But who will save the savior sibling?

In my Immunology class a few weeks ago, we were discussing Severe Combined Immunodeficiency Disorder (SCID) - a rare primary immunodeficiency that results in disturbed B-cell and T-cell development, leading to persistent infections and an increased risk of fatal outcomes. The term "bubble boy" originates from one form of SCID known as ADA-SCID, which should indicate how serious this disease can be. We learned in class that hematopoetic stem cell transplants (HSCT, aka bone marrow transplants) are the current preferred method of treatment as gene therapy is still being researched, and CRISPR is still too early in its clinical infancy to be used.

HSCTs require close matches to a number of proteins collectively referred to as human leukocyte antigens (HLAs) which are important for the recognition of self-cells to prevent the immune system from attacking the host. HLAs are found on all organs and self-cells, if I remember correctly, which is why donor matches are critical to minimize the risk of rejection. Although near matches can be found in complete strangers and such transplants have been successful, the lowest-risk donor tissues can be found in family members due to genetic similarity.

While I was researching alternative SCID treatment options, I stumbled across several news articles referring to what are called "savior siblings." Wondering why this might be newsworthy, I read a few of the articles. It seems that savior siblings are children born for the express intent of harvesting an organ or bone marrow to obtain a close HLA match to maximize the chances of another child's survival. I had a rather visceral reaction to reading this: on the one hand, a life was being saved, but on the other hand a life was being brought into the world chiefly to be viewed as a bag of organs.

This isn't to say these children do not go on to live normal lives, but imagine learning that you were only born so your elder sibling would not die. Heroic bragging rights aside, this seems cruel, as though the savior sibling's existence is only qualified by the need for his or her organs. Now, I speak from a point of view in which I have never had children, nor needed a savior sibling, so perhaps my view is narrow and ignores several critical deciding factors. For parents who already have a child and consider this course of action, surely two living children are better than no children at all. But I wonder whether the validity of a life is challenged when it is conceived as a means to an end. Is life worth living when your life wasn't intended for you?