Licensing 'saviour siblings': Why the HFEA is right

Two recent BioNews Comments have considered the Human Fertilisation and Embryology Authority's (HFEA) review of the case-by-case approach to licensing  PGD for late-onset disorders and the use of pre-implantation tissue-typing (PITT) for the creation of 'saviour siblings'. This article considers further some of the reasons why the HFEA approach to case-by-case licensing of PITT is justified.

In his Comment in BioNews 541, Dr David King argues that the development of regulatory policy in this area should be guided by underlying social and ethical principles to avoid the re-emergence of public concern. His primary justification for continuing to take a case-by-case approach is that the child could potentially be treated as a means to an end. However, he recognises that PITT is ethically acceptable where the medical benefit to the sick child is likely to outweigh this concern. In the latter case, it follows that one child's existence depends on the extent of another child's suffering.

Regulatory policy emphasises the welfare of any child born following the provision of Assisted Reproductive Technology (ART). The aim of the Human Fertilisation and Embryology Act 1990 (as amended) is to ensure that any risk of harm to children born as a result of such technologies is assessed. It is also considered in the HFEA's Code of Practice, and has been emphasised elsewhere by the HFEA, such as the policy review of sex selection techniques in 2003 and the review of the welfare principle undertaken in 2005.

If welfare is a fundamental principle, the main factor when deciding whether PITT is permissible should be whether a child born following the procedure could suffer harm. This does not necessarily depend on the severity of the affected child's condition (or wider social factors).

The risk of the saviour sibling suffering physical harm due to donating blood or tissue is difficult to predict at the pre-conception stage. The donation procedure may occur a long time after the child is born or even never occur if a transplantation of cord blood stem cells is successful. However, the condition of the affected sibling could be used to assess whether a child created by PITT might be called upon to donate other tissues after birth.

Many commentators have paid particular attention to the risk of a saviour sibling suffering psychological harm once born. This risk was explicitly acknowledged by the HFEA Ethics Committee in 2001 when it considered the issue of PITT. Although the Committee noted that this risk remains speculative, there may be individual family circumstances that could potentially impact on the psychological development of a child born following PITT.

The HFEA Code of Practice addresses PITT specifically and sets rules for assessing a family's circumstances. A condition-by-condition approach to licensing may not necessarily take account of these differing circumstances and the complicated ethical concerns that apply. A case-by-case approach can therefore be seen as consistent with HFEA policy.