Examination of Witnesses (Questions 1340
- 1359)
WEDNESDAY 19 JANUARY 2005
MISS MELANIE
JOHNSON MP
Q1340 Mr Key: There are those who
say these decisions should not be taken by Parliament or the HFEA
but by individual clinicians acting on advice of local ethics
committees in clinics or hospitals. The trouble with those ethical
committees is that they are ad hoc, informal, some are better
than others, and not necessarily independently appointed. Have
you had any thoughts about how you as a government might make
proposals for the better establishment and working of local ethics
committees?
Miss Johnson: I have not come
to talk about the wider role of local ethics committees but in
this specific context we have thought about the suggestion which
has been made of whether they would be an appropriate vehicle,
and I have to say for the reasons I have already said about the
strengths of the HFEA and the reasons you have given about consistency
and accountability, and we have not talked a lot about accountability
but I think it is very important in this context, it would be
much better to have an organisation, and is much better, like
the HFEA dealing with these issues. It would be to devolve it
to a series of local decision-makers effectively.
Q1341 Paul Farrelly: I am interested
in looking ahead at the wider consultation in the context of our
report, and we have spent a year on this report. Procedurally
will the government respond to our report before launching a wider
consultation, or will you wait until the consultation has finished?
Miss Johnson: We are certainly
aiming to respond to your report and we hope you will have very
specific recommendations you will come forward with on these very
points we have been discussing, and others too no doubt. But the
exact order of things we have not yet resolved and it will depend
to a degree on when your report becomes available, and other issues
which we are all aware of as well, so I think we will need to
think about whether it comes at the same time, before or during,
but I think we will want to have a widespread public consultation
as part of this and we will obviously want your views to inform
both our views and the public's as part of that consultation.
Paul Farrelly: This might, Chairman,
be something on which we may wish to make a recommendation as
to whether the government responds first or later.
Q1342 Dr Harris: If you are planning
to review the HFEA Act, why did you end donor anonymity last year?
Would it not be better to consider that alongside the other changes?
What was the hurry?
Miss Johnson: In fact it had been
taken at an extremely leisurely pace and that was part of the
need to do something. There had been a widespread consultation
over a long period; the department had had the results of that
consultation for a considerable period too, and it therefore seemed
appropriate because to some degree there was almost planning blight
happening on donors as a result of the fact that the consultation
had taken place and no one knew what the upshot would be, and
therefore it seemed perfectly sensible. I do not think it does
in anyway undermine the consideration that can be given to the
HFE Act to have made that decision a year ago. When we are talking
about this timeframe, as I know you will appreciate, because of
the difficult issues and because we need to have public debate
and no doubt both Houses will want to engage in that discussion
as well, and then the process has to be gone through, we are probably
talking about a couple of years hence before we see any change
on the statute book on these things, so to hold up donor anonymity
for a period of time would have been completely unacceptable.
Q1343 Dr Harris: In the debates,
and I do not want to rehash them, you said you were encouraged
by the experience of other countries, and I think you mentioned
Sweden and certainly that has been cited as a place where there
was a rebound improvement, but when we went to Sweden we were
told by I think the main expert there that although there were
250 children born by donor insemination each year before the change,
there are now 60 in Sweden and the rest, I think about 200, the
missing ones, had gone abroad and so there is a worry in this
country that the donor supply would be affected. If it turns out,
and it is a moot point, that there are problems and adverse consequences,
would you consider putting this into the pot for reconsideration
in the review of the HFEA Act?
Miss Johnson: We would have to
look at that but I have to say that I think there needs to be
a fundamental change around the culture of donation. We have not
regarded it in the way that it ought to have been regarded as
giving couples life and hope in a difficult situation. We are
mounting a campaign and have already been doing that to encourage
more donors to come forward. The different age group of donors
who have families and have thought through the issues are very
appropriate. We only need 500 new sperm donors a year and about
1500 egg donors to more than provide for the needs of the United
Kingdom so it is quite small numbers.
Q1344 Dr Harris: I understand that
it was done in good faith and we all hoped it would be okay and
I know you feel strongly that it was the right thing to do and
I do not want to argue that point, but if there are problems is
it something you would consider putting into the review?
Miss Johnson: Well, anything that
is relevant can obviously be considered, and clearly also we do
not have any control over what your good selves do in bringing
issues forward to us either. If we thought that some thing needed
revisiting of any kind, be it this or something else, that would
be appropriate as part of this then it would go into it, yes.
Q1345 Dr Harris: In Australia there
is perceived to be a problem in certain areas, in Melbourne, with
sperm supply so what they have done there is they have written
to those male MPs who voted for the ending of donor anonymity
and appealed to them to set an example by donating sperm. Is that
something you would consider doing in this country to those people
who felt that they could safely vote for these regulations—
Miss Johnson: I do not think the
public would welcome that, do you?
Q1346 Dr Harris: I think you should
speak for your own party!
Miss Johnson: I speak for all
parties, I think!
