Examination of Witnesses (Questions 1299
- 1319)
WEDNESDAY 19 JANUARY 2005
MISS MELANIE
JOHNSON MP
Q1299 Chairman: Welcome, Minister,
again, and your team. We have many questions; we will try and
be short and very sharp in our questioning, and perhaps you can
do the same with answering. It is very nice to have you here to
help us with our inquiry. You will know how important this is
and the government has indicated its interest in this particular
endeavour, and no doubt there will be some enterprise and changes,
I hope, in a year or so's time. Let me start by asking you about
the limits of reproductive freedom. Suppose the public, on the
one hand, said "No way" and, on the other hand, there
was another organisation with somebody saying "This is fine,
the welfare of the child is protected" and so on, where would
you sit in that kind of debate?
Miss Johnson: I am not sure what
the "no way" is but if I can start to answer your question
by looking at the parameters which have been set by Parliament,
the whole framework in which the HFEA operates is enormously important
and it is very important that is set by Parliament because Parliament
is, amongst other places in society, one of the main places in
which these sorts of debates can be had; to the degree to which
they are resolvable they can be resolved; and a decision can be
made on the very difficult issues in front of society on issues
just like this one. So the framework is there and the HFEA or
another organisation like the HFEA is there to work within that
framework, basically. So I think it is up to us, as it were, as
Parliamentarians, in discussion with society, in discussion with
religious and moral leaders and the public more generally, to
come to a view about what the basic framework ought to be, and
obviously that is what the HFE Act did in 1990 and that is where
we need to look to continue that in the future.
Q1300 Chairman: When you look back
down the line more recently than 1990, let's say to the stem cell
debate, there were some short sharp exchanges and differences
of opinion there which were always developed in Parliament. Have
you any views on that? How would the government operate? Would
there be a free vote, or do you think that in this kind of arena
the government itself would have to take a strong line?
Miss Johnson: I think on lots
of these issues there has historically been a free vote but as
you know, Chairman, it is a matter for the usual channels to decide
whether there are free votes on things at the time that the business
is being put to the House, as it were, and interests of all parties
are involved in those decisions about whether there is a free
vote or not, and there may be areas in this sort of debate where
there could be. Indeed, on stem cells there was a free vote and
there was a very different and eclectic mix of people in each
division lobby as I recall at the time, and in other areas it
may be that there are things which all the parties would agree
ought to be dealt with in the usual way through a whipped process.
I do not think we can pre judge that here.
Q1301 Chairman: In your interaction
with another department, for example the Department of Education
at the minute and so on, where stem cell research is another issue,
where you know there is a controversy there in terms of Parliamentarians,
government and so on having very strong views on a particular
issue, have you a view on that kind of situation, on how it should
be handled? You believe in neutrality, I guess.
Miss Johnson: As part of this
process to start with we have said we do not want to revisit the
stem cell decision that was made a few years ago because we do
not think there is a need to go back to that. It is one of the
areas where we have already said that we think that is without
the boundary of the things we want to consider in the review,
and I think there are many issues, in fact, on which we need to
get a view and one of the ways in which we want to take that forward
is to go through the process of debate which this is part of.
Now, when I announced the review I announced it knowing, as you
know yourself, that there would be this work going on by the Committee.
We are looking fundamentally beyond certain boundaries or within
certain boundaries perhaps, for the Committee to provide some
recommendation, some starting point, for the discussion on many
of these difficult issues which we then envisage over the year
2005 and into 2006 there will be public debate on, and then a
process of drawing up the legislation and bringing it before the
House, so it is quite a long-term process with a lot of time investment
and I think a lot of consultation and discussion to go but we
are certainly looking to you to produce some recommendations on
many of these difficult issues as a starting point for our consideration
and for the debate with the wider public and the House.
Q1302 Chairman: I asked you with
regard to the Department of Education and its role in funding
or whatever in stem cell research or any research in the arena
we are looking at. Do we have any influence at the minute on that
process?
Miss Johnson: I think you would
need to ask colleagues who deal with those matters more closely.
I am very well aware of the fact you have an article on this subject
today in one of the newspapers—
Q1303 Chairman: Where?
