Child Autonomy and the Rights to One’s Own Body: PGD and Parental Decision Making

February 13, 2013

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How far would you go to save your child’s life? Would you put your own life at risk? Would you put someone else’s? Imagine yourself the proud parent of a beautiful, healthy child whose first three years of life have brought you endless moments of happiness. Now picture that same child developing a life threatening illness, such as leukemia or Diamond Blackfan anemia. All of the sudden, your unbounded love for the child leads you to dedicate the rest of your life to saving hers, and yet that still is not enough. You are not an exact tissue match for the child, and therefore you cannot donate blood or bone marrow in order to save the child. Confronted with an unacceptable conclusion to your child’s life, her physician suggests that you create a child, a “savior” sibling, who can.

Pre-Implantation Genetic Diagnosis and Savior Siblings

The use of pre-implantation genetic diagnosis, or PGD, to create children that are exact tissue matches to ill siblings, also known as savior children, has gradually become a widespread practice in the United States. As of 2006, more than 15,000 PGD cycles have been reported in the United States and the number continues to grow exponentially as its use for reasons other than medical ones, such as sex or physical trait selection, becomes more and more common. Of these, approximately one percent was used to create children that were tissue matches for their siblings (Whitehouse 127). Neither the United States government nor independent PGD clinics/ hospitals keep an exact number of how many savior siblings are created through PGD, nor how many cases are successful, which means that they result in one sibling curing the other. This essay explains the process of PGD as well as gives examples of a variety of its uses, with a focus on analyzing its role in creating savior siblings. The ethical issues discussed include autonomy, the commodification of a child, and fairness. The case of creating a child only for an umbilical cord donation, which is fairly simple and harmless, without further exposure to medical procedures involving donation shall not be discussed in depth. This essay will instead delve into continuous or life-threatening/ altering uses of PGD, such as having the savior sibling donate throughout his/ her entire life or offering the savior sibling up for an organ transplant. Beth Whitehouse’s book The Match and Jodi Picoult’s novel My Sister’s Keeper will be referenced various times as primary sources/ case studies of families who created a savior sibling through PGD. The essay intends to portray the three ethical principles/ theories (utilitarian, deontological, and ontological) through the main family members, incorporating the ethical issues related to each one. There is also an introductory focus on the ill and savior children’s physician and his or her responsibility to both patients. It ultimately answers the question: In PGD cases involving savior siblings, is there a limit to the decisions parents can make for their children, and if so, when should the siblings be granted the autonomy to make choices for themselves? Parents should only be allowed to make medical decisions for their children up to the point where one or both children’s lives can be significantly altered due to an invasive procedure, such as a kidney transplant, or the savior child is old enough to make his or her own choices regarding medical treatments (at the age when the child determines he or she no longer wants to be the ill child’s donor).

What is PGD?

What exactly is PGD? Pre-implantation genetic diagnosis is a recently developed reproductive technology used to screen for genetic diseases such as cystic fibrosis and Down syndrome in embryos that have been created through in vitro fertilization (IVF). IVF is the process through which a doctor/ PGD specialist places an egg and various sperm into a glass test tube (hence, in vitro) and waits for the sperm to fertilize the eggs. Multiple embryos are created through this process and then screened so that those which match the characteristics parents demand are selected to survive. The specialist chooses the embryo that is then placed back into the child’s mother, who often undergoes a normal pregnancy. The first documented use of PGD occurred in London in 1989, when a mentally disabled couple paid to have their embryos created in a laboratory and tested to ensure that their child did not have their illness. Since then, PGD has become a multibillion dollar business, with prices of around $18,480 per attempt including IVF (Whitehouse 127). PGD is prohibited in countries such as Italy and Germany and faces many limitations in others such as England, France, and some Asian countries (such limitations imposed by the Human Fertilization Embryology Authority (HFEA) include that parents can only use it to screen a child for a hereditary illness). This leads those rejected in other countries to travel to the United States purposefully to perform PGD for a variety of reasons.