Q1347 Dr Harris: Quickly, finally,
the head of the HFEA, Suzi Leather last January I think bravely
and rightly pointed out the problem of the 1990 provision about
the need to consider the child's need for a father and how that
might be at risk of challenge under the Human Rights Act Article
14 with the right to a family and so forth. I was wondering what
your view on that was because my view is that she should be supported,
particularly in the light of your view which you have repeated
a number of times now that says that it is best that there is
a mother and a father?
Miss Johnson: As a general rule
it is better. I can keep repeating this—
Q1348 Dr Harris: So my question is
how you relate those two because when my colleague Bob Spink asked
the question she was very clear and she said the ideal situation
is being brought up by two people, not mother and father, despite
being pressed twice, so there is a clearly a difference there.
Are you prepared to risk legal action if you continue that view
that the father is important?
Miss Johnson: Well, governments
are always at risk of legal action in the sense of people often
want to challenge legislation. Indeed some of the reasons for
this, although not particularly in this context, are to make sure
that we are reflecting in our legislation around these issues
things which are not going to be repeatedly challenged by the
courts, so there are some issues like that although, as I say,
not particularly in this area. I have already said what I think
is the bottom line and I think many children, if I may just go
back to the point somebody was pressing me on before—I think
you—on the question of what about families in which there
is only one parent or two of the same gender and what-have-you,
really many children have been brought up historically in one-parent
families for all sorts of reasons. My own father was brought up
in a one-parent family because his own father died as a result
of injuries after the First World War. It is not simply a feature
of modern life or of divorces and separations, unfortunate as
those are for all the parties involved in them. What we have to
recognise is the fact that parents must be keen to do their best
and we have to look at what, as the bottom line, is the best starting
point. We have already said, and I will quote what we said in
our paper to you, "The government will consider particularly
through public consultation the extent to which changes may be
needed to better recognise a wider range of people who seek and
receive assisted reproduction treatment", but I still go
back to my starting point that, as a general rule, it is better
for children to be born to a two-parent family with both a father
and a mother.
Q1349 Mr Key: Could I turn to an
issue of good governance? We have been told by social scientists
giving evidence to us that increasingly issues like sex selection
and even reproductive cloning are becoming more socially acceptable,
so the problem is how do the legislators interface with public
opinion? In the HFEA Act it says nothing about consulting the
public, yet we know that the HFEA is consulting the public quite
a lot. On the other hand we see that, where difficult scientific
issues are facing all of us and there is an ethical dimension
to it, increasingly the public seem to be bounced into giving
a response on the hoof about what they think, and naturally that
is going to be sceptical and probably rather reactionary because
nobody much likes change. On the other hand we have seen examples,
particularly in Scandinavia, where these sorts of decisions have
been taken after sometimes some years of education of the public
about the implications of such decisions. We do not go in for
that in this country, educating the public on the wider issues.
We take soundings and so on but do you think that legislation
should therefore be leading public opinion based on the evidence
of scientists and the judgment of politicians, or should we be
reflecting public opinion?
Miss Johnson: I think skilful
leadership is a mixture of taking people forward and also reflecting
the views of the people that you are taking forward, and it is
a very skilful mix to achieve good leadership. I think in this
there are different interests. There are the interests of scientists,
clinicians, not always the same people—some have more research
interests, some of them have more treatment interests—there
are the interests of various religious and ethical perspectives
in our society as well as the wider public who might sign up to
none of those particularly but who nonetheless have views, and
we have to try and weigh those in the balance. I do not think
we should be dragging the public anywhere; it is not our job.
It is our job to try and reflect as much as possible the overall
consensus as we see it as parliamentarians, and as we know people
see it differently but we do our best, in a judgment-of-Solomon
way, to come to a view on issues on which nobody really wants
to have to take end views because some of them are so difficult,
and then to act in accordance with that and to provide the safeguards
and the accountability and the measures necessary to make that
happen in the best possible way for our society. So I think we
have a huge responsibility in that regard to get that right and
I do not think it is about either driving forward or dragging
behind people but about getting somewhere in the middle, about
right, and that is a very careful judgment.
Q1350 Mr Key: Would you agree with
me, finally, that it would be sensible if in any new legislation
there was a sunset clause saying that this legislation must be
reviewed after five years, instead of waiting for us all to get
into the mire and be delayed and bogged down by controversial
issues and new technologies, like the Armed Forces Act, for example?
Miss Johnson: I will not argue
about the Armed Forces Act with you now! I think there is a case
in areas where things are fast moving and this is one, where it
is difficult to foresee the future and the future may be very
different from what we anticipate in terms of events and possibilities
arising. It is probably sensible to have fairly regular looks
at things but it is the mechanism of Parliament as well as of
government to try and decide what the best timeframes are. As
we all know, when we look at things we tend to do more, and some
are arguing in this House and no doubt around this table will
argue that in many ways we ought to do less so there is always
a balance to be struck there; the more you look probably the more
you do, so you have to think about what the timeframe is you are
going to do it in, but in principle I agree with the idea of regular
reviews of areas where legislation has to reflect fast change
or difficult issues.
Q1351 Chairman: Just quickly, Minister,
prosecutions are available under the Act and I think there is
a ten year sentence for various misdemeanours and so on, but there
seem to be very few prosecutions. Has the government got a view
about that aspect of the Act in legislation? Would there be more
or less?
