Savior Siblings and Birthdays

Episode: 
52

Our family has celebrated three 16th birthdays, and three newly licensed drivers. Molly Nash’s 16th birthday marked a different kind of milestone: ten years since receiving a transplant to treat her otherwise fatal disease. The transplant came from her baby brother.[1]

Molly was born with Fanconi anemia, a rare genetic disease of the bone marrow. Without a transplant of stem cells from the umbilical cord or bone marrow, Fanconi anemia is fatal. Molly’s brother Adam was conceived to save his sister. Molly’s parents used in vitro fertilization—IVF—to create a genetic match for her. More than two dozen emberyos were created, and every embryo was tested. Only the five healthy, genetically matched embryos were used to attempt pregnancy.[2] All the others, including healthy ones, were discarded. Finally, one pregnancy succeeded—Adam’s. Adam’s cord blood provided the life saving stem cells transplant for Molly. Adam was a “savior sibling,” a child created to help save the life of their older sibling.

We sympathize with parents’ desperation to find a cure for their child; who wouldn’t? But the intentional creation of savior siblings raises at least two serious ethical concerns. First is intentionally creating and destroying embryos. On average only one in five embryos is both healthy and a match for a sibling.[3] The other embryos often are destroyed.

The second concern is about the instrumentalization of children. Here, “instrumentalization” refers to creating children to serve the medical needs of others. Although their parents love these children, we cannot ignore that they were not welcomed as just any child, but as a child who had passed a genetic test to meet a specific need.

Although most savior siblings donate cord blood, the first nationally discussed baby gave her bone marrow to her sister when she was fourteen months old. What if the sick sibling needed a kidney? This was the subject of My Sister’s Keeper, a novel that was later turned into a film. Because only a handful of savior siblings have been born so far, we don’t know what any long-term psychological and social effects might be.

As a parent, there is nothing more difficult or helpless than watching your child struggle with a life-threatening illness. We understand why some parents go to such great lengths to save the life of their child through any means possible. However, creating children for a medical purpose is always wrong. A better solution is to expand the registry of people willing to donate bone marrow or their baby’s cord blood. Each one of us can be part of that solution. Ask your doctor about how to donate, or visit marrow.org.[4]

Your donation may help heal a child, so they, too, can have a sixteenth birthday. That’s even better than the thrill of your first driver’s license.



[1] Dan Vergano, “Embryo Genetic Screening Controversial - and Successful,” USA Today January 10, 2010, http://www.usatoday.com/tech/science/columnist/vergano/2010-01-10-embryo-genetic-screening_N.htm (accessed May 16, 2011).

[2] Yury Verlinsky, et al., “Preimplantation Diagnosis for Fanconi Anemia Combined With HLA Matching,” Journal of the American Medical Association 285 (2001): 3130-3133.

[3] Practice Committee of the Society for Assisted Reproductive Technology and the Practice Committee of the American Society for Reproductive Medicine,” Fertility and Sterility 90 (2008): S137.

[4] Visit the National Marrow Donor Program at http://www.marrow.org to find out how to become a donor.

 

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