Human Fertilisation and Embryology Bill: Embryo testing and ‘saviour siblings’
Committee stage, House of Commons, May 2008
The Human Fertilisation and Embryology Bill creates, for the first time, a clear statutory framework within which embryo testing can be provided by clinics. Schedule 2, paragraph 3 (page 55) sets out the cases in which embryo testing can be carried out in treatment. They are:
- Preimplantation genetic screening: sometimes known as aneuploidy screening, this technique is of benefit to women at high risk of a failed IVF cycle or an early miscarriage. It screens for chromosomal abnormalities, enabling these women to increase their chance of a establishing and maintaining a pregnancy.
- Preimplantation genetic diagnosis: this enables couples who know they are at significant risk of having a child with a particular genetic condition to avoid the transfer of embryos affected by the condition.
- Preimplantation sex selection for medical reasons: this enables couples who know they are at significant risk of having a child with a genetic condition affecting one sex to avoid the transfer of embryos of that sex.
- Preimplantation tissue typing: sometimes referred to as ‘saviour sibling’ treatment, this use of embryo testing allows the selection of an embryo which is a tissue match with a sibling suffering from a life-threatening or serious medical condition. In most cases, stem cells from the umbilical cord can be used to treat the sibling.
- Preimplantation paternity/maternity testing: this is to determine, in cases where a laboratory mistake may have been made, whose sperm and egg have been used to create a particular embryo.
Preimplantation tissue typing (‘saviour siblings’)
Page 55, line 30: The BMA supports the use of preimplantation tissue typing where the sibling’s condition is life threatening or serious.
A key concern about such cases has been the possibility of psychological harm resulting to the child who would be selected and born to be a donor. Although likely to be as loved as any other child, concerns have been expressed that the child might resent being “selected”, feel less wanted or less respected as an individual. The BMA believes that these hypothetical risks of harm needed to be balanced against other harms, primarily the real harm to the sibling who would suffer or die without this treatment. It has been argued that if selection by tissue typing were permitted, children would be born as a means to someone else’s ends rather than for their own sake. In reality, however, parents have children for many reasons often more to do with their own wishes and desires than the interests of the future child. Despite these complex, and sometimes apparently selfish motives, most children are loved for themselves.
Normally, stem cells from the baby’s umbilical cord blood can be used to treat the sick sibling. Some Parliamentarians may be concerned that the bone marrow and other tissue from the child born as a result of preimplantation tissue typing could also be used. The BMA believes that such sources of tissue are potentially legitimate and that safeguards to protect children are already in place. Donations of bone marrow and peripheral blood stem cells from children who lack competence to give consent (in Scotland, all children) must be assessed by an Accredited Assessor and submitted to the Human Tissue Authority for approval. This process protects these potentially vulnerable donors by introducing an independent element into the decision-making process.
Preimplantation genetic diagnosis
Page 55, line 17: Preimplantation genetic diagnosis (PGD) was in its infancy when the 1990 HFEA Act started its passage through Parliament. As a result, provision for this procedure is very limited in the current legislation. The BMA is pleased to see the provision expanded as this will give clarity to the HFEA and to centres offering embryo testing.
Page 55, line 42: The Bill specifies that PGD can only be offered in cases where there is ‘significant risk that a person with the abnormality will have or develop a serious physical or mental disability, a serious illness or any other serious medical condition’. The BMA supports this provision and is pleased that the wording is broad enough to include conditions which are not necessarily present at birth (late onset conditions) and those where there is a high chance, though not a certainty, that the condition will appear (non-fully penetrant conditions).
The Bill reflects the approach that the HFEA has taken in regulating PGD in the absence of a clear framework in the current legislation. PGD is carried out to avoid serious genetic diseases in a small number of cases each year and has not been used for trivial purposes, as some Parliamentarians during the passage of the original Bill in 1989 feared would happen. It remains a treatment of last resort for couples who feel that they have run out of alternative options for having a healthy child. The experience of licensing PGD over the past 17 years shows that clinics and their patients have a responsible attitude to the use of this technique.
Sex selection for social reasons
Page 56, line 15: The BMA’s view is that the use of technology to select embryos should primarily be for the purpose of reducing suffering and impairment. Its use for trivial or social reasons or as a means to satisfy parental desires for certain physical or enhancing characteristics in healthy children is inappropriate. The BMA believes that sex selection, whether carried out in preference of a particular sex or in order to balance the number of boys and girls in a family, should not be permitted. The technology should instead be reserved for medical reasons only.
For further information, please contact:
Email: parliamentaryunit@bma.org.uk