The Uses of PGD (Focus on Savior Siblings)

Although some of its uses are much more ethical and justifiable than others, such as using it to save a child from having a life-threatening disease versus selecting for superficial traits such as eye and hair color, the purpose of PGD is to create a “designer baby”. Pre-implantation genetic diagnosis and IVF can help infertile couples have children. PGD’s most common function in Western culture is to generate a child that will help “family balance”, or allow parents to have both a boy and a girl and thus even out their family. Even though it was created with the purpose of screening for inherited diseases or mutations such as cystic fibrosis and Down Syndrome, PGD has evolved into screening for certain physical characteristics such as the sex of the child or hair and eye color as well. The future of PGD is fairly unlimited; although the technology cannot perform such functions now, it may one day be used to screen for the mental capacity or athletic talent of one’s child.

For the purposes of this essay, PGD’s main goal is to create a child through IVF and to screen the resulting embryos for exact HLA (human leukocyte antigens/ bone marrow, DNA found on chromosome six) matches to a sick child. The first documented case of a savior sibling created through PGD is Adam Nash, who was born on August 29, 2000 in Colorado in the United States. His sister, Molly, was diagnosed with Fanconi anemia when she was six years old, and the only potential cure involved the transplant of stem-cells found only in umbilical cord blood or bone marrow. Afraid of having another child that was not Molly’s exact HLA match, the Nash family used PGD to create Adam. The transplants were successful, and PGD has since been used for many other savior sibling cases in the United States and other countries such as England and France.

Creating a savior sibling through PGD may seem perfectly acceptable at first. At least to parents, creating and loving a child that will save their dying one certainly is. There are, however, many ethical issues that arise and complicate the situation in terms of both the savior and sick child’s autonomy and the quality of life the savior child will lead. The three major ethical dilemmas in the creation of a savior sibling each come with their own set of equally difficult questions to answer. In terms of autonomy, when do parents lose the right to make choices for their children? When do children gain/ earn those rights? Are they born with rights to their own bodies and therefore a say in the medical procedures they will undergo? The second issue, commodification, implies that the savior child is more like a consumer good that can be purchased and used than an actual human being created with the sole purpose of joining a family, being loved, and setting his or her own goals, an important concept of autonomy. Albeit regarded as a hero, is the savior sibling just a commodity, purchased with a purpose to fulfill? Even if money is not taken into consideration, is it okay to treat a child as a “bank of parts” or to constantly use the child? Where does one draw the line between allowing the savior child to undergo harmless, helpful operations and making the child donate a kidney, a potentially very harmful surgery, as well? The final issue is fairness, specifically directed to the way the savior child is treated in relation to his or her ill sibling. Is it fair for a perfectly healthy child to spend just as much time in the hospital and undergo practically as many medical procedures as an ill one? Should anyone be expected to perform that responsibility potentially forever, despite their desire not to? How is another child who is not directly involved in the donation or recipient process affected by all of this? Can the ill child refuse treatment if it is not in his/ her best interests (when the child can determine so)?

Stakeholders

As in any ethical situation, there are various stakeholders in the creation of a savior child, some much more apparent than others. Although he or she is not the most important one, the ill child’s physician and the medical community in general is the first stakeholder mentioned because he or she is also the catalyst that begins the entire process by suggesting that parents create a savior child as their last sliver of hope. Then, of course, there are the family members (the parents, the savior sibling, the ill child, and the problem, or “other” child), each of whom I analyze through one of the three ethical lenses: the utilitarian, deontological, and ontological perspectives. Even though several of the family members can be discussed through more than one of the lenses, each member has been assigned one in which he or she best fits, or more specifically, one that best describes the behavior, actions, and position each one takes in a savior sibling case.

Case Studies

This is essay is based on two main case studies, one a true story and the other a novel. Beth Whitehouse’s book The Match documents the Trebing family’s attempt to save their daughter Katie, born with a rare blood disorder named Diamond Blackfan Anemia), by using pre-implantation genetic diagnosis to create Christopher. He serves the purpose of both becoming a third member of the family and of being Katie’s exact HLA match, donating umbilical cord blood and later bone marrow to his ill sister. They have another son (their first) named Calvin, who grows up causing more and more commotion and acting up just to attract attention from his parents, who seem to focus solely on curing their daughter. In the end, the blood transfusions and bone marrow transplants are successful in curing Katie, and the Trebing family remains proud of their decision to use PGD.

