Who Really Needs Saving? The Ethics of Savior Siblings and Their Autonomy

What decisions do we have the authority to make that will have an affect on others? How can we weigh the benefits and the consequences? What happens if we make the wrong decision? These are the types of questions that parents face when deciding how to treat their child that has a life threatening disease. With the emergence of a new technology known as savior siblings, parents are able to conceive a child that will be a perfect fit to cure their other sick child. Although the technology necessary to create savior siblings raises many ethical concerns. Could this be interpreted as giving a child a purpose to serve as a treatment for their sibling? What would happen if the savior sibling decided that he or she no longer wanted to treat their sibling? This raises the ethical dilemma surrounding a child’s autonomy in the medical field; a crucial consideration to the concept of savior siblings. This paper will explore the major ethical concerns that arise surrounding the topic of savior siblings specifically focusing on the values of nonmaleficence, parental duty, and autonomy.

 


 

INTRODUCTION

Imagine that you and your partner are sitting at the doctor’s office hearing that neither of you are a blood donor match to cure your only child who is diagnosed with Fanconi Anemia; a potential life threatening disease.  You wonder what will happen to your child and how much longer he or she will live. You have already asked your friends and relatives for help, but they either declined your proposal or were not matched to be donors for your child.  The doctor mentions something called “savior siblings.” You and your partner look at each other confused.  He begins describing the process: first comes in vitro fertilization (IVF), and preimplantation genetic diagnosis (PGD)… and then, you and your partner can conceive a child that will be able to help treat your sick child.  You and your partner are stuck between deciding whether or not this is ethical. You are considering the fairness to the children and the possible future ethical issues such as psychological harms, fairness, and nonmaleficence.  After you have thought this through you do not know what the next step should be. Should you have another child that will cure your sick child, but with the risk of future consequences? Or, is this deemed unethical, implying that you should not create a savior sibling, but rather continue to explore other treatment options?

With the rapid improvement of modern technology, more treatment options are being uncovered in the medical field every day, especially pertaining to reproductive medicine. With more and more ways to genetically modify a child’s genome, an infinite number of possibilities are being unleashed. But, just because we can do something should we? If you could use modern technology to save another child, would you? Should you? Most parents’ immediate reaction would be to say “yes”, because they want the best for their children. But what if to cure your current sick child, you had to create another child to be a donor? While technologies like PGD and IVF can lead to many great outcomes, they could also raise concern in terms of implications for the future donor’s life. What would be their purpose as they act as a “treatment” for someone else and how would they feel to be used in this way? You, a parent, would have to consider whether this treatment option would be the best decision for your family, and with your current, and potential future child’s interests in mind. With new technologies arising, parents facing tough ethical dilemmas must consider the potential consequences regarding their use, including whether or not they would serve as a benefit or a harm to their current situation.

This paper will examine the process of PGD and IVF and see how they are related to the creation of a savior sibling. The concerns regarding the creation of savior siblings are a pressing issue relevant to this time period. There is continued controversy over whether parents should have the right to conceive a child, with the intention of that child assisting the treatment of another sick child.

When looking at savior siblings, many issues related to values emerge, which I will focus on in my paper. The values I will address are autonomy, parental duty, and nonmaleficence. In terms of autonomy, many questions and concerns arise regarding the savior sibling. Who has the right to make a decision regarding a child’s purpose in life, and are parents allowed to make this decision? Should there be restrictions made on the usage of savior siblings in order to ensure they are not abused? Some treatment processes inflict more harm than others, so it is important for one to consider how the need for a savior sibling would be determined relative to the pain that the savior sibling would have to endure.

Another value being addressed is nonmaleficence which includes parental duty and potential psychological issues. The overarching question here is whether the benefit to the sick child of having a savior sibling outweighs the harm being inflicted upon the savior sibling. As mentioned before, depending on what the sick child needs treatment for, there is a large scale of potential harm that could arise from the perspective of the savior sibling. Parents have the duty to not inflict harm upon their children and to ensure that their life is fair, but how can a parent uphold this duty when their child is a savior sibling? In the future, there are many potential issues that could arise, including that the savior sibling may feel neglected from his or her family, or alternatively that they may feel a sense of pride for their accomplishments in helping heal their sick sibling. Since there may be both a good and a bad potential outcome to the scenario, it is hard to make a decision that could potentially ruin one child’s life, but save another’s.

