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Human Fertilisation and Embryology Bill [HL]

Embryo testing involves removing one or two cells of an embryo created in vitro at the eight-cell stage. The Bill introduces five principal purposes for which embryos can be tested. These are: to determine whether the embryo has a genetic, normally chromosomal, abnormality that would affect its ability to result in a pregnancy; to determine whether the embryo has inherited a gene or genes from one or both parents that will mean that any resulting child will have or develop a serious medical condition—this is preimplantation genetic diagnosis, and is what the amendments tabled by the noble Baroness relate to—to determine the sex of the embryo where there is a particular risk that any resulting child will have or develop a gender-related serious medical condition; to determine the tissue type of the embryo where there is an older sibling with a serious medical condition that could be treated with umbilical cord blood, bone marrow or other tissue of the resulting child; and finally, in the event that there is uncertainty as to whose gametes were used to create the embryo. The purpose to which the amendments in this group relate is in new paragraph 1ZA(1)(b). This allows embryo testing where there is an inherited condition in one or both parents that could be passed on to any resulting child. A further provision relates to this. New paragraph 1ZA(2) specifies the criteria that must be met in relation to the risk of the condition for which the embryo is being tested—for example, that it must be a significant risk that a person with the abnormality would have or develop a serious condition, disability or illness. The Bill is drafted to describe the genetic alteration that would result in the medical condition as an ““abnormality””. Amendments Nos. 29 to 31 and 36 to 38 change ““abnormality”” to ““characteristic”” every time it is mentioned. The effect would primarily be a drafting alteration. The same tests would have to be met, regardless of how the trait that causes any given condition is described. ““Characteristic””, in the description of the purpose, would not necessarily indicate that there would be something medically wrong with anyone born with such a characteristic. It could be argued that ““abnormality”” might indicate that. However, new paragraph 1ZA(2) ensures that however the trait is described, embryo testing could be carried out only where the trait gives rise to a significant risk of a person having or developing a serious medical condition. We appreciate that there may be concerns about the use of ““abnormality”” in this context—although I note also the concerns of other noble Lords in relation to ““characteristic””. There are many different variations of genes and we all have slightly different versions. Some changes will have very little effect, whereas others will result in a serious medical condition. Because of the variation, it could be said to be difficult to say that there is one version of a gene and that this is normal. However, from a drafting point of view, ““abnormality”” was intended to be interpreted as being a change in the gene chromosome or mitochondria that would result in any particular medical condition being present. The word proposed by the noble Baroness would not have the same issue associated with it as ““abnormality””. It also still ensures that embryo testing for the purpose specified in new paragraph 1ZA(1)(b) could be carried out only where there was a significant risk that the genetic alteration—or characteristic—would result in a serious medical condition being present or developing in any child born as a result of treatment. Therefore, we will agree to consider further the amendments tabled. Amendment No. 38A also relates to embryo testing where the embryo is at particular risk of inheriting a condition that could result in a medical condition—perhaps when the parents both have a faulty copy of the cystic fibrosis gene. The amendment relates to new paragraph 1ZA(1)(b) of Schedule 2 to the 1990 Act, and new paragraph 1ZA(2) specifies the criteria that must be met in relation to the risk of the condition for which the embryo is being tested—that there must be a significant risk of the child that results having or developing a serious condition, disability or illness. The amendment inserts ““may”” into this paragraph. Some conditions that it might be desirable to test for are not fully penetrant. This means that if you inherit the abnormality or characteristic, you will not always develop the condition. Instead, you inherit an increased susceptibility to the condition. This is the case for some types of cancers that can be inherited—for example, some forms of breast and bowel cancer. The Bill would allow for conditions that are not fully penetrant to be tested for, subject to licence by the HFEA. To paraphrase, the Bill states that the inheritable abnormality must result in a significant risk that the condition which it causes is present or developing in the person born as a result of testing. Therefore, if the particular abnormality resulted in a serious condition in nine out of 10 people with that condition, this could be considered a significant risk. Amendment No. 38A would not necessarily open the scope for the authority to license more conditions, as there would still have to be a significant risk that the condition may develop. The amendment could add a level of uncertainty which would not be desirable. The noble Lord, Lord Alton, asked whether ““characteristic”” would include sporting ability. The answer is no—a characteristic would still need to satisfy the criteria leading to a serious medical condition. The noble Baroness, Lady Tonge, asked whether testing for apoprotein would be allowed. We note the comments on conditions caused by apoprotein and will look at this further in the context of the Bill. I note the views expressed from all sides in this debate, specifically in relation to characteristics, and I am very glad that the amendment has brought together so many parts of the Committee. In view of that, I hope that the noble Baroness will feel able to withdraw the amendment—