July 21, 2004

scientists react to HFEA decision on ‘Saviour Siblings’

These comments follow the HFEA’s announcement that they are to relax the rules on embryo selection to allow couples to select an embryo who might be a tissue match for a seriously ill sibling.

Shahana Hashmi, who was three years ago given permission to create a donor sibling for her son Zain, said:

“This a wonderful announcement, we are in the 21st Century so lets embrace scientific progress to alleviate suffering and illness. People like us who are desperately seeking to take away the pain of their loved ones have now got an option to explore all possible avenues. We have met people and know of people who are in the terribly difficult situation we are in, and are delighted that they will have the opportunity to use this technology. Far from being made for spare parts these babies will be loved even more.”

Simon Fishel, Managing Director of Centres for Assisted Reproduction, said:

“I have no doubt that this is the right decision. The previous stance of not allowing the selection of an embryo for tissue typing in our society was ethically unjustified. In the real world these families are often faced with trying to conceive a tissue-matched child through natural conception and this can result in numerous heart breaking terminations of pregnancy, the birth of children not tissue matched or further children with a life threatening disease. Parents have the right to choose technology to help them overcome their extraordinarly painful circumstances. Providing those of us involved in this technology are assured, as best we can, of the welfare of the unborn child then we ought not to deny parents the opportunity to make their own moral choice. My hope is that a successful pregnancy is now achieved quickly and Joshua is able to be cured of his devastating disorder.”

Professor Alison Murdoch, Chair of the British Fertility Society, said:

“The often-used term ‘designer baby’ is misleading here – we are not talking about engineering a child to have a certain hair colour or aesthetic characteristic. This is about families being able to make a decision that their new baby could save the life of its older brother or sister.’

“These are difficult, distressing and complex real life situations and the regulator does not take these policy decisions lightly. Additionally the families and clinic staff involved discuss every consequence of the procedures and their outcomes. This is the hardest decision some families ever have to make.”

A spokesperson for the British Medical Association, said:

“The BMA believes that preimplantation genetic diagnosis (PGD) should be permitted to select embryos that are most likely to provide a suitable tissue match for an existing child in the family who is dying or seriously ill, so that stem cells from the umbilical cord could be used to treat that sibling.”

Alistair Kent, Director of the Genetic Interest Group, said:

“We are delighted with the decision by the HFEA to allow this treatment to proceed. If it works it will represent a triumph of technology applied in a humane and sensible manner to save a life and also to bring hope to many others who may find themselves in a similar situation.”

Juliet Tizzard, Director of Progress Educational Trust, said:

“The HFEA seems to have been persuaded by the sensible view that those requesting PGD and tissue typing for non-inherited conditions are responsible parents acting in the best interests of their existing and future children.

“However, there is nothing to suggest that there is widespread demand for this treatment. Instead, the availability of PGD and tissue typing will be a valuable option for the unlucky few who no longer feel able to leave baby-making to chance.

“Pro-life campaigners, who have tried to ban PGD and tissue typing through the courts, have achieved nothing more than anxiety and delay for parents with a sick child. We are delighted that such campaigners have failed to prevent the HFEA from sanctioning a treatment which can bring great benefit to parents and their existing and future children.”

Dr Andy Miah, Bioethicist at University of Paisley, Scotland, said:

“Let us remember what is happening here: We are questioning the justification for a couple’s desire to have a child and, uniquely, we are in a position to limit that choice. This demands that our ruling is compassionate to those who most need it, specifically, the Fletcher family. In order to appreciate the weight of such a matter, imagine if we were to ask this of all families. What are good reasons for having children, if not something like this?

“People often talk about a ‘slippery slope’ when discussing decisions like these. This is not a persuasive argument. Values change. Morality changes. These rulings reflect the changing role of reproductive technology in our lives. Reducing the restrictions on this matter is essential and is consistent with how we generally use medical technology.

“It is essential that we do not just rely on principles with matters like these. Where reproductive technologies can enhance peoples lives, it would be wrong to prohibit them.

“Imagine that the main reason for you having been created was so that you could give life to another human being. What greater honour could there be?”

Dr Mohammed Taranissi, Medical Director, Assisted Reproduction And Gynaecology Centre, said:

“This is obviously good news. However, this announcement shouldn’t be seen as the rules being relaxed, but rather being brought into line with the previous decisions. This is far from slippery slope and “designer baby”. What we are doing is simply helping treat sick children.”

John Harris, Sir David Alliance Professor of Bioethics at the University of Manchester, said:

“There could be no better reason for having a child than to save the life of another child. This is therefore a genuinely ‘pro life’ decision by the parents and the HFEA and they are to be congratulated.”

Lord Robert Winston, Professor Of Fertility Studies, Imperial College, said:

“Of course we all have concerns about “designer” babies but various societies have been doing something similar since Sparta – 2000 years ago. There seems little problem for our society as a whole if a few families at risk decide to conceive a baby of a particular tissue-type. Of course we should ensure, where possible, that such children are not seen as ‘commodities’ and are not exploited – but this exploitation could happen after natural conception in these families too.

“I am unconvinced that the HFEA is the organisation to police all this – it has taken a curious stance on preimplantation diagnosis, requiring every serious mutation to be separately licensed. This is bizarre as throughout most of Europe it is possible to get a pregnancy terminated for a wide range of unspecified serious genetic defects. Families undergoing preimplantation diagnosis are doing something much more positive – they are starting a pregnancy knowing that this baby is free of the very defect from which they have seen another child of theirs suffer grievously. They are invariably trying to avoid abortion.”