This paper will address whether creating a savior sibling is ethical and the questions that arise around it. The creation of savior siblings is a prominent issue as our technology becomes more advanced, allowing us to do more in this domain. The concerns and factors that play into the decision making process and ethics of this dilemma will be discussed at large. The main ethical values I will consider are nonmaleficence, parental duty, and autonomy. For the sake of this paper, I will be arguing against the idea of conceiving a savior sibling, but will show both sides to the arguments.

Factual Information

A savior sibling is “a child conceived through selective in vitro fertilization to be a possible source of donor organs or cells for an existing brother or sister with a life threatening medical condition” (English Oxford Dictionary). Once they are born, they may have many different purposes related to helping cure or treat their sibling’s disease.

Savior siblings are born to provide their brother or sister with an organ or cell transplant if they are affected with a otherwise likely fatal disease such as cancer, fanconi anemia and many more. Since there are so many diseases that can be treated, there is also a wide degree of the harm that can be inflicted upon the savior sibling in attempts to save the lives of their sick siblings. For example, Fanconi Anemia is an inherited disease that mainly affects the blood marrow and causes a person to have a decreased amount of all blood cells. This disease is caused by a mutation of an abnormal gene that damages cells, so those that suffer from this disease can’t repair damaged DNA. To treat this disease a savior sibling would have to donate their bone marrow; a very painful process. On the opposite end of the spectrum, a savior sibling may be considered a one time use that does not include severe pain. One example may be when a sick child needs the cord blood of a sibling in order to treat his or her disease. For this, the umbilical cord of the savior sibling is easily saved during the birth process, used only once, and after that there are no further treatments. This makes a cord blood donation a treatment that will inflict little to no harm upon the savior sibling. This wide spectrum of potential uses of savior siblings creates a lot of controversy about whether a savior sibling is not only ethical in general, but also particularly when the creation of a savior sibling is ethical in different scenarios with different degree of harm.

How Savior Siblings are Created?

When creating a savior sibling, the first step is to use the process called IVF (in vitro fertilization). The process of IVF occurs in a petri dish in a lab. The goal is to create embryos that will be a blood, organ and/or tissue match to the sick child in need of treatment.  First, sperm is combined with eggs so that they can fertilize creating an embryo. The embryos are produced and are grown for about 2-5 days in a lab until the “best” one is chosen to be implanted. In general, the best one is usually the largest, most proportional, has the most cells, etc.  In terms of savior siblings, the embryo that the doctors are looking for is the one that matches the savior sibling in terms of its blood type, tissue type, etc. In order for the doctors to look for the “best” embryo, a process known as PGD (preimplantation genetic diagnosis) is used to screen the embryos and determine whether they are a match or not. This is not however the only option. Sometimes people may use donors for one component such as a kidney that can help cure the savior sibling. If the parents’ sick child was not biologically related to them, then the parents may decide to find the child’s biological parents or other close relatives to see if they would be a potential match. Although these are some alternatives, savior siblings are generally created through IVF and PGD to ensure the savior sibling will be very close genetic match to the sick child.

Preimplantation genetic diagnosis (PGD) in general is a screening process that is used to prevent inherited disorders. In terms of savior siblings, the goal is to select an embryo that will be able to serve as a donor for whatever the sick child needs. In general, PGD has many uses. It can screen for diseases and mutations to prevent them from being inherited. It can also screen for certain physical characteristics so that parents can “design” their own baby. In terms of savior siblings, PGD can screen for HLA typing (bone marrow or cord blood) to match the savior siblings blood to the sick child. The screening occurs at about day three of the embryo’s life, when a doctor inserts a pipette to remove one of the cells. That cell is then screened to determine if there are any genetic disorders that will appear once this embryo develops, and also to find the embryo that will be the best match to the sick child. PGD can also be used to find out whether or not that embryo will create a savior sibling that is a blood, organ, and/or tissue match the embryo is intended to cure.

