Robert
Key: If that information was available online, it would
not. I do not see a problem. However, that is the sort of detail that
will have to be looked into. I do not have the
answer.
Dr.
Iddon: Most of us are concerned about the privacy of the
individuals and their parents. Making the information available online
would not get around the objections that most of us have to putting
marks on the short birth
certificate.
Robert
Key: I accept that argument. The hon. Gentleman is
absolutely right; we should not go there. However, it does not destroy
the argument that it would be a way of indicating on everybody’s
birth certificate where they might seek further information if there
was any doubt. Its other great virtue is that it would undoubtedly put
some pressure on parents to come clean about their children’s
origins.
Dr.
Pugh: Having had the chance to reflect on our earlier
debate, I accept some of the concerns of donor networks that knowing
about someone’s genetic origins is not in the public interest,
except in rare circumstances. I can imagine that those conducting a
research project into the effect of the environment versus inheritance
would justifiably feel miffed if some of those who were the subject of
research for public health purposes turned out not to be the persons
who they thought had been genetically identified. Except in extreme
cases, there is no genuine public interest in the public, the employer
or anyone else having access to information about a person’s
origins. In a sense, the birth certificate is giving away the fact that
there has been a donor conception.
However, many
people accept that individuals have a right to know about their genetic
inheritance. To put it another way, it is wrong in all but the most
exceptional cases to withhold that information or to mislead people
about it. Although there is a sort of abstract right—one can
make inquiries if one thinks there is reason to do so—we have a
real right to know our genetic inheritance, and we have the capacity to
exercise it.
It also
involves someone else having the duty to disclose that information, but
who is that someone else? The onus could be put on the parents or the
state, but none the less someone ought to have a duty of disclosure. We
are struggling with how to balance that duty with other legitimate
rights—to privacy, to an undisrupted family life and so
on—but neither we nor the Government have a solution that
adequately addresses that problem.
The Minister
said that the Government were going to think about the matter, with a
review lasting more than four years. It may take four years to come up
with an adequate solution, but we should not pretend that there is not
a problem—and the Bill does not solve
it.
Dawn
Primarolo: The hon. Member for Southport summed up the
problem very well. The Committee is struggling—three suggestions
have been made on how it might be solved during this short
debate—to understand how we can balance obligations to the
donor, the parents and the donor-conceived child. The hon. Member for
Salisbury said that the point of this—if I am wrong, I am sure
he will correct me—was to ensure that we kept up the pressure
and encouraged parents to be truthful to the children from the
beginning. I concur with that view; it represents everything that the
Government are trying to do. We can all quote influential groups that
take a different view about why the birth certificate should be
annotated and why the new clause should be accepted, although some
might go further, taking the view that it is counterproductive and
would work against the objective pointed out by the hon. Member
for Salisbury.
I pray in aid
the Royal College of Nursing, which commented specifically on the new
clause rather than speculating about what it might mean. The RCN made
it clear that it supported the Government’s position as stated
in another place, because we needed to be clear about what we required
clinics to do, who must be notified, how any annotations on birth
certificates must be provided, and where the obligations lie. The RCN
ended up in the same place as the hon. Member for Salisbury. It decided
that it was best for the parents themselves to tell the
children. Looking
at some of the other stakeholders, it is not just the Royal College of
Nursing, a considerable and influential organisation that supports the
Government’s position. The Donor Conception Network, which
represents donor-conceived children and their parents, also does, and
has said so in submissions to Committee members with regard to birth
certificates. The Donor Conception Network goes further. It starts by
agreeing absolutely—again, who would not?—with the
proposition made by the hon. Member for Salisbury, which is that if
children are donor-conceived, their parents should communicate that
important information when they think it appropriate and by a definite
time, after which children have a right to know provided for in
legislation.
However, the
Donor Conception Network goes on to say that it is concerned that a
move to annotate birth certificates, in whatever fashion, may be
counter-productive. Parents who planned to tell their children about
the details of their conception may decide when registering the birth
not to give those details to the registrar because they do not want
that sensitive information made public. They may find it much harder to
tell the child if they have not been as open as they should
be. My
hon. Friend the Member for Bolton, South-East suggested that two birth
certificates might be the way forward, but the Donor Conception Network
takes the view, and I agree strongly, that it is necessary for the
Government to evaluate certain pieces of work alongside the review in
order to come to an understanding and proceed. That involves the Donor
Conception Network’s planned programme of work, which is
supported by the Department of Health, to promote telling children at
an early age that they are donor-conceived. The network is working
directly with parents to understand the concerns and barriers, and what
is necessary to move forward. The network’s programme is
concerned with non-identifying information—just the
straightforward fact that children are donor-conceived. We can all
understand the importance of the rights of donors and of guaranteed
anonymity. Going
further, the Department is funding a second project that will work with
prospective parents hoping to conceive using donated gametes. Again, we
seek to understand clearly what the barriers are and what can be done
to help. It is entirely reasonable to say, in what we have all said is
a difficult and sensitive matter, that we should pilot and evaluate
such work to ensure that we have the best way to communicate with
parents and prospective parents. We should get the feedback of
information from it, include it within the review on birth certificates
and what should be on them and come to the right conclusion. A decision
made in haste might not be the right one. We might end up cutting
across the important principle, identified by the hon. Member for
Salisbury, of parents informing, explaining and discussing issues with
their donor-conceived children.
