Case Study in Savior Siblings
Introduction: Some diseases, such as certain leukemias and anemias, require a bone marrow transplant as part of treatment. However, bone marrow transplantation requires a donor that is an immunological match to the recipient. Typically the best option is a family member, specifically a sibling due to shared parents. Siblings have a 1 in 4 chance of matching each other based on inheritance of the same HLA genes from their parents (there are 4 possible combinations; see Figure 1). Given these odds, it is not surprising that
Case Study (a true story): Jack and Lisa Nash's daughter Molly was born with a rare, incurable genetic condition called Fanconi anemia, which rendered her body unable to produce enough blood cells. Molly's best, and likely only, chance of survival was to find a bone marrow donor. The best bone marrow match is typically with a sibling, but Molly was an only child. The Nashes had always wanted to have more children. But, because Fanconi anemia is an inherited condition, they knew that any future children also had a chance of getting the disease, for which Jack and Lisa were carriers. Eventually, Jack and Lisa Nash underwent in vitro fertilization followed by pre-implantation genetic diagnosis to choose an embryo that would have HLA genes that matched Molly and that would also be free of Fanconi anemia. After four in vitro fertilization attempts, Lisa Nash gave birth to a baby boy, Adam, on August 29, 2000. Adam's placenta was gathered immediately and all the cord blood saved. Molly started chemotherapy to destroy her bone marrow and received a transfusion of the cord blood cells a month later. The transplant cured Molly's bone marrow failure, but she still suffers from Fanconi anemia and visits the doctors 35-40 times a year to screen for solid-tumor cancers. A common cold could have dire consequences for her, but her bone marrow is functioning normally.
Please take our poll and leave a comment explaining your point of view. We welcome all opinions and strive to start a meaningful discussion.
References
Faison, Amanda. "The Miracle of Molly". 5280: The Denver Magazine. August 2005.
Image Credit: National Cancer Institute
Image Credit: Flickr
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Although I find the idea of using one child as means to an end for another child, I also find that the action in this case was permissible. It is noteworthy that the child that was conceived was free from anemia. Also, the "donor" child did not undergo any invasive procedures, such as a bone marrow extraction.
All good points. How to ensure greater good while still allowing reproductive freedom? Make life to save life sounds right to me..Customize life doesn't. How to regulate the latter? Not all traits are easily categorizable into clear +/- categories.
Laura mentioned PGD. Here are some Scitable articles for some background.
PGD facts
http://www.nature.com/scitable/topicpage/prenatal-screen-detects-fetal-abnormalities-306
PGD ethics
http://www.nature.com/scitable/topicpage/embryo-screening-and-the-ethics-of-60561
I didn't find this case particularly troubling because the Nashes already wanted to have more children. I think the decision would be more complicated if the couple didn't already plan to have more kids, since it would then feel like they were having the child specifically to use it as a donor. I'm not convinced that would be a good reason for creating another human being, both because of the moral dilemma in creating/treating a human as a tool and because overpopulation is at the root of many of our ecological & environmental problems.
If you look at this case dispassionately, it is easy to judge the Nashes for pushing the boundary of what PGD was originally developed for (to avoid passing serious heritable diseases to offspring). But ask yourself what you would do if one of your children was sick and required a bone marrow transplant but no donor was available. Would you really let your child die to avoid crossing into an ethical gray area? I think many parents would do exactly what the Nashes did, given the option.
I agree with above commentator- this is a slippery slope. Designer babies anyone? Look at our societies today- Do you really trust that people would rise above 'keeping up with the Jones' in this instance? Or will all the children look, act and think the same way one decade to 'fall out of fashion' the next. Will we give up the unique individuality that genetic recombination ensures- where would the fun in life be without the serendipity of letting the miracle of life unfold before you? I can't even conceive of what psychologically it would do to the child- either they will feel God like or they will be burdened with knowing that they were intrinsically not wanted (they were brought into being to fulfill a man-made purpose) or at least not wanted in the unique form the course of nature would have dictated.
For me, the main ethical dilemma here is that an embryo with a specific genotype is chosen over others. While in this scenario, the practice, I believe, is acceptable, the practice can be easily abused in time as parents choose characteristics that they deem favourable to their progenitors.
