What is the law in the UK on ‘saviour siblings’?

Pre-implantation tissue typing uses the same technique as PGD on the same embryo, but involves testing for the embryo’s tissue type to allow the selection of embryos which are a tissue match the existing sibling who is in need of a tissue transplant. Laws govern the use of these techniques.

The Human Fertilisation and Embryology Act 2008 updated the original 1990 Act of the same name. It makes considerable changes to the law on assisted reproductive technology as well as embryo research in an attempt to keep up with technological, medical, and social change.

Whilst the previous Act did not specifically allow IVF techniques to be used to create ‘saviour siblings’, the courts had developed the law on a case-by-case basis such that PGD and tissue typing could be used in conjunction where it would save the life of a sibling. In other cases, however, the courts had refused to allow tissue-typing on its own; tissue typing could only take place when PGD was already required to select embryos that were not affected by a genetic disorder.

The 2008 Act has clarified the position on this point. The law now requires that the intended recipient of any donated tissue from a child born following tissue typing must:

(a) be a sibling of any child born as a result of treatment, and
(b) suffer from a serious medical condition that could be treated by umbilical cord blood stem cells, bone marrow or other tissue (excluding whole organs) of any resulting child.

One significant consequence of these provisions is that ‘saviour sibling’ selection specifically for the purposes of (eventual) whole organ transplantation is prohibited. However, the law does permit tissue typing even where the embryo will not additionally be tested for a particular genetic abnormality.

The HFEA now has the power to decide whether to permit the creation of saviour siblings to treat children with conditions that are serious and debilitating but not necessarily life threatening (which was required under the previous rules). The HFEA licenses pre-implantation tissue typing on a ‘case-by-case’ basis.

Each time a clinic wishes to carry out this procedure, it must apply for a special licence from the HFEA which will be considered by an HFEA committee in accordance with the law and the guidance provided by the HFEA Code of Practice. If, for some reason, the sick sibling needs further treatment, perhaps through a bone marrow transplant, the decision about whether or not to proceed would be made either by the Human Tissue Authority or by a court.

For further legal advice on saviour siblings and the complex law surrounding them, you can contact a specialist family lawyer. A family lawyer can assess your situation and determine if it is likely that a clinic will be granted a licence by HFEA. In addition, a family lawyer can assist you if you run into any problems.

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