I-17: The Ethics of Using IVF and PGD to Conceive A Savior Child

Until the advent of preimplantation genetic diagnosis (PGD) in the 90’s of the last century, the only efficient means to find out whether an offspring has inherited a genetic disease from a couple who are carriers of the defective gene is through prenatal diagnosis (PND). However, if the fetus is found to have the genetic disease, presently the only available treatment is to abort the fetus, and this is not always acceptable to many people for a variety of religious and cultural reasons. PGD was originally developed as an alternative to PND in order to select genetically disease-free embryos in vitro before their transfer to the woman’s womb, and in the past decade, it has widely used for couples at risk of monogenic diseases such as cystic fibrosis, thalassemias, X-linked diseases such as Duchenne muscular dystrophy and chromosomal structural abnormalities such as translocations and aneuploidies. Recently, PGD has been used in combination with human leukocyte antigens typing (HLA-typing) to select embryos that are not only disease-free but also tissue-matched to be compatible with an existing child. Since the child is capable of donating its cord blood for stem cell transplantation to save an afflicted sibling’s life, it is dubbed a “Saviour Child”. The first PGD/HLA-matched “Saviour Child” was created in 2001 to save its sibling with Fanconi Anemia, and the technology has since been extended to treat other conditions including thalassemias, immunodeficiencies, ataxia telangiectasia, Omenn syndrome etc. Many parents who have a child afflicted by a genetic disease that they have passed on are able to reproduce another child who is disease-free and HLA-matched as a cord blood donor to save its sick sibling. While many afflicted families have welcome PGD/HLA-typing as a medical “gospel”, the technology has also raised many ethical and social quandaries, and the public in different parts of the world has far from reaching a consensus regarding its uses. This paper addresses some of these ethical issues.