Posted on February 20, 2019 at 1:55 PM
By Elizabeth Andersen
Originally named ‘medicine babies,’ savior babies have been a more recent discovery in the medical world, presenting families with a quick fix to dealing with terminally ill children. In 2015, the Journal of Medical Ethics wrote a piece on ‘Savior Siblings’ and the ethical implications that arise when considered as a potential solution to difficult situations, showing the rising popularity of the subject. This article will provide a brief background on the history of savior siblings within the United States and how it has been portrayed in the media. I will explore law, or lack thereof, surrounding savior siblings and how this can affect future complications when it comes to the procedures that create savior siblings. I will analyze the moral foundation of Bioethics to help comprehend the complexity of the issue of savior siblings. Further, I will rationalize the ethical dimensions and questions that could stem from the morality of savior siblings and the possibility of potential abuse. And finally, using the foundation and dimensions that Bioethics has to offer, I will propose policy recommendations that could benefit the future use of savior siblings, especially as technology advances.
Adam Nash was born in 2000 in the United States as the first ‘savior sibling.’ His sister, Molly, was born with a specific type of anemia; doctors explained to her parent’s the best way to cure her was to have a savior sibling. As soon as Adam was born, his umbilical cord was used as a bone marrow transplant for his sister. A savior sibling can be defined as a baby born in order to help save their sibling by the use of compatible parts. Because children with the same parents have a one and four chance of sharing the same Human Leukocyte Antigen (HLA) genes, sometimes the only means to save a child from a terminal disease is through a savior sibling. However, there is no guarantee of success if parents elect to move forward with this option. Three-fourths of a chance still remain in which the HLA genes of the savior child will not match their older sibling. What set Adam Nash’s case apart from others, was that Adam was also a “designer baby”. His parents conceived him through preimplantation genetic diagnosis and in vitro fertilization. This type of procedure involves the collection of sperm and eggs in a petri dish, followed by genetic testing of the HLA genes. When a match is identified between the HLA genes of an embryo and that of the terminal older child, that embryo is implanted in the mother. While Adam Nash only donated his umbilical cord to his sister following birth (that being the extent of his donation to save his sister’s life), it is important to look beyond this instance and consider what savior siblings could be used for in alternative situations.
My Sister’s Keeper is a 2004 book written by Jodi Picoult and then later, in 2009, turned into a film. The story follows a young girl named Anna suing her parents for medical emancipation. She is a savior sibling for her sister Kate who is terminally ill and has begun to experience renal failure. Such a diagnosis would require her younger sibling to give her one of her kidneys. When Anna realizes having only one kidney translates to a predetermined future for herself, she tells her parents that she does not want to give Kate her kidney, ultimately tearing the family apart. While this novel is fiction, Jodi Picoult has talked about the ways in which she came to research this topic of savior siblings and how it relates to her own life. At the age of 5, Picoult’s son was diagnosed with cholesteatoma which resulted in numerous surgeries due to the tumors in his ears. Picoult has expressed that during those difficult times, there was no question that she would do anything for her son and that her family, including her other children, understood they came second to his well-being. The novel raises important questions when considering savior siblings such as what type of measures can a family take against one child in order to help save the life of another? At what point are you infringing upon the rights and autonomy of the savior sibling? And are savior siblings, at all, ethical?
In law, there is little being said about savior siblings. As of right now, there are no federal regulations, or guidelines concerning savior siblings which has provided the scientific field with an unsupervised platform to do as they see fit. The closest thing the United States government has to being involved in this specific field is the 1992 Fertility Clinic Success Rate and Certification Act (FCSRCA). This statute required Assisted Reproductive Technology Clinics to report their data to the federal government. It also required the Center for Disease Control to develop a model for these clinics to follow in order to obtain certification for embryo laboratories. While this is the only type of regulation placed on Assisted Reproductive Technologies, there is nothing specific in this statute about savior siblings. Written in 1992, this statute is outdated and does not accurately represent the scientific field today. This lack of regulation could gravely affect the future of savior children and how they are treated. If corruption is occurring, there is no system in place monitoring and appropriately taking action against such said ethical dilemma.