Miss Johnson: As I say, stem cell
work is something which in general we see as outside of this.
In terms of research more generally, though, one of the things
we are certainly saying is one of the reasons we think the Act
needs to be reviewed is the fact that more work could be done
on research, linked up with issues around confidentiality and
sharing of data, information which currently exists within the
system but cannot always be extracted and used sensibly now, and
we think there is a great need for that. The HFEA have a lot of
that information; at the moment it lies unused and cannot be used
for a variety of reasons easily; we would like to facilitate that
and we certainly think the whole area of research is very important.
Q1304 Dr Turner: Minister, IVF treatments
are no longer exactly novel but they are still being regulated
almost as if they were new, and regulation is a very heavy part
of the HFEA's work. What is your feeling about the future need
for regulation? Why do you think assisted reproduction needs the
degree of regulation it has at the moment, and how important do
you think these factors are?
Miss Johnson: First of all, it
is not really because of novelty, in truth. Most of these things
are not principally about novelty at all; they are about the fact
that they raise fundamental moral and ethical questions which,
as a society and as Parliament representing the people in society,
many people will have different and often very opposing views
on and where there are all sorts of issues which are raised. In
the case of IVF clearly there is the interest of the child being
created, which is being created through a process in which clinicians
and others are engaged, so there are issues there; it is not a
natural process, as it were, so there is a fundamental interest
of the child which should always be in front of us as the main
interest in any of this. Secondly, there are all sorts of issues
about the welfare of the patient, the vulnerability of the patient,
the role of the clinician and a lot of questions about developments
and uses to which technologies can be put and I think for all
of those reasons it is appropriate to have IVF regulated, and
I think even whilst some scientists and some clinicians might
not find this to their liking, we as a society here, as a result
of the regulation and the framework we have and the work that
the HFEA does, have a degree of public confidence which I think
is the result of that. "If it ain't broke, don't fix it"!
Q1305 Dr Turner: We expect, of course,
all medical treatments to be regulated from the point of view
of patient safety, competence, etc, and the question is is the
regulation in the field of assisted reproduction proportionate?
Given that the HFEA is employing about 90 people to regulate 100
clinics and the average sized IVF clinic is paying 100,000 a year
in licensed fees at the moment in order to be able to operate,
is the regulation at the moment proportionate or can it be slimmed
down without prejudicing the safety of outcomes?
Miss Johnson: That is something
on which we would welcome discussion and debate and I am sure
the HFEA are open to suggestions too. I am sure they have tried
to get that regulation as light-touch as possible and I know they
have done things to facilitate that and to make it as effective
as possible, and I am sure you have already heard about those
this morning, but what you are saying is effectively one person
per clinic which does not seem to me to be a very heavy level
of regulation. As an organisation, and I do not need to tell any
members here, this is a very small organisation—as you say
it is about 100 staff—and that is a very tiny organisation
these days.
Q1306 Dr Harris: How do you think
the precautionary principle should work in this field? Do you
think we should not allow things until it is shown that they are
safe, or we should allow things to occur, as happens in medicine,
with new breakthroughs like in transplantation as long as there
is evidence that they are not too risky or damaging?
Miss Johnson: What we need to
do is base a lot of what we do on the best possible science at
any one time. As you are well aware, you cannot prove anything
definitively works; what you can do is prove that things do not
work—that is the only form of proof available. You cannot
prove a positive; you can only prove a negative. You can see that
things are as safe as they possibly can be in any arena of life;
you cannot definitively prove the opposite. That is a philosophical
point—
Q1307 Dr Harris: I thought it was
the other way around, but I know what you mean!
Miss Johnson: Sorry, you are right,
it is the other way round, but it is a philosophical point at
the end of the day. What I think is that for most of these things
we have got good evidence about what is being done and the safety
of it. In some areas we would like to do more work, for example
in the safety of IVF. Nobody questions the fundamental safety
of it: all the evidence points in the right direction, but we
have got research data, and this goes back to the point I was
making earlier on, that can be used for research purposes which
is currently not able to be used for that purpose, or not as freely
and as widely as we would like.
