Reproductive Opportunities and Regulatory Challenges

Abstract

BACKGROUND The plight of the Hashmi family has attracted widespread interest in the media. Briefly, one of the Hashmis' children, Zain, was born with the blood disorder, beta thalassaemia major. To rectify this disorder, Zain needs a stem cell transplantation, using the cord blood or bone marrow of a donor who is free of the thalassaemia gene as well as being a tissue-match with Zain. None of Zain's three elder siblings being a tissue-match, the Hashmis resolved to have another child (an intended saviour sibling). The first child conceived by Mrs Hashmi was aborted because prenatal tests showed that it had the thalassaemia gene; and the second, although born healthy, was not a tissue-match for Zain. In desperation, the Hashmis sought advice from Dr Simon Fishel, the Managing and Scientific Director of Centres for Assisted Reproduction Limited (CARE), the largest single provider of IVF services in the United Kingdom. Dr Fishel advised the Hashmis that a procedure pioneered at the Reproductive Genetics Institute in Chicago might assist them. This procedure involved removing a single cell from the early embryo by a biopsy; using pre-implantation genetic diagnosis (PGD) to check that the embryo was free of the thalassaemia gene; using a similar process, HLA typing, to confirm a tissue-match; and then implanting an embryo that satisfied both requirements. However, Dr Fishel's view was that, before such a procedure could be lawfully undertaken in the UK, it would need to be specifically authorised by the Human Fertilisation and Embryology Authority (the Authority). For, although there was nothing new about PGD being carried out as part of IVF treatment licensed by the Authority,1