Savior siblings are the topic of Jodi Picoult’s novel “My Sister’s Keeper,” but they are also a reality. Savior siblings are children conceived for the purpose of providing a tissue match for an older sibling who is in need of tissue transplants to treat a life-threatening illness. In England, this practice has been explicitly allowed by the new Human Fertilisation and Embryology Act 2008 under some strict conditions. In France it is authorized by the Bioethics Law of August 2004 (Madanamoothoo, 2011). Several cases have been performed in the United States since Adam Nash was born as the first successful example of the use of Pre-implantation Genetic Diagnosis (PGD, described below) to select and implant a Human Leukocyte Antigen (HLA, described below) compatible embryo for the purpose of being a savior sibling (Lai, 2011).
These savior siblings are typically used for the purpose of donating cord blood stem cells (this procedure does not affect the child in any way) or bone marrow in extreme cases (the harvesting of bone marrow is associated with significant pain and some risk). Savior siblings are not currently created to provide non-renewable tissue such as a whole organ (Sheldon & Wilkinson, 2004). The creation of children for the purpose of harvesting organs is still condemned by the international medical community at large.
The question of savior siblings is a contentious legal and ethical debate in the secular world. Arguments in the secular world, both for and against, tend to center around issues of autonomy of the donor child, and the purpose for which the embryo is conceived. Briefly, opposing arguments may be summed as follows:
- The children so created are essentially commodities
- It is a short slide down a slippery slope from Savior Siblings to “Designer Babies,” babies genetically tested and selected for traits such as intelligence, athletic ability, disease resistance, etc.
- The claim that donor children will be inadequately protected from physical or psychological harm (Sheldon & Wilkinson, 2004).
Amy Lai (2011) adds the argument that the only person who can make a decision about whether or not to be a donor is the person donating, i.e. the child, effectively denying the ethicality of savior siblings.
These arguments are of varying strength with Catholics. The argument that creating a child as a means to any end is wrong rings especially strong with Catholics raised on John Paul II’s crystallization of Catholic Personalism: “This personalist norm, in its negative aspect, states that the person is the kind of good which does not admit of use and cannot be treated as an object of use and as the means to an end” (Wojtyla, 1960).
This primary insistence upon the absolute uniqueness and intrinsic worth of each individual human person cannot be overstated, and the fact that secular commentators such as Lotz (2009) and Sheldon &Wilkinson (2004) both answer this objection by comparing conception in order to save another child to conception for any other reason (e.g. to create an heir, to “complete the family,” to please a parent, to save a marriage, to have more children to work the farm, etc.) is not without merit. There are, of course, many selfish reasons to conceive a child, it is simply that with a “savior sibling” you cannot even pretend that it is primarily about the good of the child so conceived.
For a Catholic, however, these three objections are not the primary reason for objecting to savior siblings. The conception of a savior sibling involves three separate procedures, two of which are incompatible with Catholic moral teaching.
Creating and implementing a savior sibling is a three step process:
- In Vitro Fertilization (IVF):
- IVF involves creating embryos in test tubes by combining sperm and ova from the prospective parents. The Church teaches, of course that creation of human life outside of the marital embrace is contrary to human dignity, and so IVF is a show-stopper for faithful Catholics: There is an “inseparable connection, willed by God, and unable to be broken by man on his own initiative, between the two meanings of the conjugal act: the unitive meaning and the procreative meaning” (Pope Paul VI, 1968, Article 12).
- Pre-Implantation Genetic Diagnosis
- Of the embryos created, not all are compatible with the diseased child who needs the transplant. Human Leukocyte Antigen is a complex string of proteins that is attached to the membrane of every cell in the human body. It identifies that cell as “self” so that the body’s defenses will not attack it. Every human being’s HLA is slightly different, and the more different it is, the greater the likelihood and severity of a rejection reaction. Therefore the embryos have to be tested for two separate criteria. They must be free of the genetic disorder they are created to treat, and they must be HLA compatible with the diseased sibling (Thomas, 2004). All embryos that do not match these criteria are deemed unusable and are discarded or frozen as raw material for later research.
- The old way of doing this selection was to implant the embryos created in IVF into the woman’s uterus, and conduct pre-natal testing on them, aborting ones that did not meet the desired criteria. PGD allows the testing to be conducted in-vitro, prior to implantation, and therefore is touted as an advance because only the desired embryo is implanted, reducing the need for abortions (Thomas, 2004). This completely ignores the Catholic objection that human lives are being created and discarded as waste.
- Harvesting Stem Cells:
- The harvesting of stem cells from cord blood does not harm or even affect the baby in any way. It simply extracts pluripotent stem cells from an umbilical cord before it and the placenta are discarded as medical waste and so far as I could tell is not a morally contentious process. The creation of another person primarily so that there will be cord blood to harvest, is very morally contentious. However, cord blood may not even be the end of the story. Hematopoetic stem cells (cells that differentiate into blood cells) may be required, and involve bone marrow transplants, a painful and moderately risky procedure (Thomas, 2004). The repeated used of a child for such procedures prior to the age of consent is certainly morally problematic to say the least.
In summary of the above, it must be clearly understood that IVF assisted reproductive technologies always involve the creation of many embryos, only one of which will be implanted and allowed to develop. The rest will become what Nicholas Mason calls “Sub-versions” in his dystopian novel, “The Sub-Version Complex.” That is, they are frozen, unwanted, humans that have no legal standing or protection and can be incinerated or experimented upon by anyone who signs for them.
