Savior Siblings in the United States

By Zachary Shapiro

With the emergence of new techniques in the field of reproductive technology, applications arise that seem more the realm of science fiction than reality. While many have considered stem cells to be the next frontier of modern medicine, reproductive technology may offer hope to many individuals suffering with rare and unique genetic diseases.

The term “savior siblings” refers to the use of pre-implantation genetic diagnosis (PGD) and other forms of in-vitro fertilization (IVF) in order to create a sibling for the purpose of providing biological material (bone marrow, blood, etc.) that can help treat or cure an existing terminally ill child. It is estimated that up to one percent of PGD in the United States is used to create children that are tissue matches for their siblings. See here.

There has been little meaningful discussion about savior siblings in bioethical or legal circles, and there is no formal regulation governing their use or creation in the United States. This stands in stark contrast to other countries, particularly England, France, and Australia, where a regulatory framework for the use of savior siblings has arisen along with debate over their acceptability. These countries are already discussing how to ethically deal with this extremely complicated issue. 

While works of popular fiction (such as My Sister’s Keeper) present a bleakly dystopian view about savior siblings, I believe that the issue of savior siblings is muddled by the complex ethical issues it raises. Among these is the question of who gets to decide whether or not to have a savior sibling. This problem is complex, and pits arguments concerning parental rights and autonomy, against arguments advanced about the welfare of the savior sibling. On one hand, there is a great tradition in the Western World of letting parents be the ultimate arbiter of medical and family planning decisions for their individual family unit. However, this clashes with arguments certain scholars advance that being a savior sibling is harmful to the welfare of the child.

Another issue suggests that the decision to have a savior sibling flies in the face of traditional notions of morality, and seems to eschew traditional conceptions of family planning and morality. Indeed, rarely are the reasons behind having a child as transparent and tangible as they are under this circumstance. On the other hand, I would highlight a myriad of commonly accepted motives for family planning, that while not be as transparent as the decision to have a savior sibling, often come with far less genuine good as a result. We all know cases of parents having children in order to create an heir, continue a legacy, serve as a playmate for a child, strengthen a relationship (or even saving a marriage), or to fulfill another, inherently selfish, desire of the parents. While such decisions may be frowned upon, there is no suggestion that parenting should be restricted only to those who have a “good reason” to conceive. In contrast, a great deal of genuine good comes from the decision to have another child as a savior sib, as an existing child is able to continue living, and the family unit does not have to suffer the devastating consequences of losing a child. It is thus difficult to say that savior siblings are a “worse” reason for having a child then our traditionally selfish motives.

In an issue as fraught with ethical pitfalls as savior siblings, extraordinary care and planning must be invested to ensure that the process is undertaken only when absolutely necessary, and is done so in a way that respects the dignity of the new child; balancing the myriad of ethical concerns appropriately.