Human Fertilisation and Embryology Bill [Lords]
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 everybodys 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 childrens 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 someones 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 persons 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 rightone can make inquiries if one thinks there is reason to do sowe 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 rightsto privacy, to an undisrupted family life and so onbut 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 problemand the Bill does not solve it.
Dawn Primarolo: The hon. Member for Southport summed up the problem very well. The Committee is strugglingthree suggestions have been made on how it might be solved during this short debateto 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 thisif I am wrong, I am sure he will correct mewas 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 Governments 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 Governments 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 absolutelyagain, 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 Networks 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 networks programme is concerned with non-identifying informationjust 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 Ministers review deserve much more detail and consideration. Todays 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 Ministers defence and praying in aid outside organisations to defend the Governments position, as there does not seem to be one. The Governments 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 organisationsthose who represent donors and others such as the Royal College of Nursingdo 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 5
Further 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.
The Chairman: With this it will be convenient to discuss new clause 6Parliamentary 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 Committees 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 Authoritythe HFEAa 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.
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 Councils 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 Warnocks 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.
|©Parliamentary copyright 2008||Prepared 13 June 2008|