In her novel My Sister’s Keeper, Jodi Picoult writes an extremely similar and emotionally moving story, except that Anna, the savior sibling, is thirteen and faced with the possibility of undergoing invasive surgery just to donate a kidney to her sister, who is dying of leukemia. The procedures poses potential death risks for both sisters, yet like always, their parents are more than willing to allow Anna to undergo the surgery. Anna shocks them by filing a lawsuit against them for the rights to her own body, refusing to continue donating any part of her to Kate. The rest of the novel centers around whether Anna is mature enough to make that decision and whether she is aware of the consequences of refusing to save her sister, as well as Kate’s own decisions throughout the process. It turns out that she had convinced Anna to file the lawsuit out of her own desire to die, which brings up the question of how much of a say she should have in her medical care decisions. The novel also features Jesse, their older brother who becomes a pyromaniac out of the need to receive the attention his parents neglected him. In this novel, the choice of using PGD to create a savior sibling is portrayed as a violation of both children’s autonomy.

The Physician’s Role and Responsibility

The physician who treats the ill child is an important stakeholder because he or she is usually the one who starts the entire process by bringing up the concept of a savior sibling as a beacon of hope to desperate parents who would do anything to save their child. Since the doctor is solely doing his or her job and looking out for his patient’s best interests, he or she might not fully realize the unethical chain of events that results from a mere suggestion. As stated in a modern version of the Hippocratic Oath, which more physicians now tend to recite, “I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability.” The phrase “not a cancerous growth, but a sick human being” is extremely powerful; it almost justifies the doctor’s choice to bring up savior siblings in order to save the ill child at all costs while knowing that the child born through PGD will be born as the means to an end. In such cases involving savior siblings, the doctor will most likely be the savior child’s physician as well. However, before that child is even born the physician’s responsibility lies first and foremost with the ill child, which could explain why he or she orders potentially painful/ harmful procedures such as bone marrow transplants or even organ transplants to be performed on the savior child. It is not done out of wanting to hurt the savior child; it is done out of wanting to save another. After all, a physician’s code of ethic states that he must do as much as possible to save an ill patient, which adheres to the parents’ thoughts in such a situation as well.

When charged with taking care of one patient, the physician must devote him or herself completely to that person, but when the possibility of creating a savior sibling emerges, the doctor also knows that that new child will be his or her patient as well. From the beginning, though the doctor’s thought is the catalyst that sets off the savior sibling process, the doctor is only doing his or her responsibility in presenting a possible last resort to the parents, which they at least deserve. The doctor does not make the choice for them, however, and must explain to them the consequences of creating a savior child though PGD. In The Match, Kate’s physician states that “In the best-case scenario, the donor child wouldn’t be called upon again. However, Lipton warned, if the cord blood wasn’t sufficient… the new baby’s bone marrow would have to be removed from the hips… a potentially painful procedure… The Trebings needed to consider whether they were willing to take that path, which involved some medical risk to the new child” (Whitehouse 15-16). In many cases, the physician has most likely become emotionally connected to his or her first patient and wants to save him or her and bring the family closer together. The physician is, however, also looking out for the rights of the savior sibling, which, when he or she proposes the idea, is only a thought and a solution, not yet a living breathing person who wants to make his or her own autonomous decisions. Eventually, if further donations than umbilical cord blood and one bone marrow transplant are considered necessary, the physician may want to step in and advocate for the rights of the savior child (especially as in Anna’s case, when her parents don’t mind her donating a kidney to her ill sister but the physician still asks them to reconsider whether the procedure is actually in her best interests). A complicated situation arises when the parents would just rather that the savior child continue to donate, even if the donation involves invasive surgery, because they are so focused on saving the ill child, and since they are the savior child’s legal consultants regarding medical decisions, the physician must follow through with their decision.

The Utilitarian Viewpoint: The Parents

The next stakeholders are the parents, who see the savior child process as the only option left in order to save their dying one. They represent the utilitarian theory of ethics, which supports the greatest good for the greatest amount of people. This is a sort of vague definition in that it implies that sometimes one or more people may have to incur a loss in order to save a greater number. In this case, as a parent, it is one’s responsibility to look out for the safety and health of each of one’s children. If you need to create one to save another, than the parents probably think that not only will they save their child’s life, but they will also bring another child into the family, whom they can love for doing the one thing no one else can: curing his or her ill sibling. Following this train of thought, the parents might even believe that they are contributing to the promotion of life. When creating their savior child, parents have this in mind and even use it to justify their choice against those who do not believe in children being born to fulfill a purpose. They realize that although most people are against using PGD to create a savior child, and they too possibly would have been only a few years ago, no one can understand what it is like to have a dying child and not being able to do anything at all to save him or her.

