Welcome to Ethics Consult — an opportunity to discuss, debate (respectfully), and learn together. We select an ethical dilemma from a true, but anonymized, patient care case, and then we provide an expert’s commentary.
In the latest in this series, you voted on if it was ethical to help a family conceive a child whom they would give up for adoption to their neighbors, but use for marrow donation when the child is physically old enough.
Yes: 32%
No: 68%
And now, bioethicist Jacob M. Appel, MD, JD, weighs in with an excerpt adapted from his book, Who Says You’re Dead? Medical & Ethical Dilemmas for the Curious & Concerned.
The development of two distinct technologies, preimplantation genetic diagnosis (PGD) and human leukocyte antigen (HLA) testing, allows for the creation of “savior siblings” — those who can donate life-saving tissue to brothers and sisters with otherwise fatal diseases. PGD enables parents to screen embryos in advance of implantation — choosing to implant only those that have the potential to save the life of their existing child. HLA testing allows them to know which embryos to choose.
In 2001, a team of researchers in Chicago led by Yury Verlinsky, PhD, first reported using PGD to save the life of a patient with Fanconi anemia.
The Match: Savior Siblings and One Family’s Battle to Heal Their Daughter by the Pulitzer Prize-winning journalist Beth Whitehouse, which is based on a series of Newsday articles and recounts a family’s efforts to have a second child to save a daughter afflicted with Diamond-Blackfan anemia, was released in 2011. The savior sibling concept also forms the basis for Jodi Picoult’s best-selling novel My Sister’s Keeper, which was published in 2004.
The U.K.’s Human Fertilisation and Embryology Authority has authorized the practice, which is also widely available in the U.S., although no reliable statistics are available on its frequency.
The creation of savior siblings is not without its critics. Opponents of the process object to using a human being as a “commodity” to serve a particular end. They also argue that these “designer babies” are the gateway to other uses of PGD, such as the elimination of disabilities or the creation of embryos with particular appearances.
Yet the strongest critique comes from ethicists who worry about the welfare of the savior siblings themselves. Will parents treat that child differently? Will he or she feel unwanted? Will that child be unwanted — merely a necessary inconvenience generated solely to save a beloved first child? The Daily Mail poignantly quoted one such 7-year-old savior sibling, Jamie Whitaker, who said of his role in saving his brother’s life, “I know I was born to do that instead of being just born for me.”
Existing siblings who are not matches may also experience jealousy or guilt. In the case of Gary, Harriet and Arthur do not blunt their motives. They do not want a second child; they merely want a savior for the first. However, the neighbors do want a child. In that way, the situation seems not unlike many other open adoptions or surrogate births. Whether or not the savior sibling could be forced to donate in this case, should the neighbors renege, is a harder question.
Similarly, the issue would prove more difficult if the savior sibling faced a greater risk or significant medical consequence — as might occur if the second child were conceived as a potential kidney or cornea donor. It is hard to imagine a couple with a blind child and a sighted child, for example, being permitted to transfer a cornea from the latter to the former. However, there is no such concerning context in the case of Harriet and Arthur’s bone marrow transplant goals.
People have children for all sorts of reasons — some noble and others base. For the most part, the state does not look into the motives of prospective parents. A case can be made that doing so for couples who seek PGD to create savior siblings is somewhat arbitrary.
Jacob M. Appel, MD, JD, is director of ethics education in psychiatry and a member of the institutional review board at the Icahn School of Medicine at Mount Sinai in New York City. He holds an MD from Columbia University, a JD from Harvard Law School, and a bioethics MA from Albany Medical College.
And check out some of our past Ethics Consult cases:
Make Mentally Disabled Man Donate Stem Cells?
Confront Mentor Over Abusive Research?
Withdraw Life-Saving Treatment if Siblings Can’t Agree?