| Previous Section | Index | Home Page |
“A cord blood bank is potentially positive for any child having to undergo a bone marrow transplant but the specific nature of the disorder of Fanconi Anaemia, the commonest inherited bone marrow failure condition, is that a related sibling match will always have significantly less mortality and morbidity than an unrelated donor match irrespective”
“from an unrelated adult donor or unrelated cord blood.”
Mr. Burrowes: I am grateful, particularly for the hon. Gentleman’s reference to cord blood. It is the 20th anniversary of the first cord blood transplant specifically for fanconi anaemia; it was performed in France by Professor Elaine Gluckman, the major pioneer in the field. Should we not move heaven and earth, to cite the Minister’s words, to ensure that we do not just throw away 98 per cent. of cord blood and so that we can use it as a resource to provide cures for fanconi anaemia without going down the ethically perilous route of saviour siblings?
Tom Levitt: I am sure that there is a role for cord blood banks. In this particular case, however, David’s is one of the six families who have been licensed for the saviour sibling technique precisely on the grounds that there is no alternative treatment. Were David to have a sibling-saviour transplant, there would be a 95 per cent. chance of success in the short term. He would spend just three weeks in hospital and live the rest of his life as normal.
Conditions such as fanconi anaemia are very rare, and that may be why only six families are licensed for the treatment at present. David’s father has explained why his family have embarked on the process:
“We would like to save his life. We would also like to have an unaffected child that will outlive us and that can give us hope in our lives...For most people who choose to have an opinion, this Bill will fortunately never affect them. This Bill is for families like us...Other families worry about what choice of secondary school they will send their child to, we worry about whether our child will be alive next year. Our son already asks about bone marrow, transplantation, and death...we are waiting with trepidation for the day he asks us to explain his condition.”
Patrick Hall:
My hon. Friend was present when the hon. and learned Member for Torridge and West Devon (Mr. Cox) questioned the suitability of parents’ engagement in decisions about the matters under discussion. Does my hon. Friend not agree that the
process through which his constituents have gone—the counselling and expert advice that they have received—places them in a stronger position than most people will ever be in for taking an informed decision?
Tom Levitt: My hon. Friend anticipates what I was just about to say about David’s parents. They are both doctors and are very well informed about what they are asking of their future child. It is also interesting that they are both Catholics. They are concerned that if they go ahead with the technique, they will be stigmatised among some of their friends.
Judy Mallaber: Did my hon. Friend hear his constituent speaking on the news at lunch time? Anyone else in the Committee who heard him will have had no doubt about the rationality of his decision, his love for his existing child and the love that he would give a second child. The decisions were taken in a very rounded way and were reached in difficult ethical circumstances, given the personal beliefs with which the parents had to contest. My hon. Friend’s constituent should be a welcome example for anybody in the House.
Tom Levitt: My hon. Friend is right. I knew that the interview was taking place, although I did not hear it. However, I have been in e-mail correspondence with my constituent about this issue in the past few days.
David’s parents are desperate that their child and others with similar conditions should be able to live. They have asked me to beg the Committee to let David live, accept the proposals for savour siblings outlined in the Bill and ensure that when that choice is the right and only way forward, it is not ruled out for families such as David’s.
Dr. Evan Harris: This excellent debate has gone far and wide, well beyond the issue of saviour siblings. In fact, I am surprised that the debate has ended somewhat earlier than planned. Nevertheless, I should like to offer the following comments to the Minister and the Committee about my amendments.
Amendments Nos. 24 to 30 question whether “abnormality” is the right term to use for the genetic characteristic to be tested in pre-implantation genetic diagnosis. I accept that, as the Minister said, my amendments go further than the provisions of the Bill. But I am concerned that the Bill may not go far enough to capture all the conditions that are not single-gene mutations, and therefore abnormalities, that one might legitimately want to test for with the same threshold of seriousness. The Minister says that we would need to provide examples in order to persuade her that the existing wording was not sufficient, and that is the challenge. If, for example, one could identify two normal variants—causing a life-threatening disease—that could not be called abnormalities, perhaps the Government would look at the matter again. I shall ask the clinical advisers whom I have been hearing from—including Professor Martin Bobrow, who chaired the Academy of Medical Sciences working group into another aspect of the Bill—whether they can provide some specific examples.