Miss Johnson: I do not think we
do at the moment. At the moment it is for the authorities who
are responsible for bringing prosecutions to bring them. Obviously
we are not a prosecuting authority. We have seen, of course, the
HFEA in the licensing arrangements turn down a relatively substantial
minority of applications and also refuse to renew a smaller number
in addition, so in terms of the regulator having teeth and acting
in the first place, and I am sure you would agree prevention is
better than cure, it is better to get those things right in the
first place. We would hope, if legislation is working well and
regulation is working well, to see relatively few or no prosecutions
because there would be no need in an ideal world, so we do not
take a view about what has happened historically. As I say, that
is for those who are in a position to prosecute or not.
Q1352 Chairman: I am interested in
some of the nasty practices that might be going on in clinics
and so on. How good is the regulation at that? One way of monitoring
that is by the prosecutions. It suggests, it gives confidence,
that you are operating the Act to its full.
Miss Johnson: I think 22 out of
152, or thereabouts, research applications were turned down for
licensing and another seven were refused on renewal.
Q1353 Chairman: You do not know the
reason for that?
Miss Johnson: I do not have the
detail. I believe the HFEA has given you this information; I do
not think it is new information I am supplying. Whatever the exact
figures those are broadly the right figures, and what that shows
is they are taking pre-emptive action to make sure that situations
that they think will not lead to a satisfactory outcome do not
arise, and that is the best form of legislation.
Q1354 Dr Iddon: If people cannot
get their way here because something is forbidden by the law they
just go abroad. An increasing number are going abroad for assisted
suicide, for example, and they will increasingly go abroad as
reproductive tourists as well. How do we prevent that? Are we
living in a box or should we try to involve other countries, for
example, within the European Union?
Miss Johnson: I do not think there
have been discussions on these issues on an EU-wide basis and
I think apart from the Tissues Directive arrangements which are
about standards for clinics—air quality standards and other
issues like that—that would raise a lot of difficult issues.
We have a job discussing these issues within these shores, as
it were, and coming to conclusions without trying to do it across
25 very different countries, so I think that might be a bridge
too far at the moment. I do understand your concern about the
fact that people leave these shores and may not be protected in
the same way. Obviously people who go abroad and get procedures
that, for example, would not be available here are to some extent
putting themselves at risk because one of the arrangements we
have here is to protect the patient as well as to look at the
interests of the child, and in these matters they may be exposing
themselves in a variety of ways, as indeed, for example, women
using the "Man Not Included" sperm donation arrangements
are effectively putting themselves at some risk, or the men certainly
are anyway because they are effectively the fathers of those children
and, if they had been arranged under IVF arrangements, the genetic
fathers would not be the fathers of the children so there would
not be those risks. So going outside the framework puts you at
risk and we have to be clear that it is there to protect people
as much as anything else and to hope that we get within the shores
at least as much guarantee as we possibly can that people do not
go abroad.
Q1355 Dr Iddon: The HFEA have made
a decision to award Newcastle Fertility Centre a licence to clone
human embryos, or are attempting to, and there has been a judicial
review on that. If the judicial review is successful, what implications
can you see for stem cell research in that decision?
Miss Johnson: Is this not still
subject to some process, as it were? I would rather, if you would
not mind, not comment on something that is currently within the
legal processes because I think it could be prejudicial.
Q1356 Chairman: If it worked, what
difference do you think that might make? If reproductive cloning
worked—
Miss Johnson: Well, it is banned
and we do not have anything other than the view that we wish to
maintain the ban on reproductive cloning.
Q1357 Dr Iddon: We have met a view
in going around different establishments during our taking of
evidence that somebody is going to do human reproductive cloning—
Miss Johnson: Can I make it very
clear the government's view is we are not in favour of reproductive
cloning; let me make that absolutely plain. We can entertain scenarios
where it is happening but the government's view, and I do not
think we are likely to be changing our view as a government—
Q1358 Chairman: We are trying to
find out the rationale for it. Why? What is wrong with it?
Miss Johnson: I think it raises
all sorts of difficult issues and I think there are people here
around this table who do understand very well what those views
are. I do not want to go down the path of discussing this because
it is not up for discussion, it is illegal, and we have no plans
to change it.
Q1359 Dr Iddon: If it started to
happen, for example, in Italy—which would be surprising
to me but there is an Italian doctor involved as you know—what
would be your view if British women started to go abroad for the
treatment?
Miss Johnson: We would have to
take a view about that at the time, were it to happen. We are
not in the position of stopping people from travelling abroad
and we cannot question necessarily people's motives in any event
as they leave the shores of the country unless they are going
to be involved in something which is an offence here which would
be committed here. We are not responsible for legislation in other
countries at the end of the day and our citizens need to abide
by the laws in other countries when they are there. That is the
basic position. I would be concerned about it, as I am sure you
are, but we would have to look at what the issues would be and
how we would address those. We are very clear that we do not propose
to change the law here. The law is very clear here, it is illegal,
and we would wish to maintain that stance.
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