In and of itself, the topics of PGD and IVF raise many ethical concerns. If families decide to screen their future child’s genome and then use IVF to edit their child’s genome to eliminate diseases that will be inherited, what will be the consequences? If all genetically inherited diseases eventually no longer exist, does that mean that more diseases like this will arise? By using PGD the human species or specific populations could become at risk. Genetically homogeneous species are risky because if one disease can kill one person and everyone is screened for this disease so that it can be taken away using PGD, then it could kill a huge population.

PGD also raises questions about access. What happens if a family can not afford to edit their future child’s genome? Will this technology therefore only be in the hands of few who are wealthy enough? Overall, PGD raises so many more issues than those listed above, including many future consequences that could arise due to the concept of editing one’s genome. For this paper, I will not focus on whether PGD is ethical or not, but rather the ethics regarding its usage for the purpose of savior siblings.

Creation of the First Savior Sibling

Adam Nash was the first savior sibling ever to be born on August 29, 2000 through the processes of PGD and IVF. Adam’s sister Molly was diagnosed with Fanconi Anemia, which meant that she would need cord blood donations in order to have a chance of survival. The family struggled to find a match to cure Molly and once they heard of the concept of a savior sibling, they decided to go through with it. The idea of savior siblings raised criticism at the time, including the concern for the savior sibling and the technology that was being used. After Adam’s birth, savior siblings became a technique that was viewed as having the ability to save many lives, but at the same time raised many ethical concerns.

As soon as Adam’s birth and the related circumstances were released to the public, people were astonished and angry. The first accusation was that the Nash’s parents and doctors were “playing God.” Over time, this critique has subsided as more awareness about the long term effects of this procedure has developed.

Since this case occurred a long time ago, people have shared news about the effects of the savior sibling on the Nash’s family. Molly was upset that her younger brother had to donate his umbilical cord to save her. She was angry at her parents, but her parents “knew what was at stake” (Star Tribune). John and Lisa (parents of Molly and Adam) believed that “they were offered a long-shot chance to save the life of their daughter and to have more children that did not have the fatal disease they both carry in their genes” (Star Tribune). The parents believed this to be the best option, as they were able to cure one child and therefore grant that child a life and also bring a new life into their family. Without Adam, Molly would probably have not survived.

Nowadays, savior siblings are being used for more painful and potentially harmful treatments. For example, instead of a cord blood donation, savior siblings are being required to go through more painful treatments that could potentially have many more serious consequences in the future, including psychological harm, or a sense of neglect from their family. As this technology becomes more prominent, it is important for a parent to consider not only the impact this savior sibling will have on their family, but also how this process may harm or benefit the savior sibling’s life.

The concept of savior siblings has also captured public attraction through several books and movies such as My Sister’s Keeper by Jodi Picoult. Although, beyond a few of the most noteworthy cases of savior siblings, very few instances have been reported publicly. As these technologies and gene editing become more advanced in creating embryos and prenatal care, it will create a higher possibility for the use of savior siblings to gain more traction, possibly leading to future consequences.

AUTONOMY

Everyone likes to be able to speak for themselves and make decisions for themselves. In the medical field, patients have the right to make decisions regarding their treatment options; some of which can be life threatening. In our current healthcare system, parents have the right to make medical decisions for their children. Parents generally have their children’s best interests at heart, meaning that they are not usually making decisions that could jeopardize their future. In terms of savior siblings, it is important to consider which child’s interests are prioritized. Although, sometimes patients who are under the legal age may have differing beliefs than their parents. Then the question arises about whether parents’ decisions that go against their child’s will be considered to be threatening their autonomy.

Concerns Regarding the Savior Sibling

In terms of savior siblings, the value of autonomy becomes an ethical dilemma as parents are forced to consider their motives for having a child and whether or not what they are doing is considered to violating a future child’s autonomy. Parents must consider whether this decision is theirs to make. This means that families must consider the potential child’s (savior sibling) autonomy before making decisions that could have a huge impact on their life in the future. In general, this relates to medical decision making in relation to children. This is a hard concept to grasp as many would say that young children lack the intellectual capacity to make life changing decisions. But doesn’t this assumption seem like we are taking away the child’s autonomy? The definition of autonomy states that all should have “freedom from external control or influence”, but how does one decide when parents should have the final decision over their child? The idea of autonomy in the medical field is something many ethicists struggle to grasp, i.e., as to where the line should be drawn between who has the ultimate say in relation to medical conflicts.