The second area is that of licences for therapy, which is dealt with by amendment No. 30 and associated amendments. I listened carefully to the Minister, who
made it clear that the Bill allows embryos to be created and used for research, which in itself should be sufficient to cover any therapeutic use. She gave a second reason, which I accept, that the therapeutic use of cells will be covered by the Medicines and Healthcare products Regulatory Agency, the Human Tissue Authority and not the Human Fertilisation and Embryology Authority.
Moreover, any embryos from which stem cells are derived will inevitably have research associated with them, and therefore could be covered by a research licence. But I question whether that is the case in every situation. Briefly, I want to mention four scenarios and see whether the Minister recognises that there might be a problem.
There might be an organisation that is a specialist in the derivation of embryonic stem-cell lines in other jurisdictions, which applies to the HFEA for a licence to use embryos to create stem-cell lines that it intends to pass on to another organisation to use for research or therapy. How would such an applicant be able to specify what research was done if it is not doing the research? The current Bill requires the people producing the embryos to be the people associated with the research licences, which may stifle innovation, investment and the production of stem cells.
Secondly, cell-based therapy might be so well established in the future that only quality assurance need be carried out, without a research protocol, prior to therapy. In such a scenario, the embryo would be created and then used for therapy without a research step. The same distinction between quality assurance and audit on the one hand, and research on the other, is already made in the Human Tissue Act 2004 for the use of tissue. The Minister’s argument depends on there being no possible therapeutic use that did not require a form of clinical or pre-clinical research on those cells, and I am not convinced that that is certain.
The assumption that the therapeutic use of ES cells will always follow formal research during the lifetime of the legislation is dangerous because if phase 1 and phase 2 trials are successful, there will be clinical pressure to use ES cells as experimental treatment, albeit licensed by the MHRA, outside of the phase 3 research protocol. Alternatively, phase 3 trials might be successful, and it would be questionable whether one could identify a proper research application, beyond quality assurance, within the subsequent use of the newly derived ES cell lines created under research licence. The Minister may say that that is dealt with, and if she agrees to put a summary of the legal advice in the Library, I shall look at it.
Finally, if therapeutic cloning works, it might be possible to provide autologous stem-cell therapy for a patient using their own somatic cells. That would be experimental therapy, not research, if it were used, and such a situation might apply in the lifetime of the Bill. I am concerned that the Government are not adequately future-proofing the Bill by accepting the relevant amendment, and we shall have to examine that question in the weeks to come. It is not my intention, however, to press it to a Division now.
I turn to amendment No. 15, in the name of the hon. Member for Boston and Skegness (Mark Simmonds), which I did not address in my earlier comments. It proposes to change the definition of serious disease to
a disease that causes a serious impairment of quality of life. He defended that on the basis that his definition was tighter and less open to interpretation. I questioned that in interventions. To be fair, he kindly accepted that he was not sure that it was tighter.
9.45 pm
Mark Simmonds: The hon. Gentleman will recall that the Minister confirmed that my interpretation was correct and his was incorrect.
Dr. Harris: I question whether the definition is tighter, but I do not believe that it should be because the decision should be left to doctors and patients, under the regulator’s guidance. It is difficult for us to decide at the outset that something is not serious when the regulator, the doctor and the patient might consider it serious. When pre-natal diagnosis is done through amniocentesis, with an indication for termination of pregnancy, not at an embryonic but a foetal stage, weeks into the pregnancy, there are no criteria for seriousness. It is illogical to have a high threshold for embryonic steps to avoid illness when amniocentesis and pre-natal diagnosis in an established pregnancy require no such threshold. Doctors have written to me saying that they do not understand that distinction: why one can terminate a pregnancy without a seriousness threshold—the doctors and patients decide—when we set such a threshold for embryo testing, before a pregnancy is established.