Q1308 Dr Harris: I understand but
there maybe other questions on that. I want to bring you back
to the original question which was that where a doctor who is
regulated by the Healthcare Commission and by the GMC and so forth
feels it is reasonable to treat a patient, to do something, at
the risk of being subject to that regulation, do you think it
is reasonable for the state to say "No, we need to wait until
we know that this has not got any significant risks", perhaps
from overseas practice or something like that, or do you think
it should be reasonable to proceed with that and make sure that
the data is captured for research until problems emerge if there
is a basis for treatment? I think those two are different and
I am keen to know your preference.
Miss Johnson: I think you need
to apply high standards to this work. Here we are talking about
vulnerable people and creating life, mostly, and these are very
fundamental issues. It is very important from the point of view
of everybody concerned that they are not effectively used for
what might be otherwise perhaps couched as experimentation, so
we certainly need to be sure we are operating in an environment
where we make sure that those things that are done are done with
the best possible knowledge about their safety and the best possible
evidence that can be gleaned, but the point is you cannot ever
be absolutely certain that something is 100% safe.
Q1309 Dr Harris: I know that, and
I was not assuming that. Do you believe that the welfare of the
child that does not yet exist should be paramount over the need
of patients to be treated for infertility?
Miss Johnson: I have already said
that I think the welfare of the child has to be the overriding
main concern of anybody working in this area. The main overriding
concern is the welfare of the child.
Q1310 Dr Harris: That is paramount,
is it? That is different from the law as it stands, so that is
going to be your initial position.
Miss Johnson: It is one of the
things which the law demands is given consideration.
Q1311 Dr Harris: That is right but
you have said three times now that it should be the overriding
factor. Is that the government's view at the outset? What you
have said three times I am assuming is the government's view at
the outset of the HFEA consultation of the welfare of the child
and at the outset of the Department's view, because that is a
new position compared to the law?
Miss Johnson: Well, I am not setting
out what I see is a new position actually, so can I be clear about
that. What I am saying is that I believe that the single most
important factor is the welfare of the child.
Q1312 Dr Harris: If that is the case,
and there is good evidence that the child does better in a family
where at least one of the parents is in work—and there is
good evidence to that effect, sadly, but nevertheless that is
the case—do you think that we should be more willing to
treat people where that is the case who are otherwise infertile
in order to—and I will ask you to assume my assumption if
you are not happy with it for the sake of this question—ensure
that the welfare of the child is paramount?
Miss Johnson: You are suggesting,
I think, that the child has to do the best possible, as it were,
and that is not necessarily the only thing to be considered for
the welfare of the child. It does not have to have the best possible
outcome of any child in society to have a good quality of life
and for its welfare to be protected.
Q1313 Dr Harris: Is it reasonable
to discriminate against people who are infertile on the basis
of future potential problems? For example, for fertile people
with criminal records, the state does not, at least yet, intervene
to sterilise or seek to stop them having children but obviously
alert social services, there is an at-risk register and risk management
of those situations—and I certainly do not want to suggest
a policy in my question—but in the case of the infertile
they are asked intrusive questions about their background almost
on the basis that all the at-risk registers, the social workers,
the ability to take into care is not going to operate and we should
at the point of conception stop those people having children.
Do you think discriminating in that way between the fertile and
the infertile can be justified ethically?
Miss Johnson: I think there are
differences because we are putting people through a process and
other people are involved in that, but as you have ably illustrated,
even for those born as a result of natural conceptions, sometimes
the welfare of the child is considered to be best dealt with away
from its natural parents and therefore society does not ever stand
back entirely from the welfare of the child—as indeed it
should not. There are different triggers, as it were, for fertility
treatment and different triggers for those who are naturally conceived,
but there is probably quite a lot in common. I do not think any
of us think there should be more intrusion around natural conception.
It has been a fundamental belief in our society for many centuries
that that process should not be interfered with by the state,
and indeed in societies where that has happened clearly there
is a very different cultural assumption and often a lot of resistance
to that interference. I do not think any of us would suggest that.
