As medical research and medical technology advance, inevitably difficult ethical questions will emerge. Like all serious ethical questions, medical issues do not present clear choices between right and wrong, but rather demand that we address competing commitments between two rights or two “goods.”
How do we approach what has been called “savior siblings”? Here is an important ethical dilemma: A family has a child with a rare genetic disease. Medical research has enabled treatment of that condition (usually one in which the child’s body cannot make a particular enzyme) by transplanting bone marrow from a perfectly matched donor to replace the damaged tissue in the ill child. Using tissue typing in conjunction with pre-implantation genetic diagnosis, doctors can pick a human embryo with the precise genetic match for implantation. If all goes well, the newborn will become a “savior sibling,” a brother or sister capable of donating life-saving tissue to an existing child.
Critics of “savior siblings” have argued that it is unethical to create a child who has been brought into this world as a commodity rather than as a person. Related to this criticism is the fear that if genetic selection is used to pick a donor match, that technology could lead to people conceiving, with technological help, designer babies — children who fit into some predetermined genetic template.
There is, of course, validity to these arguments and fears. An argument about the slippery slope of genetic engineering should be taken seriously. Adequate safeguards need to be in place as we gain mastery over the reproductive process, and such mastery, or attempts at mastery, need to be carefully thought through. As human beings created in the divine image, it would be immoral not to appreciate each life on its own terms and not to see each as a wondrous creation rather than as something ordered at a store to our specifications.
While this issue raises certain ethical fears, three competing arguments support the choice of conceiving a “savior” child.
First, people have children for many reasons. We do not require people to state their motivation for procreation, which in Jewish tradition is a mitzvah. Some reasons may be lofty, moral, spiritual ones; others may be as simple as having a sibling so one’s first child will have someone with whom to play. In choosing to have a second or third child, parents often consider how the baby will enhance or even complicate the life of the family. ”The pain of raising children,” as it is sometimes called in Jewish tradition, does not mean that the child will not be nurtured or loved by the parent. How the child is raised is the primary moral concern, not the intention of conception.
Second, while the slippery-slope argument should not be discarded, it is not an immediate concern. While we are capable of doing genetic matching, manipulating the human genome to achieve a desired end is not at this time possible.
Third, and most important, a sibling “savior” is conceived to do one of the most moral mitzvot in Jewish tradition: saving the life of another. When a life can be saved, the imperative of “not standing idly by the blood of your neighbor” must take precedence over policy concerns. This is not to silence the concerns or the critics, but rather to prevent the loss of a life while the debaters argue their positions. To my knowledge, no written responsa in Orthodox circles on this specific question have been offered yet. In Israel, though, ethics committees have favorably reviewed the procedure and it has happened under rabbinic supervision, thus making it a pragmatic and reasonable course of action for parents.email print