Let me consider the important speech of the hon. Member for South Derbyshire (Mr. Todd) about the extent to which it is appropriate to conduct invasive procedures on a child to derive tissue for transplant to a sibling. I am a member of the BMA Medical Ethics Committee. The BMA wrote that it is not worried about that ethical problem because there is already provision for taking the child’s best interests into account. In the case of disagreement by doctors and parents or between parents, a court must be involved. Paragraph 44 of the Human Tissue Authority code of practice states clearly, if briefly:
“Courts have identified certain important decisions which require court approval where one person with parental responsibility consents against the wishes of another. If there is any dispute between persons with parental responsibility or any doubt as to the child’s best interest, the matter should be referred to court for approval.”
Invasive procedure could be sanctioned only when there is no doubt that it is in the child’s best interests. Of course, that is relevant to every sibling, not only the small minority of saviour siblings, who may be a match for an affected child. It is wrong to suggest, in the few cases that the Bill covers, that there is a problem with common law, medical ethics and the guidance to doctors about the best interests of a child for invasive procedures if we do not extend those provisions to the many more children in that position. The Bill strikes the right balance on saviour siblings and I urge hon. Members to bear that in mind.
I respect the commitment of the hon. Member for Enfield, Southgate (Mr. Burrowes) and the way in which he presented amendment No. 4, on which I am sure the Committee will divide. However, it is clear
from advisers on cord blood banking that, however much one expands cord banks, it will not remove the need in a minority of cases for saviour siblings. I hope that he accepts that I can find no medical opinion, including from those who run the banks, to support the view that expansion would do away with the need for legislation on saviour siblings in a minority of cases.
I beg to ask leave to withdraw the amendment.
Amendment, by leave, withdrawn.
Clause 11 ordered to stand part of the Bill.
Activities that may be licensed under the 1990 Act
Amendment proposed: No. 15, page 55, leave out lines 24 to 28 and insert—
‘(i) a gender-related physical or mental disability which is life-threatening or severely impairs their quality of life,
(ii) a gender-related serious illness which is life-threatening or severely impairs their quality of life, or
(iii) any other gender-related serious medical condition which is life-threatening or severely impairs their quality of life— [Mark Simmonds.]
Question put, That the amendment be made:—
The Committee divided: Ayes 149, Noes 318.
AYES
Alexander, Danny
Arbuthnot, rh Mr. James
Atkinson, Mr. Peter
Baker, Norman
Baldry, Tony
Bellingham, Mr. Henry
Benyon, Mr. Richard
Beresford, Sir Paul
