Diamond Blackfan Anemia Summary

In Summer 2003, a small family living in the United Kingdom gave birth to a beautiful little boy named Jamie Whitaker. However, Jamie’s birth wasn’t like that of a normal child; he was born specifically to help save his four-year-old brother Charlie’s life. Charlie suffered from Diamond Blackfan Anemia (DBA), a disease that affects 700 people a year and is treated with excruciatingly painful, daily injections and subsequently, many days spent in the hospital. Jamie was one of the very first babies born through Pre-implantation Genetic Diagnosis (PGD) with Human Leukocyte Antigen (HLA), a process referred to as creating a “Savior Sibling.” Pre-implantation Genetic Diagnosis is when parents use In-vitro Fertilization (IVF) to chose embryos that

Taking a look at the moral concerns expressed, one article puts into question if it is ethical for a parent to make such a big decision as having another child, if that decision can be swayed if a child that they already have is sick. Another article states it is fine to use the “savior sibling” as long as the parent does not decide on his/her gender, hair color, eye color, height, or any physical traits while doing IVF. In other words, it’s okay to make an embryo where you know its genetic typing, but not okay to choose an embryo for its known physical attributes, such as in creating a “designer baby.” Another interesting article supported IVF with PGD and HLA, but suggested a change in the laws. It agreed with creating a baby with a genetic match to help cure a sick child, but advocated for the baby’s legal right to choose for itself. The article suggested the “savior sibling” should be 18, when it becomes their legal right to make their own medical decisions. At this time, the child can be allowed to help a sick sibling by giving anything they can offer to them to save the sick child’s life. However, the article also states that waiting the 18 years could render the usefulness of the “savior sibling” as non-effective. The umbilical cord would not be as viable after 18 years, as it would be at one or two years. Furthermore, by waiting 18 years to provide any medical treatments with either sibling, it may be too late for the sick child, as their disease may have progressed to a point where it is not as treatable, or even to the point of death. Ultimately, if this viewpoint were made mandatory, the PGD with HLA procedure, which is costly, might be for