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Session 2007 - 08 Publications on the internet General Committee Debates Human Fertilisation and Embryology Bill [Lords] |
Human Fertilisation and Embryology Bill [Lords] |
The Committee consisted of the following Members:Hannah Weston, Celia
Blacklock, Committee Clerks †
attended the Committee Public Bill CommitteeTuesday 10 June 2008(Morning)[Mr. Jim Hood in the Chair]Human Fertilisation and Embryology Bill [Lords](Except clauses 4, 11, 14 and 23, schedule 2 and any new clauses or new schedules relating to the termination of pregnancy by registered medical practitioners)10.30
am
The
Chairman: Before we begin, I should say that, if
hon. Gentlemen wish to remove their jackets, they are welcome to do
so.
Clause 24Register
of
information Question
proposed, That the clause, as amended, stand part of the
Bill. Dr.
Evan Harris (Oxford, West and Abingdon) (LD): I take this
opportunity to welcome you to the Chair, Mr. Hood. We have
made excellent progress and I am sure that we shall do so today. As I
said during the debate on the amendments to the clause, I have a couple
of brief questions to ask. What is the basis for the current amount of
data that is collected? The main problem that has been raised with me
is the regulatory burden of a full amount of information given in the
register of information for all treatment cycles, the majority of which
do not result in a
pregnancy. We
have debated why it is necessary to maintain a register of information
in respect of the treatments that produce a pregnancy and a child.
There are at least two main reasons. The first is to enable contact to
be made in the future, if requested by a child born through in vitro
fertilisation, particularly in respect of donor gametes and
non-identifying or identifying information about the genetic parent
when the person is not the legal or social parent. The second reason is
to ensure that the data is accurate on the outcomes of IVF clinics,
given the nature of the business and the relatively high stakes
involved compared with other businesses, and thus the potential
vulnerabilities of the patients, who are the consumers of the business.
The clinicians understand those two reasons, but they ask why it is
necessary to have identifying information in such great detail about
all patients even when a pregnancy does not result or is not known to
result. I imagine that reasons will be given for such action, but I
just want to deal with them in advance.
It is
necessary to retain information in case of adverse effects of some
treatment. However, in that sense, it is not different from any other
treatment. It is necessary for medical records to include information
so that it is
possible to track any potential problems caused by drugs. The potential
for risks would be the same as that posed by full medical treatment,
but for no other full medical treatment is there a central database,
especially on treatment that does not result in pregnancy on which a
huge amount of information is collected with patients’ names
attached. The clinics that have contacted me about such matters
understand that it might be necessary to provide information centrally
and use patient numbers, but identifying patients would provide an
additional burden that they consider unnecessary unless pregnancy
results, in which case such a situation should be possible. I have
dealt with the second argument for the need to collect the data and
information about outcomes so that success rates are recorded. However,
that can be done without the need for detailed, identifying information
as set out under the
Bill. Will
the Minister say whether the Human Fertilisation and Embryology
Authority has received the same representations as I have about the
extent to which the regulatory burden of the register of information
and requirements will be onerous? Does it recognise that there might be
scope for reducing the amount of information, particularly identifying
information, that is held on a central database for no good reason over
and above the reason that such information is available in medical
notes on safety and outcome measures, when no child is produced or
known to have been produced? If it recognises that that is a regulatory
burden, has any consideration been given to how it could be reduced?
While that might have been appropriate in 1990, standard IVF and
insemination, particularly where, sadly, it does not result in a
pregnancy, are now routine medical techniques and
interventions.
It is
peculiar that for those routine medical interventions, a great amount
of information must be submitted to a central database which has not as
yet been used for any research purpose. Without having a central
database of identified patients, it is still possible to do research
where non-licensed treatments—which could be more extensive in
terms of drugs and surgery—are not subject to such requirements.
It is a valid point, and I would be interested to hear the
Minister’s response.
Mark
Simmonds (Boston and Skegness) (Con): I join the hon.
Member for Oxford, West and Abingdon in welcoming you to the Chair,
Mr. Hood, and let me say how much I am looking forward to
serving under your guidance and chairmanship. I have three quick
questions for the Minister on clause 24 stand part that we did not
manage to cover in the debate on the amendments.
The first
point is about counselling. Under the clause, the donor is informed
when a request has been made for information about them. In most
circumstances, there will be many years between the donation that leads
to the genetic offspring and the genetic offspring asking for
information about the donor. It is a minimum of 18 years, but it could
be much longer. Clearly, I welcome the stipulations in schedule 4 that
relate to counselling for the person requesting the information, but
what about counselling for the original donor? Obviously, it should not
be compulsory or mandatory, but there may be significant changes of
circumstances—the donor’s life may have changed
dramatically, they may be in a marriage or another relationship and it
could be extremely
traumatic to bring such a new piece of information into their life. I
wonder why no counselling is offered in the Bill for the original
donor.
The second
point is about the disparity in ability to request information at
different ages. As I understand it, the donor-conceived person is able
to request non-identifiable information at 16, but other information is
available only at 18. Perhaps the Minister could put on the record the
logic behind that particular difference. It may be simply that people
are legally allowed to be in sexual relationships at the age of 16,
while 18 is the general cut-off point for moving into
adulthood.
The third
point is about proposed new section 31ZB, which deals with checking
whether people in intimate relationships are genetically related. It is
about getting the permission of the other party in that intimate
relationship. What happens if both parties in that intimate
relationship are under the age of 18, and therefore only able to
receive non-identifying information, when the point of getting that
information is specifically to identify whether the partner in that
intimate relationship is related to them?