That is why the
Government continue to resist putting any compulsion in the Bill to
move now. We think that it is sensible to collect the information,
speak directly to those concerned, and make a judgement on that basis
and no other. I hope that the hon. Member for Boston and Skegness will
not press his new clause to a vote, but if he does, with regret and for
the best of reasons, I will ask my hon. Friends to oppose
it.
Mark
Simmonds: I am grateful to all those who contributed to
the debate on new clause 1. My hon. Friend the Member for Salisbury
made some very pertinent points and some of the issues that he
mentioned about the Minister’s review deserve much more detail
and consideration. Today’s exchange demonstrates the
difficulties in coming to a conclusion. I understand and accept that,
but none the less I do not regret having tabled the new clause for
debate and discussion; it is important for us to put such concerns,
however complex and challenging, on the record.
I am not
convinced that the Minister should be prepared to accept a four-year
time period in which this should be reviewed. Pressure should be put on
whoever is responsible for that review to come to a conclusion, in
consultation with the necessary people, in a much shorter time scale. I
was also intrigued by the Minister’s defence and praying in aid
outside organisations to defend the Government’s position, as
there does not seem to be one. The Government’s position seems
to be that this is complex and that there should be a review that
reports in four years’ time.
I understand
why many organisations—those who represent donors and others
such as the Royal College of Nursing—do not support the second
(a) in new clause 1 about
placing “a
symbol to denote the fact of donor
conception” on
the original birth certificate. I understand and agree with that, but I
felt that without that in the new clause, we would not be able to
debate the specific issue.
Of course, the
priority must be for parents to inform their children about their
origins, in consultation with counselling and other facilities that are
available. However, I also think that very detailed consideration must
be given to the necessity, where possible, of allowing a child to
understand their genetic make up and where they come from as early as
possible. A sensible and easy way of doing that is through some
mechanism such as an extended birth certificate or via access to other
information. I will withdraw new clause 1, but I would like to reserve
the right to return to the issue on Report. I beg to ask leave to
withdraw the motion.
Motion and
clause, by leave, withdrawn.
New Clause
5Further
general functions of
Authority ‘In section 8(1) of
the 1990 Act (general functions of the Authority) after paragraph (a)
insert— “(aa)
give advice or make submissions to the Parliamentary Human
Fertilisation and Embryology Committee established under section
(Parliamentary Human Fertilisation and Embryology Committee)
of the Human Fertilisation and Embryology Act
2008,”.’.—[Dr.
Iddon.] Brought
up, and read the First time.
Dr.
Iddon: I beg to move, That the clause be read a Second
time.
The
Chairman: With this it will be convenient to discuss new
clause 6— Parliamentary Human Fertilisation and Embryology
Committee ‘(1) There shall be a
Committee of Members of both Houses of Parliament, to be called the
Parliamentary Human Fertilisation and Embryology Committee, to consider
human fertilisation, embryology and related ethical issues, and to make
recommendations. (2) The
Committee shall have power to send for persons, papers and records, to
report from time to time, and to appoint specialist advisers either to
supply information which is not readily available or to elucidate
matters of complexity within the Committee’s order of
reference. (3) The Human
Fertilisation and Embryology Committee shall consist of fifteen members
of the House of Lords nominated by the Lord Speaker and fifteen members
of the House of Commons nominated by the Speaker of the House of
Commons, to be appointed on the passing of this Act to serve for the
duration of the present Parliament and thereafter to be appointed at
the commencement of each Parliament to service for the duration of that
Parliament. (4) Any causal
vacancy occurring by the reason of the death, resignation, or
incapacity of a member of the Human Fertilisation and Embryology
Committee shall be filled by the nomination of a member by the Lord
Speaker or the Speaker of the House of Commons, as the case may
be. (5) The powers and duties
of the Human Fertilisation and Embryology Committee may be exercised
and discharged by any twelve members thereof, and the Committee shall
be entitled to sit and transact business whether Parliament be sitting
or not, and notwithstanding a vacancy in the membership of the
Committee. (6) Subject to the
provisions of this Act, the Human Fertilisation and Embryology
Committee may regulate its own
procedure.’.
Dr.
Iddon: I move the new clause in my name and those of my
hon. Friends the Members for Brighton, Kemptown and for Norwich,
North.
There was an
expectancy in the other place that this House would give guidance on
the proposal to create a national human bioethics committee. On Second
Reading in this House there was, unfortunately, little or no discussion
about that proposal. In her closing speech in the discussion, Baroness
Royall of Blaisdon
said: “The
Government have made clear their view that there is value in the
consideration of bioethical issues in Parliament. We said as much in
our response to the committee of both Houses that scrutinised the draft
version of this Bill, which recommended the establishment of a
parliamentary standing committee on
bioethics.” She
went
on: “The
Government see merit in a parliamentary standing committee on bioethics
but do not see a national human bioethics commission as the way
ahead.”—[Official Report, House of Lords, 28
January 2008; Vol. 698, c.