When presented with even the slightest opportunity to save one’s child, how could one not take it? This guilt is the driving force behind the parents’ decision to use PGD; they will never be able to live with themselves knowing that they had one chance to save their child and they were too hesitant or scared to take it. And since parents are often more than willing to become donors themselves and not mind changing their way of living through invasive surgeries such as a kidney transplant, they may believe that any existing or new addition to the family is willing to do the same. The best way to summarize the dilemma parents face in creating a savior child through PGD is stated by Sara Fitzgerald (the mother in My Sister’s Keeper). She thinks, “Since when does anyone get the option to do what’s easiest?” (Picoult 32). It also provides a perfect connection to the utilitarian perspective in that the right decision may not always be the easiest one to make because there will be people who are harmed (the savior child) or just not benefited (the “other” child), but it is necessary in order to save a life and seems right at the moment. After all, the parents are certainly not expecting their new child to die through any medical procedure. If going into the process the parents truly believe that the savior child will only have to undergo a few blood transfusions and bone marrow transplants or even just donate umbilical cord blood at birth, they might think that it is worth putting the child through such sacrifices for the greater good of curing the ill child.

Especially when fairness becomes an issue, parental love may have to triumph over the utilitarian perspective even if only because it may eventually exceed certain limits. For example, in the case of an invasive procedure such as a kidney transplant that puts both children at risk, the parents would most definitely say yes if it could potentially cure their child (like Anna’s parents do in My Sister’s Keeper), but the surgery itself may not be in either child’s best interests. Even simple surgeries, such as umbilical cord blood or a bone marrow donation, can be potentially harmful to the ill child but the parents are still willing to take the risk. For example, in The Match, “Whether the transplant was done with the umbilical-cord blood or the baby’s bone marrow, it would be a perilous procedure for Katie” (Whitehouse 16). Stacy, Kate’s mother, wants her to undergo the procedure because she would rather look towards a bright future in which the procedure is successful compared to the dreary present in which she either acts or Kate definitely dies. Bone marrow transplants are also extremely painful for the donors, especially if the donor is a new-born baby. This defies the utilitarian perspective in that the parent is not looking out for the well-being of either child, but rather taking a fatal risk with the hope that there will be a positive outcome. The possibility of ending two lives however goes against the greater good for the greatest amount of people, the general principle of utilitarianism. In terms of fairness, it is the parents’ responsibility to treat each of their children with the same amount of love and attention, despite how difficult it may be. Of course, when one child is constantly going to the hospital and getting closer and closer to dying, parents may, and many would agree that it is understandable, spend less time with their other, healthy children in order to look over and help the ill one. The problem is that most of the time, the parents just aren’t aware that they should show the other children that they care more about them. This is especially difficult in the case of the savior sibling, seeing as that child was born to fulfill a purpose: “Look, Katie, there’s your miracle baby. Say hi. That was made especially for you. With love” (Whitehouse 100). Shortly after Christopher, their last resort, is born, Stacy Trebing speaks these words to her daughter Katie, who is dying of Diamond Blackfan anemia. Her word choice is poor from the start; she uses “that” instead of “he” to refer to her newborn child, who is apparently just a “miracle baby”. This too occurs in My Sister’s Keeper – Anna’s parents give her gifts after she donates to her sister, as if buying her could make up for the fact that she just underwent an unnecessary medical procedure she would otherwise not have had to face. And the third child, who has no direct part in the savior sibling process and often becomes a trouble-maker due to lack of attention at home, feels left out. For example, before the Fitzgeralds have Anna, they take a five year old Jesse into the hospital to donate blood for Kate, and when he starts crying after being pricked by the needle, Sara thinks “I hold him close. I say all the right things. But it is so, so hard to make myself feel sorry for him” (Picoult 65). Although his burden is incomparable to the burden of Kate’s illness, parents should love all of their children equally and sincerely empathize with their pain, instead of giving all of the attention to one and making the others feel neglected (which is of course unintentional but occurs in such a complicated situation).

