. I think we really need to think about
these smaller ethnic groups within our communities, and
perhaps have a sub-set of rules which might apply
to those.
Jouannet: We have the example of countries from
Northern Africa where people quite often marry cousins.
Do we have to get into the cultural problems from a
medical point of view? I think that we should not do that.
Baldock (HFEA): The 10 in the UK was not plucked
completely out of the air. It was the result of the Warnock
Commission that took evidence and consultation for 2
years, and it was agreed that the risk of consanguinity
was an absurdity, but 10 was picked because it was the
maximum number that the general population regarded
as proper for somebody to produce through donation.
Englert: I think we have to admit cultural and irrational
aspects even if it's not genetically sound. You said that
is one out of 1X106, so this makes a negligible risk.
Jouannet: I do not approve the Council of Europe
recommendation saying that the law has to regulate
everything. The French experience is very bad. The law
should say that it is mandatory to limit the use of donors'
gametes, but how this limitation must be done has to be
defined by regulations of national bodies according
to various factors. For France for instance, I should
recommend 10 families but only in the Metropolitan
area. In Martinique or in Guadeloupe, the regulations
should be different since the population is much smaller
and isolated as on an island. Maybe we should be more
restrictive in such a situation.
de Bruyn: In Holland we also did this but we got a
completely different number, 25 families per donor, and
that is an average figure. So when one donor has only
one child, the other could go to 49. This is much higher.
Is it maybe possible to say that on scientific basis there
is a very high limit, and that each country or group can
make their decisions for cultural reasons, and not calling
any number.
54
Critser: There is now a more recent Office of Technology Assessment report in 1987. They have not done
another survey. Circumstances have changed quite a bit
since 1987.
Regarding the AFS recommendation of no more than
10 pregnancies; that was supposed to read no more than
10 pregnancies per population of 1X106, but somehow
the population of 1X106 got deleted, because they were
concerned about mobility of the society now, and they
were not sure exactly how to define the stable population
of 1X106.
Englert: It is difficult to maintain a level of 10 children
born to a donor because you may have several cycles
going on at the same time. In the French Law, which is
very restrictive about that, they have inserted the word
'consciously'. It is forbidden consciously to make more
than five children. You cannot control everything, and
if you have six or seven pregnancies because several
cycles were successful at the same time, that is acceptable. This kind of word can help to solve that kind
of problem.
Jouannet: Could you explain the position of the HFEA?
You say in your recommendations that the number of
children should be 10, but the donor has the opportunity
to limit this number. If you accept that the donor can
limit, why don't you accept that he can go over ten?
Why will you not accept more, because anyway there
is no scientific reason to limit the number?
Baldock (HFEA): I think I mentioned before that it
may be fruitless to look for logic in this matter. The
Authority has placed a maximum number of 10 which
is normally allowed, and it is allowed as an exception
that-is generally permissible for siblings. So from the
10 -you could get up to say 40, or whatever. The
expectation is that a donor may wish to reduce that figure
from the maximum allowed. There is no expectation that
a donor would wish to have more than 10 children, or
if he were to wish to have more than 10 children,
perhaps he was not suitable as a donor.