Binley, Mr. Brian
Blunt, Mr. Crispin
Bone, Mr. Peter
Brady, Mr. Graham
Brazier, Mr. Julian
Brokenshire, James
Brooke, Annette
Browning, Angela
Burns, Mr. Simon
Burrowes, Mr. David
Burstow, Mr. Paul
Burt, Alistair
Burt, Lorely
Campbell, Mr. Gregory
Chope, Mr. Christopher
Cormack, Sir Patrick
Cummings, John
Cunningham, Mr. Jim
Cunningham, Tony
Davey, Mr. Edward
Djanogly, Mr. Jonathan
Dodds, Mr. Nigel
Drew, Mr. David
Duddridge, James
Duncan Smith, rh Mr. Iain
Dunne, Mr. Philip
Evans, Mr. Nigel
Evennett, Mr. David
Fallon, Mr. Michael
Farron, Tim
Field, Mr. Mark
Fitzpatrick, Jim
Fox, Dr. Liam
Francois, Mr. Mark
Garnier, Mr. Edward
Gibb, Mr. Nick
Goodman, Helen
Goodman, Mr. Paul
Gove, Michael
Gray, Mr. James
Green, Damian
Greening, Justine
Grieve, Mr. Dominic
Hammond, Mr. Philip
Hammond, Stephen
Hancock, Mr. Mike
Harper, Mr. Mark
Hayes, Mr. John
Heathcoat-Amory, rh Mr. David
Hendry, Charles
Herbert, Nick
Hoban, Mr. Mark
Hollobone, Mr. Philip
Horam, Mr. John
Hosie, Stewart
Howard, rh Mr. Michael
Howarth, Mr. Gerald
Hughes, Simon
Hunt, Mr. Jeremy
Hurd, Mr. Nick
Jack, rh Mr. Michael
Jackson, Mr. Stewart
Jones, Mr. David
Kaufman, rh Sir Gerald
Kawczynski, Daniel
Khan, Mr. Sadiq
Kilfoyle, Mr. Peter
Kirkbride, Miss Julie
Lansley, Mr. Andrew
Leigh, Mr. Edward
Liddell-Grainger, Mr. Ian
Lidington, Mr. David
Loughton, Tim
Maclean, rh David
MacNeil, Mr. Angus
Main, Anne
Malins, Mr. Humfrey
Marsden, Mr. Gordon
Mates, rh Mr. Michael
Maude, rh Mr. Francis
McAvoy, rh Mr. Thomas
McCrea, Dr. William
McLoughlin, rh Mr. Patrick
Mercer, Patrick
Miller, Mrs. Maria
Milton, Anne
Moss, Mr. Malcolm
Mudie, Mr. George
Mulholland, Greg
Mundell, David
Murphy, Mr. Denis
Newmark, Mr. Brooks
O'Brien, Mr. Stephen
Paisley, rh Rev. Ian
Paterson, Mr. Owen
Penrose, John
Pickles, Mr. Eric
Pope, Mr. Greg
Pound, Stephen
Prentice, Bridget
Prisk, Mr. Mark
Pritchard, Mark
Randall, Mr. John
Redwood, rh Mr. John
Reed, Mr. Andy
Rifkind, rh Sir Malcolm
Robertson, Hugh
Robertson, Mr. Laurence
Robinson, Mrs. Iris
Rowen, Paul
Roy, Mr. Frank
Russell, Bob
Sarwar, Mr. Mohammad
Selous, Andrew
Shepherd, Mr. Richard
Simmonds, Mark
Simpson, David
Simpson, Mr. Keith
Singh, Mr. Marsha
Spelman, Mrs. Caroline
Spicer, Sir Michael
Spring, Mr. Richard
Stanley, rh Sir John
Streeter, Mr. Gary
Stuart, Mr. Graham
Swayne, Mr. Desmond
Taylor, David
Thurso, John
Todd, Mr. Mark
Turner, Mr. Andrew
Twigg, Derek
Walker, Mr. Charles
Waterson, Mr. Nigel
Watkinson, Angela
Willetts, Mr. David
Williams, Mark
Williams, Mr. Roger
Wilson, Mr. Rob
Wood, Mike
Wright, Jeremy
Younger-Ross, Richard
Tellers for the Ayes:
Mike Penning and
Mr. Robert Syms
NOES
Abbott, Ms Diane
Ainsworth, rh Mr. Bob
Alexander, rh Mr. Douglas
Allen, Mr. Graham
Anderson, Mr. David
Armstrong, rh Hilary
Austin, Mr. Ian
Austin, John
Bailey, Mr. Adrian
Balls, rh Ed
Banks, Gordon
Barlow, Ms Celia
Barrett, John
Barron, rh Mr. Kevin
Bayley, Hugh
Beckett, rh Margaret
Begg, Miss Anne
Benn, rh Hilary
Bercow, John
Berry, Roger
Betts, Mr. Clive
Blackman, Liz
Blears, rh Hazel
Borrow, Mr. David S.