The utilitarian perspective is one of the most controversial because it deals with justifying difficult choices that may not seem right but can end up being beneficial. Parents have a moral and emotional responsibility to protect their children, especially when faced with the desperate challenge of saving a dying one. “Purchasing” another child as the means to an end may seem like commodification, but when parents make the choice, they are not planning on killing that child, they are just planning on letting the child undergo procedures they view as harmless, so that they will be grateful for having two healthy children instead of an ill, suffering one. However, the parents are neither the only nor the most important stakeholders in this situation, and even though they have good intentions in mind, the situation becomes complicated when the savior and the ill child come into the picture, because they may not necessarily have the same views.

The Deontological Viewpoint: The Savior Child

The savior child is definitely the most complex of the stakeholders. The deontological principle of ethics involves one’s sense of obligation and duty and the actions that one does despite the consequences, either good or bad, that might come out of them. A savior child fits this profile mostly because while the child’s parents still have control over the medical decisions/ procedures the child will undergo, the child is compelled by his or her parents to continue donating to an ill sibling. This happens to both Christopher in The Match and to Anna in My Sister’s Keeper (in her case, it reaches the point where she has to go to the hospital multiple times a month to donate to Kate and her parents even want her to donate a kidney when she’s eleven years old). What’s more, even once the savior child decides that he or she no longer wants to be a donor, the person will either continue to do so out of a feeling of duty and responsibility towards the older sibling, out of guilt for knowing he or she can save his or her sibling’s life and is willingly choosing not to, or simply because the child has never known a different, normal life.

Being a continuous donor without giving any consent infringes greatly on the savior child’s autonomy. Denying the child the right to make medical decisions regarding his/ her own body when they are capable of doing so seems neither fair nor ethical. Children are considered adults and able to make their own decisions regarding medical treatments at age 18. Arguably, savior siblings grow up and mature faster than other children due to their exposure to so many medical procedures so early on in their life. According to Anna, “My parents tried to make things normal, but that’s a relative term. The truth is, I was never really a kid… Nearly every time Kate’s hospitalized, I wind up there too” (Picoult 9-10). This breach of autonomy raises the question of whether and when a savior child should be granted medical emancipation. Whether due to an invasive surgery with potentially life-altering effects or simply because the child no longer wants to be used, the savior child deserves the right to make his/ her own medical choices whenever he or she feels ready, meaning that the child would only continue to donate to the ill sibling if he or she so wishes, not because the parents make it mandatory. Parents should have control over the procedures both of their children undergo until the age, most likely before becoming a teenager (twelve to thirteen years old), when the savior child can speak out for him or herself, make his / her own informed and well-thought out choices, or is about to undergo a life-threatening or life-altering surgical procedure. This would make them able to decide whether to offer their own body parts, not have someone else (especially a parent who is doing everything to save the other sibling) choose for them.

The Kantian imperative goes hand in hand with the deontological perspective and states that a child is not the means to an end but rather the end itself. His principle is to “Act in such a way that you treat humanity, whether in your person, in the person of any other, and always at the same time as an end and never merely as a means” (European Journal of Health and Law). Although the parents have the best of intentions in mind when creating their savior child, they are thinking primarily about the ill child and not about how the new one will fit into a family that has given it a role to fulfill. This child is born with the title of hero, given a purpose he or she is expected to complete without even knowing it or choosing to be able to do so. But what if the child is not able to achieve the parents’ goals and cannot cure the ill child? Will the parents regard that child as incompetent, or a disappointment, even though he or she is just as much their child as the ill one? The savior child might feel that the answer to this question is yes, and because of that become dedicated to saving the ill sibling out of fear of upsetting his or her parents or of being a failure his or herself. Even worse to know is that had the person’s sibling not become ill, this child might not even exist.

