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Designer Babies - for Love or Science?
 

Photo: Katje Zanetta Borba

MIND MAGAZINE | Meet Jamie Whitaker. Born on June 16, 2003 by Caesarean Section at the Royal Hallamshire Hospital in Sheffield, England, Jamie is the world’s newest “designer baby.” And like his predecessors: Adam Nash from Colorado in 2000 and an anonymous British girl in 2002, young Jamie has come into the world with an armful of ethical baggage.

The media catch phrase “designer baby” is somewhat misleading since none of these children were actually designed. Rather, they were selected because of their design. An embryo’s design is revealed through a procedure known as Genetic Preimplantation Diagnosis; where DNA is extracted from the embryo and genetic traits such as eye color, sex and the presence of a genetic disease are revealed. Normally, this allows the parents to select the healthiest embryo for implantation into the mother’s uterus. But the uniqueness of these so-called designer babies is that the DNA test reveals another vital piece of genetic information: whether the embryo will become an ideal donor for an already ailing sibling. In the case of Jamie, this sibling is his four-year old brother Charlie.

Charlie suffers from a rare blood disorder, Diamond Blackfan Anaemia, which only affects about 700 people in the whole world. The disorder occurs when a person’s bone marrow fails to produce enough red blood cells, which needed to carry oxygen to the rest of the body. It is treatable, but Charlie’s quality and length of life are both in jeopardy. Fortunately, Charlie’s condition is curable with a stem cell transfusion from an identical tissue match. And this is where Jamie comes in. After a genetic preimplantation diagnosis, the Jamie we know, was selected at the embryonic stage so, once born, he could give Charlie the stem cells he needs.
 

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Families in Britain who wish to create designer babies must apply to the British Human Fertilisation and Embryonic Authority (HEFA). Under British law, only hereditary conditions are permissible and since Charlie’s condition is non-hereditary, the Whitaker’s application was rejected. Nonetheless, the family flew to the infamous Reproductive Genetics Institute in Chicago where the previous two procedures were performed. U.S. laws are less stringent upon the distinction between hereditary and non-hereditary diseases.

The scientific community has applauded the birth of Jamie and his two predecessors, dubbing each a “saviour sibling” for the humanitarian feats they are expected to perform. But the scientific achievement known as “Jamie Whitaker” also poses serious moral and legal questions.

The problem is that designer babies are created, selected, and then born…as a resource. Out of the dozens of embryos that Jamie’s parents, Jayson and Michelle Whitaker, could have selected for implantation, they selected Jamie since he was the same tissue type as Charlie. But regardless of how or why he was conceived, Jamie was born into this world with all the rights being a human entails. Legally and morally, humans cannot be a resource. Fundamental to all domestic and international human rights covenants is the absolute and inalienable right to be treated with dignity—as an ‘end-in-themselves’ rather than a ‘means-to-an-end.’

This should be particularly concerning to Canadians since Canada is struggling to ratify a law governing New Reproductive Technologies. Bill C-13, entitled An Act Respecting Assisted Human Reproduction, is currently set aside until Parliament reconvenes on Sept.15. However, even in its third and final reading, MP’s are still very much divided on the legislation, most notably on the issue of embryonic research.

Although deserving, it is unfortunate that so much attention is being given to embryonic research while equally distressing issues such as the creation of designer babies has fallen through the cracks. Bill C-13 already prevents the discrimination of embryos based on sex. So the notion that embryos can have certain human rights is not entirely foreign. But the language governing the potential for designer babies is not encouraging. Under section 10, parts 1 and 2 of Bill C-13; the alteration, manipulation, treatment or usage of human reproductive material or In Vetro embryos is not prohibited but rather is to be controlled under the yet to be determined mandate of a regulatory body. Similar to Britain’s Human Fertilization and Embryology Act of 1990, the language of section 10 offers little hope to those opposed to designer babies. Clearly, Canada needs to take a moral stand against New Reproductive Technologies rather than trying to keep up with the Joneses. If Bill C-13 passes its final reading it will be sent to the Senate for ratification. After that, its anybody’s guess what the Senate will do.

And as the saying goes— science and technology waits for no one. On April 8, 2003, Raj and Shahana Hashmi of Britain had a High Court decision rejecting their application overturned by Britain’s Court of Appeal. The Hashmi’s son, four-year old Zain, suffers from a rare hereditary blood disease known as Thalassaemia and needs a donor with the same tissue type. Despite the efforts of the “pro life” group CORE (Comment of Reproductive Ethics), who initiated the legal action, the court’s ruling now paves the way for the world’s fourth designer baby.

The Shahana case emphasizes why the similarity between British law and Bill C-13 is so troubling. The approval of designer babies in British law is based on the distinction between hereditary and non-hereditary disorders. But this is a scientific distinction, not a moral one. The only difference between hereditary and non-hereditary disorders is that the number of embryos required to find a genetic match is much greater with non-hereditary disorders. The approval is based on numbers, not morals. Since Bill C-13 will determine the shape of Canadian society for generations to come, let’s hope that policy makers can appeal to both morals and science.

And what about Jamie Whitaker? Well, designer babies like Jamie face a lifetime of unprecedented existential questions. Unlike other children, including other In Vitro Fertilization children, Jamie was born with both intrinsic and instrumental value. His parents argue that they wanted both a child and a donor. But which takes precedent? And herein lies the dilemma. Jamie can never really be sure why he was brought into this world. Was it for love, or for science?


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