Boswell, Mr. Tim
Bradshaw, Mr. Ben
Brake, Tom
Breed, Mr. Colin
Brennan, Kevin
Brown, rh Mr. Gordon
Brown, Lyn
Brown, rh Mr. Nicholas
Brown, Mr. Russell
Browne, rh Des
Browne, Mr. Jeremy
Bruce, rh Malcolm
Bryant, Chris
Buck, Ms Karen
Burden, Richard
Burnham, rh Andy
Byers, rh Mr. Stephen
Byrne, Mr. Liam
Cable, Dr. Vincent
Caborn, rh Mr. Richard
Campbell, rh Sir Menzies
Carmichael, Mr. Alistair
Carswell, Mr. Douglas
Cawsey, Mr. Ian
Chaytor, Mr. David
Clapham, Mr. Michael
Clappison, Mr. James
Clark, Greg
Clark, Ms Katy
Clark, Paul
Clarke, rh Mr. Charles
Clegg, rh Mr. Nick
Clelland, Mr. David
Clifton-Brown, Mr. Geoffrey
Coaker, Mr. Vernon
Coffey, Ann
Cohen, Harry
Connarty, Michael
Cooper, Rosie
Cooper, rh Yvette
Corbyn, Jeremy
Cousins, Jim
Cruddas, Jon
Cryer, Mrs. Ann
Curry, rh Mr. David
Darling, rh Mr. Alistair
David, Mr. Wayne
Davidson, Mr. Ian
Davies, Mr. Quentin
Dean, Mrs. Janet
Denham, rh Mr. John
Devine, Mr. Jim
Dhanda, Mr. Parmjit
Dismore, Mr. Andrew
Dobson, rh Frank
Donohoe, Mr. Brian H.
Doran, Mr. Frank
Dorrell, rh Mr. Stephen
Dowd, Jim
Eagle, Angela
Eagle, Maria
Efford, Clive
Ellman, Mrs. Louise
Ennis, Jeff
Featherstone, Lynne
Field, rh Mr. Frank
Fisher, Mark
Flint, rh Caroline
Flynn, Paul
Follett, Barbara
Foster, Mr. Don
Foster, Mr. Michael (Worcester)
Foster, Michael Jabez (Hastings and Rye)
Francis, Dr. Hywel
Gapes, Mike
Gauke, Mr. David
George, Andrew
Gerrard, Mr. Neil
Gibson, Dr. Ian
Gidley, Sandra
Gilroy, Linda
Godsiff, Mr. Roger
Goggins, Paul
Goldsworthy, Julia
Griffith, Nia
Grogan, Mr. John
Gwynne, Andrew
Hain, rh Mr. Peter
Hall, Mr. Mike
Hall, Patrick
Hamilton, Mr. Fabian
Hanson, rh Mr. David
Harman, rh Ms Harriet
Harris, Dr. Evan
Harvey, Nick
Hemming, John
Hendrick, Mr. Mark
Hepburn, Mr. Stephen
Hewitt, rh Ms Patricia
Heyes, David
Hill, rh Keith
Hodgson, Mrs. Sharon
Hoey, Kate
Holmes, Paul
Hope, Phil
Hopkins, Kelvin
Horwood, Martin
Howarth, David
Howarth, rh Mr. George
Howells, Dr. Kim
Hughes, rh Beverley
Huhne, Chris
Humble, Mrs. Joan
Hunter, Mark
Iddon, Dr. Brian
Illsley, Mr. Eric
Ingram, rh Mr. Adam
Irranca-Davies, Huw
Jackson, Glenda
James, Mrs. Siân C.
Jenkin, Mr. Bernard
Jenkins, Mr. Brian
Johnson, rh Alan
Johnson, Ms Diana R.