Another ethical issue related to the unnecessary medical procedures the savior child undergoes is commodification. Do the parents assume that because they would willingly donate their blood and even organs mean that the savior child is willing to do the same, without even having a say in the matter? Most often, they might not even think about it, and may just start using the child from birth. The parents will, of course, care for the child, but they will also always view it as a “bank of spare parts,” ready to be delved into when the ill child needs a new treatment, piece of body tissue, or surgical transplantation. This does make the new child, despite the parent’s claims otherwise, a commodity. And once the child becomes old enough to realize why he or she takes so many coincidental trips to the hospital along with his or her sibling, the child’s emotions will become severely tampered with. The child might feel that she is not given the same love as the ill child and that her parents did not care as much about her as they did about their first, natural children. In one scene in My Sister’s Keeper, when walking through the maternity ward, Anna thinks “Did my parents do this when I came along? Did my father send out smoke signals… Did my mother kiss the top of my head… Or did they simply hand me away, since the real prize had been clamped between my belly and the placenta?” (Picoult 52). Immediately at a young age Anna begins to have doubts about whether her parents truly loved her or if they just needed her for her tissues and organs from the start, which is a somewhat traumatizing realization for a young child to come to. She also outright tells her parents “I’m sick of being a guinea pig. I’m sick of nobody asking me how I feel about all of this. I’m sick, but I’m never fucking sick enough for this family” (Picoult 218). The pressures of having to report to the hospital as soon as something happens to someone else and of never getting the love you feel you deserve from it, and of simply being your parents’ child, can become extremely frustrating.

It is never easy for a child to suddenly be able to speak out against everything he or she has learned and experienced growing up, especially when doing so involves questioning one’s parents, who are always supposed to know best. Growing up in a household where the dominant figures (parents) set the rules and have answers to all of the questions naturally means that they are always making the right choices. As one gets older, however, one begins to realize that parents do not always have the answers and that they make as many mistakes as everyone else, potentially even in creating the savior child in the first place. This means that if the child is uncomfortable with the medical decisions the parents make for him/ her, the savior child should be granted medical emancipation. The savior sibling knows when he or she is ready to start making autonomous medical decisions, especially if the moment of realization occurs after finding out that an invasive surgery such as a kidney transplant will take place. The matter needs to be discussed with the parents, and there should be a law which gives the savior child a right to withdraw from medical procedures involving donation before the age of 18 if that is what the individual so wishes and he or she feels prepared to make an informed decision.

The Ontological Viewpoint: The Ill Child

The next stakeholder is the one who truly, innocently, and unknowingly began the entire process: the ill child. The ontological perspective can relate to both the savior sibling and the ill child, but it pertains most to the ill child because it is “the study of being”. This child is being kept alive by a very close family member born with that purpose, and the child may believe that it is not right to turn the savior sibling into a commodity just for his/ her sake. This child, like Kate in My Sister’s Keeper, may also see the damage her disease is causing and how it is tearing apart her family and feel guilty for being the cause of it. And then there is always that simple question lurking behind the disease, waiting for it to be defeated until it can emerge. How does one ever pay back the gift of life? Naturally, the bond between the savior and ill siblings is much stronger than that of a normal sibling relationship, and the ill child will always feel indebted to the savior child for all of the sacrifices he or she has made for him or her. This guilt and obligation towards the savior sibling is something that this child will probably always feel. After all, the ill child does not want to ruin the savior child’s life or take away any of their parents’ attention from the savior child. In fact, the ill child may even get sick of it. Kate certainly does, and goes as far as to blame herself and her leukemia for tearing her family apart and for making her siblings so seemingly neglected and unhappy.

Something strange and uncommon – but nonetheless possible – that may occur is the ill child wanting to refuse treatment, like Kate. This brings the ill child’s autonomy into question, but in a completely different light from that of the savior child. If the savior wants to refuse treatment, it is because he or she is not benefitting from it and wants control of his or her own body. If the ill child no longer wants to undergo procedures, however, whether due to feeling weak, guilty of ruining the family, or just tired of treatments that never provide a cure, should the child be allowed to do so? In it almost impossible to describe the strength of the bond between two siblings who have grown so close to each other, with one literally being part of the other. Therefore, the ill child may feel so guilty or even indebted to the savior child and may want his or her suffering through unnecessary medical procedures to end. The ill child may view him or herself as the cause of the savior child’s unhappiness with his or her role in life (an unhappiness which may actually come just from not being allowed a say in the medical decisions being made for him or her). This may prompt the ill child to want to end treatment out of an altruistic desire to “pay back” the savior child by allowing him or her to live a normal life without worrying about more blood transfusions, bone marrow transplants, and/ or other medical procedures as an act of kindness and love.

