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Human Fertilisation and Embryology Bill [HL]

moved Amendment No. 76: 76: Schedule 3, page 64, line 46, at end insert— ““12A After paragraph 12 (as inserted by paragraph 12 above) insert— ““Consent in relation to children for storage and use for research 12A (1) The human cells of a person (““the child””) may be used to bring about the creation of an embryo or inter-species embryo in vitro, and any embryo or inter-species embryo so created, used or stored for the purposes of any project of research without the child’s consent if the following conditions are met. (2) Condition A is that the human cells are lawfully taken from or provided by the child before the child attains the age of 18 years. (3) Condition B is that, at the time when the human cells are first used, the child is not competent to deal with the issue of consent in relation to either the storage or use of the human cells, embryos or inter-species embryos. (4) Condition C is that the child does not appear to the person storing or using the human cells, embryos or inter-species embryos to have indicated any objection to such storage or use. (5) Condition D is that a person who has parental responsibility for the child has given their consent in writing and signed it. (6) Condition E is that there are reasonable grounds for believing that research of comparable effectiveness cannot be carried out if the project of research for which the human cells, embryos or inter-species embryos are stored or used has to be confined to, or relate only to, persons who have capacity to consent to it. (7) In relation to Scotland, in sub-paragraph (2), for ““18”” substitute ““16””. The noble Lord said: The amendment is to allow somatic cells from children to be used in embryonic stem cell research. This does not relate to the retrospective collection of tissues, cells or cell lines. Schedule 3 makes no provision for parents to consent to material from a child to be used for research. Having listened carefully to the debate in Committee, the amendment that I now propose is more limited in scope, but will still address the major concern that children with severe, life-limiting disorders should not be excluded from the potential benefits of stem cell research. The amendment allows for only somatic cells to be use—not gametes. It is a requirement that the tissue has already been lawfully obtained. This would be for treatment or research purposes, in accordance with common law and consent and statutory requirements, such as the Human Tissue Act. The amendment will allow cells to be used in exceptional situations, where there is no possibility of obtaining material from a competent adult because all the sufferers will inevitably die before reaching that age—for example, in the case of serious, innate, immune deficiency disorders and severe muscular dystrophy. The aim of techniques such as SCNT—somatic cell nuclear transfer—is to develop cell lines that carry genetic abnormalities that cause these types of disease. To develop these disease models, scientists need to be able to take somatic cells—adult cells—through an embryo phase in order to generate embryonic stem cells, which in turn would allow the disease model to be studied. These lives may then be studied further, to understand how the effects of such devastating diseases occur at a cellular level, and how potential gene or drug therapies might be developed. Research involving children must never be undertaken lightly and there is no intention in this amendment to do so. In addition to the other safeguards, the amendment contains provisions to ensure that consent is appropriately obtained from the person responsible for the child. All research would be reviewed by the relevant regulator and research ethics committee. The amendment is purely about being able to learn more about the serious diseases that some of these children suffer from. Most of them die within the first two to three years of their life. I do not want to rehearse again what I said in Committee about the diseases in detail—diseases such as Alport syndrome, Batten disease and lissencephaly, all of which affect brain development. The purpose would be to study, at an early phase, the progression of these diseases. Why do these children end up with their brains so poorly developed as a result of serious diseases, as opposed to their stem cells developing normally into neuronal cells? Somatic cell nuclear technologies can be used to generate embryonic stem cells that are customised to specific patients, such as children with leukaemia, immune deficiency, and sickle cell anaemia. Using these cells, researchers hope to be able to correct the genetic defects in patient-specific cells, direct their differentiation into blood, and, ultimately, identify future clinical treatments. The amendment is limited to having the consent of the parents and using the somatic cells of the children. I beg to move.