When there is a lack of law, there is theory to be applied. Observing savior siblings in an ethical framework, specifically Bioethics, could help others better understand what is at stake and what the moral implications are. Further, it could help demonstrate what to do next in a growing technological climate. There are four basic principles to Bioethics: (1) respect for autonomy, (2) beneficence, (3) non-maleficence, and (4) justice. Each of these principles has equal importance and complexity when dealing with ethical decision making. Respect for autonomy most literally means the ability to respect a person’s agency and liberty when it comes to actions without any type of coercion involved. Situations where medical help is essential, it becomes complicated when considering consent and the capacity of the patient. Beneficence is the active duty to benefit the patient. It is the minimization of pain and suffering with the best interest of the patient in mind. Non-maleficence is best defined as do no harm. This weighs heavily with the decisions of caretakers when deciding things such as: (1) withholding or withdrawing life-sustaining treatment, (2) extraordinary and ordinary treatment, (3) sustenance technologies and medical treatments, (4) intended effects and merely foreseen effects, and (5) killing and letting die. Lastly, justice is the equitable treatment of everyone. It is the ability to acknowledge vulnerable or disadvantaged groups and ensuring the decisions that are made are most equitable to everyone. With these four principles, not one more important than the next, people in the medical field are able to guide themselves through a difficult ethical process.
Bioethics in relation to savior siblings is fundamental in explicating the dynamics of the physician, the child, and the parents. When it comes to autonomy, it is important to consider whose autonomy is being represented over the other. The autonomy of the parents seems to supersede that of the savior child (even after the child is born). What happens when children are not able to make decisions for themselves? When their autonomy is not seen legally? The savior siblings self-rule is threatened even before they are born. There is a prioritization of autonomy here- one child over the other. Nonmaleficence is also influential because at what point does this principle terminate? If a doctor promises to do no harm, who is he promising- the child or the parents and to what extent? The good the savior sibling will do for the sick child must be weighed to the suffering it will cause the savior sibling. How sick is the child and if he or she gets treatment from a savior sibling, will it benefit in the end? If the treatment does not work,
was it all for nothing? How can these risks and benefits to two different people be compared? These are just some of the questions that are brought to light when analyzing savior siblings in a Bioethics framework.
There are many ethical dimensions and questions that arise when investigating savior siblings. A fiduciary duty is a legal responsibility between at least two parties (a doctor and a patient). It is a relationship acknowledged to have unequal power and, therefore, needs special attention. Because of the skill and knowledge the doctor has over the patient, the patient’s interests must be involved when a physician provides medical advice. The physician must work to ensure the information and suggestions he gives are what’s best for the patient. When it comes to the procedure of in vitro fertilization and genetic modification to create a savior sibling, the physician must consider all lives involved. It cannot be just the interest of the parents recognized, but the interests of the sick child, the savior sibling, as well as the embryos used and disposed of that are also just as paramount. Does the sick child have the desire to live and deal with their illness? Does the savior sibling want to be created for the purpose of another life? And lastly, is it ethical to dispose of embryos not used? Part of this practice involves taking multiple eggs and sperm and fertilizing them. When the doctor finds the embryo with the genetic match to the sick child, all other embryos are discarded. Depending on what one may consider as life, this could be a heinous act committed. If a doctor wants to keep his fiduciary duty, he must consider all these aspects.
Now that it has been established that there are multiple ethical conundrums when dealing with savior siblings, I will consider some policy and practice recommendations. The United Kingdom is a perfect place to look. Because the government of the United Kingdom has consistently been concerned and involved with the medical field, there is more regulation and organization behind some of these technologies. In the United Kingdom, it is required that a clinic is licensed in order to perform the savior sibling procedure. In 1990, they established a Human Fertilization and Embryology Act which allows for testing and tissue matching for savior siblings but under very strict criteria. It wasn’t until 2006 that the act was updated to include the permission of savior siblings “to enable the identification of a tissue match for an older sibling suffering from a life-threatening illness, where umbilical cord blood is to be used in treatment.” In 2009, the Act was amended to detail that no whole organs can be donated from the child. With such guidelines and regulations, there is room for studying savior siblings without complete freedom for the physician to do as they please. There is also a clear value of life for the savior sibling when the act denies right to organ donation. The United States can learn from the United Kingdom and while this does not solve all the problems of whether such procedures are humane or not, it limits the wrong that can be done and instructs the future.
Naturally, there is no concrete answer to the ethical dilemma behind savior siblings. As this technology advances so do the implications. For humans, it seems impossible to determine whether altering life is truly the right thing to do. Is intervention of deadly diseases always permissible? What happens when another life becomes involved in the solution? Just because there may never be a perfect answer to the morality of savior siblings, there should be codes to follow for the best possible outcomes. Analyzing other countries’ laws could benefit the United States in determining how something such as savior siblings should be managed. Medical technology is imminent and regulation is imperative for a virtuous future for savior siblings.
Elizabeth Andersen is a current candidate in the Ethics and Society Master’s program at Fordham University.