DOCTORS have been cleared to perform invasive bonemarrow harvests on “designer babies” who have been conceived as matching donors for sick siblings, The Times has learnt.

A strict ban on taking bone marrow from children born as “saviour siblings” has been lifted by the Human Fertilisation and Embryology Authority (HFEA), documents obtained under freedom of information legislation have revealed.

The rule change, which took place last year but was not publicised, has stirred fresh controversy over the ethics of selecting embryos with tissue that matches seriously ill children.

Previous regulations permitted only umbilical cord blood to be taken from babies born in this way, because bone marrow extraction requires invasive, painful and potentially hazardous surgery under general anaesthetic.

Infants can now be screened as embryos purely for their suitability to donate tissue, and then exposed to a risky operation from which they themselves will derive no medical benefit.

The new policy has emerged as the House of Lords begins hearing a legal challenge today to the HFEA’s decision to approve the creation of saviour siblings, and threatens to undermine a key element of the fertility watchdog’s case.

Its lawyers have argued in a pretrial submission that such screening involves “no adverse effect for the baby — indeed no invasive procedure relating to the baby”, because only cord blood is used. This is not true when bone marrow is involved.

Josephine Quintavalle, of Comment on Reproductive Ethics, the pro-life group that has brought today’s case, said that the HFEA had “moved ethical goalposts” without consulting or even informing the public. “We were categorically promised during all legal hearings that tissue-typing would result only in non- invasive applications, dependent exclusively on harvesting stem cells from the designed baby’s umbilical cord blood,” Ms Quintavalle said.

“The HFEA resisted with self-righteous indignation any accusations that saviour siblings were being set up as future bone marrow donors.

“Now the HFEA has completely changed its mind by suggesting that bone-marrow donation is OK after all. Bone-marrow donation is invasive and can be painful and never more so than for a tiny newborn baby, who derives no benefit from the procedure and is unable to give consent.

“The concept that a baby should be created with this specific purpose in mind goes beyond the comprehension of compassionate and civilised citizens.”

The authority ought to have done much more to make its decision public, she added. “The ethical decisions of the HFEA should be blazoned across every newspaper in the country, instead of being cunningly buried in committee meetings.”

The HFEA has allowed screening for tissue type since 2001, but only when parents were already testing embryos for a genetic disease and planned to use cord blood to treat the child in need of a transplant.

Both these constraints were eased last July, and clinics were informed in a letter circulated in August. Only the decision to approve tissue typing on its own, however, was publicised.

The authority agreed to approve bone-marrow transplants after the UK Children’s Cancer Study Group presented evidence that these were generally more successful than cord blood treatments, particularly for a thalassaemia, an inherited blood disorder.

Bone marrow is also needed when patients are older and bigger, because of the greater volumes of tissue required, and can be used if a previous cord blood transplant has failed.

The HFEA ethics and law committee ruled that bonemarrow donation was now a “relatively routine treatment strategy” provided that the donor was over a year old, though it noted that the Department of Health regards it as “not a minimal intervention” carrying “significant risks”.

It decided that once a child had been born, its best interests could be served by donating bone marrow to a sibling who might otherwise die, and that the ban was no longer justified.

The new guidelines state: “Subject to appropriate safeguards, pre-implantation tissue typing may be permitted in cases in which bone marrow, instead of or as well as cord blood, would be required for the treatment of the affected sibling.”

A spokesman for the authority said: “We have made this decision to make sure the interests of the child born are properly protected. Consideration of bone marrow shows we are aware this is a possible consequence.”

Ms Quintavalle said: “They try to justify themselves by claiming that bone-marrow donation is not an invasive procedure anyway, but their own documents show this is not the case.”

SAVIOUR SIBLINGS: THE TECHNIQUE

IVF embryos are grown to the eight-cell stage, and one cell is removed for genetic testing

The test determines whether the embryo shares tissue type with the child who needs a transplant

Only embryos that match are transferred to the womb, ensuring that the baby born is a suitable donor

At birth, blood from the umbilical cord is collected and can then be used for a stem transplant

Bone marrow is another option, although this cannot be taken until the child is a year old

Bone marrow is usually harvested from the pelvis with a special needle. It involves a general anaesthetic, and carries a small risk of infection

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