The
Minister of State, Department of Health (Dawn Primarolo):
Good morning, Mr. Hood; I welcome you to the Chair. I will
deal first with the questions raised by the hon. Member for Oxford,
West and Abingdon. I wish to make a request to help me focus on
answering the points raised. I say now that there is absolutely no
criticism implied, bit it is difficult when the hon. Gentleman puts the
case and then put the Government’s case as well. He answers his
own questions and ends with a series of questions that he has already
answered in the course of what he has said. I will repeat them on this
occasion as the Government’s position as well, but we need to
try to focus.
The hon.
Gentleman asked specifically about the disclosure of information
regarding patients, particularly where there have been unsuccessful
cycles of IVF. He went on to give the answer. As he pointed out, the
answer is, first, that the information has to be collected because at
the beginning of the cycle it cannot be known that the cycle is going
to be unsuccessful—that there will not be a resultant child.
Secondly, the information could be relevant to subsequent courses of
treatment and follow-up cycles for the individual. Thirdly, the
collection of information clearly provides for long-term consideration
and research into fertility drugs and comparing the effects on women,
whether there is a pregnancy or not. The information provides the basis
for further research. Finally, there may be other important areas in
the consideration of treatment—that links back to the question
of identifying information, particularly follow-up information.
Therefore, the hon. Gentleman put the case for why the proposals are as
they are, and he answered on behalf of the Government’s position
as
well. The
hon. Gentleman asked two further questions. The first was about
representations that he had received. He asked whether the Government
had received the representations that he had received about the
collection of information and asked what was our response? Yes, we did
receive those representations. It was not a majority view that the
requirements were onerous—there were a few of that view. We
considered the information powers, because we appreciated the comments.
However, we
remained of the view that it was important for the HFEA to collect data
for all licensed treatments and that we were striking the correct
balance between protecting the confidentiality of patients and allowing
disclosure under justifiable circumstances. The BMA supported us in
that approach. The hon. Gentleman’s second question was
specifically geared to how the provision might create regulatory
burdens. My response is that the HFEA’s new electronic data
interchange system with clinics should certainly help to ease any
feelings that the there is an undue burden of collection of
information. In
putting all of those points together, the hon. Gentleman clearly
justified the system. We considered some of the views put before us and
discussed the matter further. We came to the conclusion that we had
struck the right balance. We were supported in that by other
stakeholders. We believe that the regulatory burden will be
considerably alleviated by the system of electronic
exchange. The
hon. Member for Boston and Skegness asked a series of questions,
particularly about the disparity—which I will deal with
first—between the information to which people are given access
at 16 and 18. Again, he touched on the answer in his remarks. We have
spoken to all of the stakeholders and, of course, the Committee does
not come cold to the discussion. We are talking about a consultation of
more than a year, with the consultation results published, followed by
draft legislation and the pre-scrutiny stage, and then consideration in
another place, before the proposals get here. We have had the
opportunity for consideration a number of times. The view was that 18
was the suitable age—in terms of other legal requirements and
maturity—to give people access to identifying information about
donors. This is, of course, significant personal information that could
have a dramatic impact. We cannot be sure that the individual knows
already that they are the result of a donation of either sperm or egg.
We are relying on the parents to have had discussions with their son or
daughter. It was agreed that in extreme cases where the individual has
not been informed, 18 is the sensible point for access to
information. 10.45
am The
hon. Member for Boston and Skegness also asked why we set the age for
access to non-identifying information at 16. I am assured that access
at that point is sufficient to ensure that within the records there is
no family connection. At that point it is not necessary to know the
identity; it is enough to be assured. I am not clear whether in extreme
circumstances there would need to be a loop back into the information,
and the HFEA would need to consider whether or not identifying
information was in the best interests of the individual. I will check
that matter and come back to the hon. Gentleman. There are two steps.
One applies to, for instance, an individual who at age 16, with
consent, is going to get married. It also applies where the parents
know that their son or daughter is planning to live with or, as the
hon. Gentleman said, be sexually active with a partner, and they want
to make sure of the information.
Then the
hon. Gentleman asked about counselling for the donor. That was covered
in previous debates about counselling when the donor becomes involved
in the IVF programme. Of course, an individual has to be aware that the
request for information could happen
rather a long time ahead and their circumstances could be different by
then. That is part of the complexity of counselling when an individual
is considering being a donor; it must be thorough. It might be the case
that the donor would have access to counselling information at the time
that the request for identification was made, just in case. That is not
an absolute condition, but it would have to come back round the loop.
Counselling would be part of their preparation at the very beginning,
as they took the decision to be a donor, but would be accessible again
at the time when identifying information could be made available. I
understand that there is provision for that. These are delicate
points.
The hon.
Member for Boston and Skegness asked a question about new section 31ZB
and the fact that it does not enable the applicant to find out
identification. It does, however, provide access to the information to
ensure that there is not an issue that would lead to the need to
identify the donor. Should, for some reason, the result that came back
from the HFEA raise an issue of concern, that would open up the debate
automatically, regardless of age, because the individual would need to
know why. Imagining all the circumstances, it is difficult to see that
there would not be some pressure on the system at that point. The HFEA
would have to deal with that. I hope that I have dealt with the points
that were raised by both the hon. Member for Boston and Skegness and
the hon. Member for Oxford, West and Abingdon. On the question of
consent and information, they have tabled amendments to the next clause
that specifically focus on those issues and when consent is needed for
the passing on of information. Perhaps some of the other points will be
picked up again then.
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