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'Savior Siblings,' Made to Order

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British Approval of Designer Babies Stirs Ethical Anxiety

LONDON, MAY 8, 2005 (Zenit) - The final legal obstacle to designer babies in Britain was removed last week in a ruling by the House of Lords, the Telegraph newspaper reported April 29. The case involved Raj and Shahana Hashimi, who sought to use pre-implantation genetic diagnosis (PGD) to create a child whose umbilical cord stem cells could provide a cure for their son Zain. The boy has a blood disorder and must receive frequent transfusions.

The case has a complicated legal history and the latest decision follows a legal appeal in 2003, won by the Hashimi family. This decision was challenged by Josephine Quintavalle, the director of a pro-life group, Comment on Reproductive Ethics. But in a unanimous ruling the five law lords decreed that using PGD to create what is also referred to as a "savior sibling" is permissible.

A press release by Josephine Quintavalle dated April 28 commented that the decision by the House of Lords set a dangerous precedent. "The Law Lords have in effect stated that unless there are specific prohibitions to the contrary, the Human Fertilization and Embryology Authority can do whatever it pleases," she stated.

The problem with this, she continued, is that it is not just about creating babies in a laboratory for matching tissues. Worse, it leaves the door open to designer babies in general. "Whatever the mother deems to be suitable in an embryo is what she can ask for, according to today's interpretation of the law," concluded Quintavalle.

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The previous legal victory by the Hashimi family had in fact already opened the doors in Britain for designer babies. The Telegraph in a report last Nov. 25 announced that the country's National Health Service will now pay for couples to create babies that are needed to provide cells for their siblings.

The newspaper reported that in the preceding months at least three local health authorities in England had agreed to provide public funds for couples who wanted to create a donor sibling. According to the article, four attempts at in vitro fertilization, together with PGD, costs around 20,000 pounds ($37,800).

Then, on Nov. 29, the Times reported that a couple was the first to conceive the United Kingdom's first designer baby. Julie and Joe Fletcher's son is anemic and after IVF an embryo was selected whose umbilical cord will provide a source of stem cells.

They are the first couple to so conceive because the Hashimi family, though given the go-ahead, had so far been unsuccessful at achieving a pregnancy, the Times said. Other British couples have given birth to savior siblings, but after treatment in the United States, where the procedure is legal.

Moving the goal posts

A further relaxation of the rules governing savior siblings was reported March 7 by the Times. Britain's Human Fertilization and Embryology Authority (HFEA) has authorized doctors to perform surgery on designer babies to extract bone marrow.

Previously it was only possible for blood and cells from the umbilical cord to be used. But the newspaper affirmed that the rules were relaxed last year, without any publicity. The change only came to light through documents released under freedom-of-information legislation.

Commenting to the Times on the rule change, Josephine Quintavalle said that the HFEA had "moved ethical goal posts" without consulting or even informing the public. She added: "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 civilized citizens."

Screening for cancer

Fears over the use of PGD were confirmed in another ruling by the HFEA late last year. BBC reported Nov. 1 that the HFEA has approved screening for embryos in order to eliminate those that suffer from an inherited form of cancer.

Researchers from University College in London were given a license to screen for a form of genetic bowel cancer. A parent who carries the gene involved in this cancer, reportedly has a 50% chance of passing it on to his or her children. Those who possess this gene can develop rectal or colon cancer in teen-age years.

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The technique is already used in screening for other disorders such as cystic fibrosis, which can affect babies from the time of birth, BBC reported. However, this is thought to be the first time it has been used for a disease that does not affect the sufferer until early adulthood.

Commenting on the decision, Dr. Mohammed Tarannisi, director of the Assisted Reproduction and Gynecology Center in London, told BBC the latest decision should have been "put to a wider audience." On BBC Radio 4's Today program he said: "These are conditions that may or may not develop 20, 30, 40 years down the line. Is this the right thing to do? It is not up to the HFEA or three members of the HFEA or even a clinician like myself to make these kinds of decisions. This is an issue that needs to be debated properly."

The HFEA decision was criticized by other groups as well, noted the Guardian newspaper on Nov. 2. "Whether or not genetic selection of embryos should take place, or in which cases, is extremely difficult to decide about," said Sue Mayer, director of the organization GeneWatch UK. "The HFEA have taken it upon themselves to make these decisions without reference to anyone but themselves."

Further criticism came from Dr. Callum MacKellar, director of research at the Scottish Council on Human Bioethics. According to a report in the Scotsman newspaper the same day, MacKellar warned that the move could "lead society on to a slippery slope towards eugenics."

Psychological risks

A recent article by Agneto Sutton, lecturer in the Department of Theology at University College, Chichester, England, commented on the ethics involved in savior siblings. Published in last year's No. 6 edition of the Italian bioethics magazine Medicina e Morale, the article observed that while the aim of saving a sick child is praiseworthy in itself, "it cannot justify any means to achieve it."

Sutton argued that the HFEA has not provided sufficient evidence that the process of PGD itself will not have ill effects for the children born following such tests. Moreover, she asked how a savior sibling will react on learning that it was born for the sake of helping an older child. "Is this compatible with the human dignity of the child?" she asked. This situation could lead to psychological suffering for the savior sibling.

On the part of the parents the decision in favor of a savior sibling also reveals problems, Sutton added. The child is used as something instrumental and its welcome is far from being unconditional. Even the label "savior" is a misnomer, she argued. When we speak of a savior we refer to someone who has made an active intervention, willed by the person who acts. In the case of babies who are selected as a source of cells, the "savior" is passive and is treated as a product.

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The Catechism of the Catholic Church, in No. 2378, in dealing with the theme of IVF in general, warns that "A child is not something owed to one, but is a gift." The text adds: "A child may not be considered a piece of property." A warning that remains valid as genetic techniques extend their reach.