A troubling possible consequence of the use of PGD is the advent of so called “designer babies.” Brazil has already used IVF/PGD to screen embryos for parents at risk for B-Thalassemia (Figueira, et al, 2012). China has done the same, citing higher parent expectations of their children following the implementation of the one-child policy (Sui & Sleeboom-Faulkner, 2010). Australia has done likewise even earlier (Spriggs & Savulescu, 2002) and as of 2004 had done more IVF/PGD savior sibling procedures than anyone else, (more than 140 babies born after IVF/PGD between 1997 and 2004, with a 20 – 42% success rate) (Thomas, 2004).
Once we create and test embryos for genetic abnormalities, why should we not also create and test them for traits that we personally happen to value, such as sex? Sex selective abortions are a sure way to raise an outcry from the feminists, but if we are discarding embryos before they are implanted? What’s the problem?
Or maybe you want your baby to have an IQ of 150? With advances in genetic technology, it shouldn’t be too hard (eventually) for scientists to run genetic sequencing on a batch of embryos and determine which ones have the best genetic combination for intelligence. Or athletics. Or blond hair and blue eyes. In the popular press when people talk about “genetic engineering” they evoke images of scientists in white lab coats carefully and deliberately mixing and matching the parts of the genetic code that they want to create a carefully designed organism. In reality, it is more like a crap-shoot with loaded dice. Most of the time it doesn’t work, but sometimes you get the results you want. If you have no respect for human life that isn’t a problem. Just discard the unwanted results (i.e. the human embryos) and concentrate on the ones that happened to come out right.
Even the most advanced technique for editing DNA, known as type II Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR)/CRISPR-associated (Cas) system has not improved beyond a 50% success rate. It is a hugely promising technology that might one day allow scientists to repair genetic defects down to a single base pair substitution (Sander, & Joung, 2014). However, it can also be misused and abused.
The science is amoral, even laudable in and of itself. All real advances in human knowledge of God’s creation glorify God, at least indirectly. The problem is not the knowledge or the ability, but the underlying attitude with which these are applied. The problem is our lack of gratitude and humility. The current and possible future abuses are consequences of what I call “godlike doctor syndrome.”
When I went through the trauma lanes in the Special Forces Medic course the instructors had a scenario that they would put one student in each small group through. In this scenario the patient was an IED blast victim, and he was unsaveable. No matter what you did, even if you performed flawlessly, the patient continued to deteriorate, and as he did so you would see your grade deteriorating as well. At the end of the scenario the instructor would reveal that it was rigged, and the patient was never intended to survive. The moral was simple: people die. Medics cannot fundamentally change that fact. We can sometimes delay it, but we cannot ultimately prevent it and we must absolutely know this about ourselves.
In our technological world, however, researchers and more “advanced” doctors are becoming increasingly uncomfortable with this truth. We want power over life and death. We have discarded God as the author of life, and so we are without hope. Without hope suffering and death are the prime evils, and any means whatever become licit to stave off that death. The person, particularly the person in the lab coat, becomes the final arbiter of right and wrong. This is not so different from Adam and Eve who wanted to be like God, deciding for themselves what is right and wrong, good and evil.
Without the infallible and unchanging voice of the Church, moral questions become “ethical” and “legal” questions. The reasoning about them and the answers is based upon the unquestioned assumptions of the age, the values of a particular cultural milieu, rather than transcendent moral realities. The result is guaranteed to be chaos. There is no limit to what humans can and will mess up when we refuse to be guided by God in His Church.
Figueira, R. C. S., Setti, A. S., Cortezzi, S. S., Martinhago, C. D., Braga, D. P. A. F., Iaconelli, A., & Borges, E. (2012). Preimplantation diagnosis for β-thalassemia combined with HLA matching: first “savior sibling” is born after embryo selection in Brazil. Journal of Assisted Reproduction and Genetics, 29(11), 1305–1309. doi:10.1007/s10815-012-9862-3
Lai, A. Y. (2011). To Be or Not to Be My Sister’s Keeper?. Journal Of Legal Medicine, 32(3), 261-293. doi:10.1080/01947648.2011.600169
Lotz, M. (2009). Procreative reasons-relevance: on the moral significance of why we have children. Bioethics, 23(5), 291-299. doi:10.1111/j.1467-8519.2008.00656.x
Madanamoothoo, A (2011) Saviour-sibling and the psychological, ethical and judicial issues that it creates: should English and French legislators close the Pandora’s Box? European journal of Health Law, May 2011, Vol.18(3), pp.293-303
Pope Paul VI, (1958) Humanae Vitae. Retrieved June 02, 2015 from http://ncbcenter.org/page.aspx?pid=1234
Sander, J. D., & Joung, J. K. (2014). CRISPR-Cas systems for editing, regulating and targeting genomes. Nature Biotechnology, 32(4), 347-355. doi:10.1038/nbt.2842
Sheldon, S., & Wilkinson, S. (2004). Should selecting saviour siblings be banned? Journal of Medical Ethics, 30(6), 533–537. doi:10.1136/jme.2003.004150
Spriggs, M., & Savulescu, J. (2002). “Saviour siblings”. Journal of Medical Ethics, 28(5), 289. Retrieved from http://search.proquest.com/docview/216348026?accountid=2280
Sui, S., & Sleeboom-Faulkner, M. (2010). Choosing offspring: prenatal genetic testing for thalassaemia and the production of a ‘saviour sibling’ in China. Culture, Health & Sexuality, 12(2), 167-175. doi:10.1080/13691050902914110
Thomas, C. (2004). Pre-Implantation Testing and the Protection of the “Saviour Sibling”. Deakin Law Review, 9(1), 119-143.
Wojtyla, K. (1960) Love and Responsibility. Translated from the Polish 1981 by Willets, H. T. Ignatius Press, San Francisco.