Cessation of treatment prompted by the ill child’s own will, whether because feeling weak or just no wanting to undergo more medical procedures that he or she may deem useless, however, places every stakeholder, meaning the physician, parents, savior sibling, and the other sibling in a difficult situation because it brings up the issue of euthanasia. By allowing the child to refuse treatment the doctor would in effect be saying that the child will die soon of natural causes. Apart from its being illegal across the majority of the United States, physicians are also responsible for preserving and saving their patients’ lives, which is why they even suggest savior siblings at all. Life is also viewed by society (and in this case, especially by the ill child’s parents and physician) as a precious gift that needs to be preserved, so allowing an ill child to take it away does not seem ethical. It is one thing for the savior child to refuse treatment, seeing as he or she does not need it and wants the right to have autonomy and control of his or her own body (especially since the child is not benefitting from the operation). However, it is different when an ill child wants to refuse treatment, because the opposite would actually be conducted with the intention of saving the child, making it seem like the ill child is refusing life. Therefore, the ill child should not be allowed to refuse treatment (if the savior child is willing to provide it) unless the treatment is fatal, because he/ she will benefit from it. When faced with a difficult and potentially fatal procedure, such as a kidney transplant which the child is too weak to undergo, then comes the exception when the ill child should have a say in whether to terminate treatment or not.

The “Other” Child

The last stakeholder is the problem, or “other” child who was most likely born before the ill child and is not an exact tissue match, meaning that he cannot take part in any of the medical procedures. This usually makes him the outsider, the one whose parents do not think about as often as the others, and sometimes even neglect, simply because he is not as involved in his ill siblings’ life. Although the other child is actually in a better place than the savior child, since he has autonomy and does not have to participate in unnecessary trips to the hospital, he probably feels even worse, since he is alone while the rest of his family revolves around the disease killing one of them. Due to the lack of attention at home, this child usually acts out in public places such as school just to get the attention he craves. To show an extreme example, Jesse in My Sister’s Keeper becomes a pyromaniac, periodically setting old, abandoned buildings on fire, because of the neglect his parents had shown him while growing up (due to taking care of Kate). He claims that “I look for places like me: big, hollow, forgotten by most everyone” (Picoult 95). At least when Bryan, his father (and ironically a firefighter) finds out he comes to the realization that Jesse is not the only one to blame. “And do you blame him, or do you blame the folks who should have told him otherwise?” (Picoult 331). Here he refers to himself and Sara, and even though many people would not go to such lengths to feel appreciated or potent, Jesse’s behavior is an excellent example of the emotional and psychological effects that not being a direct part of a savior sibling process might have. In The Match, the Trebings’ oldest son too becomes a trouble-maker for the same reason.

What Are We Left With?

            Any savior sibling case generates a complicated ethical dilemma in terms of the stakeholders and issues such as autonomy, commodification, and fairness. What helps make such cases unique is that no one person is completely in the right or wrong. The parents are justified in loving their dying child enough to go to desperate and often unthinkable (unless someone such as the child’s physician states it) lengths to save him or her. What parents wouldn’t give even their own life to see their child healthy, happy, and well? It is only natural that in paying so much attention to the ill child, who they view as needing them the most, they will end up not spending as much time with the others, who also need them for family stability while growing up (especially the “other” child, who is not a direct part of the savior sibling process), as they should. The savior child, as a normal human being born into the world with the same rights to autonomy as any other being, ends up being treated like a reusable commodity, even though that is not the parents’ intention at all. It is also unfair to put the blame on the ill child, because that child neither chose to become ill nor asked for a savior sibling to be created. Quite the opposite, the ill child may even have preferred that nature had taken its course and that the new child had a normal life (not the purpose of saving him or her) because he or she might believe that that would make their family happier and him or her less of a burden. All of the stakeholders deserve to get what they possibly most want: the ill and savior children’s physician, the chance to perform his responsibilities and keep both of his patients alive and well; the parents, a healthy child; the savior child, emancipation and autonomy to make his or her own choices regarding medical procedures; the ill child, the chance to get better without having to constantly undergo medical procedures and drag the savior sibling into them as well; and the “other” child, the attention that he or she craves from his or her parents.