Jones, Helen
Jones, Mr. Kevan
Jones, Lynne
Jones, Mr. Martyn
Jowell, rh Tessa
Keeble, Ms Sally
Keen, Ann
Keetch, Mr. Paul
Kemp, Mr. Fraser
Kennedy, rh Jane
Key, Robert
Kidney, Mr. David
Knight, rh Mr. Greg
Knight, Jim
Kramer, Susan
Kumar, Dr. Ashok
Ladyman, Dr. Stephen
Laing, Mrs. Eleanor
Lait, Mrs. Jacqui
Lamb, Norman
Laws, Mr. David
Lazarowicz, Mark
Leech, Mr. John
Lepper, David
Letwin, rh Mr. Oliver
Levitt, Tom
Lewis, Mr. Ivan
Lewis, Dr. Julian
Linton, Martin
Lloyd, Tony
Llwyd, Mr. Elfyn
Love, Mr. Andrew
Lucas, Ian
Mackay, rh Mr. Andrew
Mactaggart, Fiona
Mahmood, Mr. Khalid
Malik, Mr. Shahid
Mallaber, Judy
Mann, John
Marris, Rob
Martlew, Mr. Eric
McCafferty, Chris
McCarthy, Kerry
McCarthy-Fry, Sarah
McDonnell, Dr. Alasdair
McDonnell, John
McFadden, Mr. Pat
McGuire, Mrs. Anne
McIntosh, Miss Anne
McIsaac, Shona
McKechin, Ann
McNulty, rh Mr. Tony
Meacher, rh Mr. Michael
Meale, Mr. Alan
Merron, Gillian
Milburn, rh Mr. Alan
Miliband, rh Edward
Miller, Andrew
Mitchell, Mr. Austin
Moffatt, Laura
Mole, Chris
Moon, Mrs. Madeleine
Moran, Margaret
Morden, Jessica
Morgan, Julie
Mountford, Kali
Mullin, Mr. Chris
Murphy, Mr. Jim
Murrison, Dr. Andrew
Naysmith, Dr. Doug
Norris, Dan
O'Brien, Mr. Mike
O'Hara, Mr. Edward
Oaten, Mr. Mark
Olner, Mr. Bill
Öpik, Lembit
Osborne, Mr. George
Osborne, Sandra
Paice, Mr. James
Palmer, Dr. Nick
Pearson, Ian
Plaskitt, Mr. James
Prentice, Mr. Gordon
Prescott, rh Mr. John
Primarolo, rh Dawn
Prosser, Gwyn
Purchase, Mr. Ken
Purnell, rh James
Rammell, Bill
Raynsford, rh Mr. Nick
Reed, Mr. Jamie
Reid, Mr. Alan
Rennie, Willie
Riordan, Mrs. Linda
Robertson, Angus
Robertson, John
Robinson, Mr. Geoffrey
Rogerson, Dan
Rooney, Mr. Terry
Ruddock, Joan
Russell, Bob
Salter, Martin
Seabeck, Alison
Shapps, Grant
Shaw, Jonathan
Sheerman, Mr. Barry
Sheridan, Jim
Simon, Mr. Siôn
Simpson, Alan
Skinner, Mr. Dennis
Slaughter, Mr. Andy
Smith, rh Mr. Andrew
Smith, Ms Angela C. (Sheffield, Hillsborough)
Smith, Angela E. (Basildon)
Smith, Sir Robert
Snelgrove, Anne
Soames, Mr. Nicholas
Soulsby, Sir Peter
Southworth, Helen
Spellar, rh Mr. John
Starkey, Dr. Phyllis
Steen, Mr. Anthony
Stoate, Dr. Howard
Strang, rh Dr. Gavin
Straw, rh Mr. Jack
Stringer, Graham
Stunell, Andrew
Swinson, Jo
Swire, Mr. Hugo
Tami, Mark
Taylor, Ms Dari
Taylor, Matthew
Taylor, Dr. Richard
Thomas, Mr. Gareth
Thornberry, Emily
Timms, rh Mr. Stephen
Tipping, Paddy
Trickett, Jon
Turner, Dr. Desmond
Tyrie, Mr. Andrew
Ussher, Kitty
Vara, Mr. Shailesh
Viggers, Peter
Villiers, Mrs. Theresa
Vis, Dr. Rudi
Wallace, Mr. Ben
Walley, Joan
Waltho, Lynda
Ward, Claire
Webb, Steve
Weir, Mr. Mike
Whitehead, Dr. Alan
Wicks, Malcolm
Williams, rh Mr. Alan
Williams, Mrs. Betty
Williams, Hywel
Williams, Stephen
Willott, Jenny
Wills, Mr. Michael
Wilson, Phil
Winnick, Mr. David
Winterton, rh Ms Rosie
Wishart, Pete
Woolas, Mr. Phil
Wright, Mr. Anthony
Wright, David
Wright, Mr. Iain
Wyatt, Derek
Yeo, Mr. Tim
Young, rh Sir George
Tellers for the Noes:
Mr. Alan Campbell and
Mr. Bob Blizzard
Question accordingly negatived.
| Next Section | Index | Home Page |