In the case of IVF or similar procedures what is happening is
there is the intervention, there is the question of creating the
child, there is the question of the welfare of the patient, and
there is the question of the technology and use to which it is
put, so there are a lot of ethical and moral questions which arise
which do not arise in the context of natural conceptions.
Q1314 Paul Farrelly: Do you think
the welfare of the child would be well served by permitting the
sort of treatment we have seen to a 66 year old woman in Romania,
or do you think we should look at it from the point of view of
that lady's human rights which would be infringed by not allowing
her to have that treatment?
Miss Johnson: Our starting point
on this is that as a general rule it is better for the children
to be born into a two-parent family with both father and mother,
as Mary Warnock said.[1]
There are all sorts of issues around this particular case, as
I am sure you are aware, but the 1990 Act says that clinics must
take account of the welfare of the child before treatment, and
the guidance which is given in the HFEA's code of practice for
clinics sets out the expected proper conduct and it includes a
range of factors—medical and social, the risk of harm from
inheritable disease, multiple births, commitment to raise children,
the age and health of the parents, and there is not any upper
age limit in the United Kingdom at present—and clearly that
is there and the final decision is for the clinic and the clinician
to decide on whether they provide or withhold treatment. The HFEA
is currently consulting on its guidance on these matters and I
am sure you have raised these issues with them. They have a response
closing date of 7 April.
Q1315 Paul Farrelly: Had that been
a British woman, what would your reaction have been? Would you
have been horrified or would you have thought "What a wonderful
situation, we have the technology that allows a 60 year old woman
to have babies"?
Miss Johnson: I think it raises
a lot of difficult issues and all of us recognise that. We need
to be careful to look at those issues for both genders as well
for the age of being a parent, and those issues have arisen particularly
because of the treatment in this particular case.
Paul Farrelly: Would you have had a reaction?
Q1316 Mr Key: The poor minister is
trying not to!
Miss Johnson: Thank you! I do
not think it is necessarily appropriate for any of us as individuals
to comment on an individual case. It is very hard to know the
details behind all of that as an individual case, and that is
why at the end of the day the individual cases are dealt with
within the frameworks we have set and we have the choice about
what those are and the setting of them, which is proper and correct,
and other poor souls—if I may say so—have the very
difficult decisions about what to do in the individual cases and
that is probably best left to the clinicians within those frameworks
and within the regulation.
Q1317 Dr Harris: If a young woman
had a life-limiting illness but wanted infertility treatment,
do you think clinics should be saying, "Now, how long have
you got because the welfare of this child may be such that at
best this child is born and then loses its mother at the age of
ten"? Is that the sort of thing you think the welfare of
the child provisions in these sorts of cases, whether it is someone
with life-limiting illness or who is 66, whose age is somewhat
life-limiting as well, should involve clinics in doing?
Miss Johnson: I do not think it
really matters, if I may say so, what my view about this is—
Q1318 Dr Harris: Well, you are the
government.
Miss Johnson: I represent the
government in terms of what we are doing now. What we are going
to do within broad parameters, and I set out one of those that
we think as a general rule it is best for a children to be raised
by a mother and father in line with the Warnock statement I specifically
quoted earlier on, is look for a debate and some recommendations
from the Committee at this stage to inform our views and to inform
public debate. I at the end of the day will only be but one member
of the House in making any decisions about the frameworks and
I have already said to you and to others that I do not think it
is for any of us necessarily to go into the arena of what is proper
within those frameworks in an individual case without knowing
the individual case—
Q1319 Dr Harris: I understand what
you are saying but did you say that it is best for a mother and
father and all that to Diane Blood, or did you say "More
power to your arm, Diane Blood, we will bring you a Bill to legitimise
what has taken place in respect of the birth certificate"?
I put it to you you did not say that to Diane Blood. You are saying
it to us now, but when the Daily Mail is on board—
Miss Johnson: Our basic tenet
is that as a general rule it is better for children to be born
into a two-parent family with both mother and father.
1 Note by the witness: Report of the Committee
of Inquiry into Human Fertilisation and Embryology, Cmnd. 9314,
July 1984. Paragraph 2.11 " . . . we believe that as a general
rule it is better for children to be born into a two-parent family,
with both father and mother." Back
| 