Alternative Procedures/ Solutions

The best way to avoid the ethical dilemmas, emotional turmoil, and stress that comes from using pre-implantation genetic diagnosis to generate a savior sibling is to create an alternative procedure, one that does not pose the threat of compromising basic human values. After all, the savior sibling concept is open to dangerous escalation such as the savior needing to give up an organ such as a kidney, or even a heart, which would result in death? What ethical choices will then guide the parents’ decision? Some proposed solutions include setting up umbilical cord blood banks, in which a child’s umbilical cord blood, which can cure many obtained illnesses, would be stored and preserved in case it was ever needed. Instead of having to create a child just to obtain similar blood and tissues, physicians and other hospital staff could begin recommending that parents save their children’s umbilical cord blood from the moment the children are born. Even if an exact tissue match is produced through the savior sibling, that blood is still never as precise or effective to treat an illness as that of the sick child’s own. Recent studies and observations by physicians, such as those mentioned on the Cord Blood Registry website, have shown that stem-cell transplants from umbilical cord blood are effective ways of treating and potentially even curing an ill child. Therefore, more attention should be turned to them and away from the creation of savior siblings. A much simpler process in itself, storing umbilical cord blood may help save someone’s life in the future and keep another person from having to suffer through various unnecessary medical procedures and constantly question his or her role in the family or purpose in life (since the savior child, when viewed through a certain lens, practically lives for and because of his or her sibling).

If the savior sibling does want medical emancipation but is too scared to speak about it in front of his or her parents and physician, they should have resources such as social workers available to them so that they can sit down together, discuss what is going on, and come to a conclusion in terms of autonomy and emancipation. Naturally, a young child who fully trusts his or her parents does not feel comfortable when doubt about their choices being in his or her best interests settles in. After all, who is the child to question the grown-ups? The savior child might also be afraid of his or her parents’ reaction to wanting to stop participating in the donation process, since they would think that he or she would be taking away their only hope of saving the ill child. Another possibility includes the savior child feeling obliged to perform his or her responsibility to the family and to be the hero; if he or she was created with a purpose that no one else could fulfill, he or she must. The physician, seeing as he or she was the one who ordered the creation of the savior child and the medical treatments to be performed on him or her, will also most likely side against the savior child in order to save the ill child, unless the savior child provides compelling reasons and evidence as to why he or she deserves medical autonomy. This is why a potential third party should be included in such discussions, so as to keep the savior child’s best interests in mind rather than only those of the ill child.

 Next Steps

It is true that people can protest against creating a savior sibling, but only when put into the parent’s shoes can they understand how difficult it is to watch a child – their child – die and not do anything about it.  As gathered from each of the stakeholders and the three ethical lenses used to analyze them, the question of allowing a savior child to gain medical emancipation and autonomy in making personal medical decisions has now become a question of when. The truth is, no one is ever prepared for a situation as complicated as this. No one is ever expecting their child to be perfectly healthy one day and develop a life-threatening illness the next. And the parents and physician are not to blame completely for creating the savior sibling; they just want the person they have grown to love to live. The situation becomes unfortunate because the savior sibling is a person, with his or her own emotions, thoughts, feelings, and life, not just a bank of spare parts or a commodity you can purchase. Jesse puts it simply: when Anna says she wants to stop being a donor, he argues “Don’t mess with the system, Anna… Kate plays the Martyr. I’m the Lost Cause. And you, you’re the Peacekeeper” (Picoult 15). They each have their roles, and once the savior child is created, the system is now controlled by their parents as if the whole situation were a game with the children being the pieces and the parents having to learn how to play it right. But maybe the best way to win would be to let their children make their own moves. This is why, until alternatives to creating savior siblings exist, the savior child should be granted medical emancipation at the age where he or she feels ready to accept the benefits and consequences that come with the decision or if a life-threatening/ altering procedure is about to take place. The child can then work out how to move on from that point in terms of continuing donations out of an altruistic bond with the ill child or in participating in only those procedures which he or she so desires to.

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Mariana Do Carmo is a senior at Kent Place School. She joined the The Bioethics Project 2012: The Medically Modified Human out of a desire to learn more about ethics and to apply this knowledge to her every day choices. Something that kept her thinking after each discussion was the role of ethics in family relationships, leading her to choose pre-implantation genetic diagnosis and the creation of savior siblings as her research topic. Her favorite subjects so far have been biology and anatomy and physiology, and she hopes to study medicine and use her new understanding of biomedical ethics to one day become a successful physician.

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