A sharing by Ling Sing Lin
A novel written by Jody Picoult was made into a movie with the same title, My Sister’s Keeper. In this story, a 2 year old child (Kate) is diagnosed with acute promyelocytic leukemia. Neither her brother nor her parents were a genetic match. Her parents decided to specially conceive a child, a designer baby, to be a saviour sibling.
Designer Baby
Using IVF technology and by using tissue typing, doctors can pick an embryo for implantation which is an immunological match for the sick child.
The first baby in the US to be born through saviour sibling technology was Adam Nash in the year 2000, to save his elder sister Molly who was suffering from fanconi anaemia, a genetic disorder characterized by failure of the bone marrow.
The Value of a Saviour Sibling
The saviour sibling will be used from the moment of birth, to donate umbilical cord blood, blood donations to harvest special blood components, and for more invasive procedures like multiple bone marrow harvesting for transplantation, and even for organ transplants.
Ethics and Morality of Saviour Sibling
Advances in medical and biomedical research have preceded bioethical concerns. In the US, there is no formal regulation governing the creation of a saviour sibling. In the UK, though, the Human Fertilisation and Embryology Authority has ruled that it is lawful to use modern reproductive techniques to create a saviour sibling.
Hence, it is likely that there there are more cases which have not been made public, as there is no official statistical data.
The ethics of creating a child to save another means that the child is not valued for who he is, but for what he can do for another. The psychological harm to the saviour sibling is unpredictable.
My Sister’s Keeper
Back to the story. A third child, named Anna, was conceived using IVF technology, to provide a perfect match for tissues for her elder sister. By age thirteen, Anna had undergone numerous injections, bone marrow harvesting, surgeries, etc to save her sister. As her sister’s kidneys failed, Anna was expected to donate a kidney. Much as Anna loved her sister Kate, 13 year old Anna decided to file a lawsuit against her parents, seeking medical emancipation ie she wanted to be in charge of decisions regarding her body. As to be expected, this lawsuit was tearing the family apart.
Eventually, it was revealed in court that it was Kate, the sister with leukemia, who was tired of the medical procedures to save her life multiple times, and who had asked Anna to refuse the kidney donation. The judge granted Anna’s request to be medically emancipated from her parents,
There is a twist at the end of the story. Leaving the courthouse, Anna was killed in a car accident. Being an organ donor card carrier, her sister receives her kidney and lives, and other people receive her other organs.
However, in the movie, the ending was changed to the sick sister dying. (The author was not happy with this artistic license).
lingsinglin
Dr Ling Sing Lin is a medical doctor by training. She worked in MOH HQ for many years, in policy making and administrative positions, until her retirement.