500.] Is
it right that the Human Fertilisation and Embryology
Authority—the HFEA—a quango, makes major ethical
decisions, mainly without consulting the rest of us, and especially not
Parliament? That is not to say that I am not grateful, however, for all
the thought that the HFEA has given to bioethical issues in this policy
area. Nevertheless, it has been difficult for it on occasions, and it
has sometimes made the wrong decision, in my opinion, which it has
occasionally reversed after further consideration and in the light of
more
evidence.
2.15
pm Personally,
I would like to see a parliamentary bioethics committee established to
consider all bioethical issues, relating to animals or humans. I have
tabled these two amendments to sound out right hon. and hon. Members of
this Committee today, and to seek the views of my right hon. Friend the
Minister. The amendments have been framed in a narrower way than I
would have preferred, so that they stand within the scope of
the
Bill. The
chief medical officer, Professor Sir Liam Donaldson, told the
pre-legislative scrutiny Committee for this Bill:
“We
have had, generally, in this country a deficit in medical ethics, both
in the input into some of our decisions over the years, and also, in
medical
ethicists.” On
28 January 2008, Baroness Kennedy of the Shaws, who chaired the Human
Genetics Commission for eight years, said in the other
place: “I
felt there was a discomfort in some of those issues being with the
HFEA, which is seen by the public as a regulatory body. It is confusing
to have the regulatory function and an advisory function on ethics
combined".—[Official Report, House of Lords, 29 January
2008; Vol. 698, c.
490.] I share
her discomfort.
Alan Doran,
acting chief executive of the HFEA, told a symposium at the BioCentre
in November 2007:
“We do
not claim to be a National Bioethics Committee. We are not a body whose
primary function is to resolve ethical issues. I do not think the HFEA
was set up as an ethics
commission”. Some
opponents of the establishment of a national or parliamentary human
bioethical committee have pointed out the existence of the Nuffield
Council on Bioethics, which is financed by the Nuffield Foundation and
the Wellcome Trust. However, it decides on the topics of debate, not
Parliament.
A number of
other organisations also cover bioethics, including the Genetic
Interest Group, the British Medical Association, which publishes
“Medical Ethics Today”, the General Medical
Council’s standards and ethics committee; the Royal Society of
Medicine, and the Academy of Medical Sciences. I should also mention
the Scottish Council on Bioethics, to which reference has already been
made today in this Committee. Again, these organisations do not dance
to the tune of Parliament, but they are a valuable source of
information. With
respect to research, we should not forget the important role that local
medical ethics committees play. We could consider that there is a
double lock on research of this kind, one local lock, and one national
lock, namely, the HFEA. None of those bodies, however, is responsible
for making the law, as we
are. Governments
or Ministers have established national bioethics committees in a number
of other countries, including Austria, Belgium, Denmark, France,
Germany, Italy, the Netherlands, Portugal, Sweden and Switzerland, as
well as Australia and the USA. However, we must be a little cautious
when national committees are created in that way. I cite, for example,
what has happened to the US committee. It has become very politicised,
if one looks at its proceedings.
Indeed, in its
2005 report entitled “Human Reproductive Technologies and the
Law”, the former House of Commons Science and Technology
Committee recommended the formation of
“a single
commission to develop policy issues relating to assisted reproduction,
embryo research and human genetics”.
For right hon.
and hon. Members who wish to establish a national human bioethics
commission, I recommend that they read Baroness Warnock’s
arguments against the proposal in the 2008 Whitsun edition of
“Science in Parliament”, which has recently arrived on
hon. Members’ desks, and in The Observer of 13
January 2008. Referring to a parliamentary human bioethics committee,
she said in The Observer
that “the
overriding merit of establishing such a committee, rather than a new
commission, is that it would be a recognised part of parliamentary
procedure, often part of that procedure that leads to the passage of a
law.” In
conclusion to her piece, Baroness Warnock
said: “I
believe that setting up a new style of
committee”— she
was referring to a national human bioethics
commission— “independent
of Parliament would seem to make the role of Parliament less central,
its responsibility and its authority less great. That would, in my
view, be an actual weakening of the rule of
law.” I
happen to agree with her
views. I
am informed that setting up a parliamentary human bioethics committee,
or a committee of the type mentioned in my amendments, is not a
legislative issue. Perhaps the Minister can confirm that. However,
setting up a national bioethics commission, I believe, would require an
amendment to the Bill, but I am against such a proposal. Of course, ad
hoc committees have been established in Parliament before to consider
bioethical issues. Lord Walton of Detchant, for example, chaired a
Select Committee on Medical Ethics from 1992 to 1993, which considered
the law on euthanasia and assisted
suicide. In
conclusion, I believe that we should have a statutory, human bioethics
committee to consider the difficult issues that we have looked at today
and during the passage of the Bill through Parliament. I look forward
to hearing the views of the Committee on the issue, including those of
my right hon. Friend the
Minister.
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