I am really in two minds as I write this.
This post was prompted by a news item on Teh Grauniad this morning, brought to my attention by that esteemed daily’s twitterfeed. The title and the byline goes as:
Girl, nine, benefits from UK’s first IVF ‘saviour sibling’ therapy
Doctors treat girl with rare blood disorder by transfusing healthy bone marrow from baby brother created at IVF clinic
Intrigued, I read through the report.
The story, reporting a first-of-its-kind-in-UK procedure, is of a nine-year old girl with congenital Fanconi’s anemia, an autosomal recessive (or X-linked recessive in ~2% cases) disorder that can result in bone marrow failure; younger patients eventually develop acute myelogenous leukemia (AML), various other hematological abnormalities, kidney problems, and developmental issues, while older patients often develop carcinoma of head and neck, GI, or genito-urinary tract.
The 13 genes involved in Fanconi’s anemia (including 1 that is identical to the well-known breast-cancer-susceptibility gene, BRCA2) encode proteins that assist the recognition and repair of damaged DNA; one or more of these genes are inactivated in Fanconi’s anemia, a relatively rare disease, with a prevalence of 1-5 cases per 1 million persons (N Engl J Med 2010; 362:1909-1919). In this girl’s case, the poor parents were possibly unwitting hapless carriers (a copy each) of the inactivated gene(s), so that the girl received no active copy at all.
Therapy with androgens and hematopoietic growth factors may be effective for treating bone marrow failure in Fanconi’s anemia; however, the disease often becomes refractory to these treatments. For such patients, hematopoietic stem-cell (bone-marrow) transplantation is the only viable option, if a matched donor is available. Preimplantation genetic diagnosis is a new approach for identifying potential sibling donors for patients with Fanconi’s anemia (See the NEJM Paper above). However, the older brother of this girl was found to be an unsuitable donor, and a worldwide search also failed to find a suitable tissue donor match.
The young parents, in their 30s, chose to have an baby by in vitro fertilization (IVF), in which doctors implanted two out of 6 embryos created by IVF. Several tests showed that the implanted embryo was free of the genetic defect. One year after the boy was born and found to be a good tissue match for this sister, the doctors at the Bristol Royal Hospital treated the girl by transfusing healthy bone marrow from him. She has been monitored carefully for six-months, and is now well enough to consider returning to school.
This is a life-affirming story, as well as one of the wonders of modern medicine and applied biology. I am genuinely happy for the little girl, who got better, as well as a baby brother as a bonus out of it.
Yet, I am ashamed to admit, I cannot shake off a nagging feeling.
I have grown up on a staple of Bollywood (Hindi) movies, where sisters, brothers, parents, children were all ready to sacrifice themselves for the good of their [insert appropriate] family members. ‘Self-abnegation’ and ‘renunciation for the good of humanity’ and so forth are concepts that my parents, followers of Hindu philosophy and spiritual beliefs, drilled into me through endless mythological stories and parables and fables. So I should be comfortable with this situation where the younger brother saves the elder sister’s life, right?
And yet, I can come to no easy terms with the ideas that:
- This child, the youngest son, was not borne out of love, but merely as a tool to be utilized, even if the cause was noble.
- The bone-marrow was drawn from the child (a painful procedure per se) when he was just one-year old, much below an age where he was capable of giving consent. The boy was simply not in a position to agree or disagree to the procedure, a fact that is unaltered by the parents being empowered by law to provide proxy consent on his behalf. So, even though the son may have happily donated all his organs or even his life for his sister (à la my Hindi films), what if he refused, what if he could refuse? We will never know, will we?
Those who know me well know that I am not, I repeat, not, anti-abortion (those of you who are aware of the US scenario will appreciate the full force of that statement). I don’t consider a ball of cells (morula, gastrula, blastula) to be a living individual. I do draw a line at the fully-formed fetus, with neurological and cardiac activity, but to me, pre-partum, the mother’s health, well-being and wishes are paramount. But this is not one of those situations.
Here is a child who was created with the specific purpose of saving his sister’s life (hence the somewhat awful news-media moniker, ‘saviour sibling’). The fact that he had no say in being used thusly gives me a pause. How ethical was it to do that? Does the successful end (remission of his sister’s disease) justify the means? Will his life be just like anyone else’s? Will his parents love and cherish him like his elder siblings? Will his parents and sister be eternally grateful to him, thereby spoiling him silly and making a brat out of him? I don’t have any answer to these questions. Perhaps only time can tell.
How did you react to this news? Did any of you face the same ethical dilemma as I did? Or, am I just over-reacting or confused? Please let me know in the comments.