The savior sibling’s autonomy is being threatened before they are even born. Even though this is not the case for all children, the topic of savior siblings presents an ethical dilemma because parents are determining the child’s purpose and the duty for them to fulfil once they are born. The child will be obligated to serve the needs of his or her sibling even if they do not want to. This is the first ethical dilemma that occurs, because at first, the idea of savior siblings could seem similar to a normal birth. The birth of a savior sibling is however different to a normal birth because the savior sibling has a purpose when he or she enters the world. In terms of a normal birth, parents will guide their child’s life, but will avoid at all costs bringing harm to them. In terms of savior siblings, harm is almost always a factor that is involved in the process, or for the most part, prescribing their choices and actions. What makes the topic of savior siblings different is that the child’s future (at least for a period of time) has been planned out for them, and the child has no say in the matter. This is different to parents deciding they want their kids to become a doctor or a soccer player, because in these circumstances, physical harm is not inflicted upon the child. In terms of savior siblings, a parents is choosing a future potentially encompassing a large amount of harm that will not even serve as a benefit to the savior sibling.

In the future, many ethical questions arise such as whether the savior sibling has the right to decide if he or she wants to keep on helping the other sick child. What happens if the savior sibling decides that they do not want to treat their sibling anymore? Technically, it is their autonomous right to deny serving as a donor, so ethically, wouldn’t it be wrong for a parent to refuse their desire to exercise this right? Since savior siblings are born to serve as a “medicine” for someone, they may feel like their sense of autonomy is being taken away. Instead of living a somewhat “normal life” a child would potentially be forced to spend a lot of time in a hospital, and/or undergo risky medical procedures. The savior sibling may feel pressured into saving the family, which could put another burden on their decision making process, especially if they have any feelings that go against being a donor. So, does creating a savior sibling violate the autonomy of the savior sibling?

Those against savior siblings could argue that creating a savior sibling is unethical because the parent takes away the child’s autonomy by forcing them to serve as treatment for someone else. This presents the “future autonomy” issue which refers to the rights of the individual in the future when he or she is treating his or her sibling. One scholar said We realise that it’s done with the best of intentions, but at the end of the day you’re cannibalising a little human person who has no say in the matter. I’m afraid I have to object to that” – (Bernard Moran, Lifesitenews). This quote illustrates how the child’s autonomy is being taken away in circumstances when the child does not have a say in what they are being told and/or asked to do. Once savior siblings reach an age where they are capable of understanding their purpose, they may decide that they do not want to continue their blood donations, bone marrow transplants, etc.

This situation can be compared to restrictions on typical blood donations. The weight restriction on people that can donate blood is very important because of considerations relevant to the health and well being of the patient. If the person is underweight, losing that much blood could negatively impact their health. Restrictions placed on people who want to donate blood can be compared to restrictions on the savior sibling’s point of view. In terms of savior siblings, age is an important factor that doctors and people use to classify one’s capacity to understand the consequences of their decisions. This is similar to typical blood donations because there are a restricted numbers of donors that can donate. This means that even if one wants to donate but the donor is under the weight limit, their autonomy is being taken away based on the laws and regulations set because legally, they can not donate. Overall, typical blood donations can be compared to donations a savior sibling has to make because in both situations, the patient’s point of view is compromised based on a factor of weight or age; in other words they do not have a say in these situations, so their autonomy is being compromised.

Those for savior siblings would argue that the parents have the savior sibling’s best interests at heart. Even though he or she does not have much of a say in their purpose, the parent’s are trying to create a “happy medium” where both children are happy and healthy, and thus, their autonomy is protected by their parents attention to their interests. Parents act with their child’s best interests at heart meaning that the savior sibling’s autonomy is preserved. Therefore, one could argue parents do have the right to this decision when they have the savior sibling’s best interests at heart.

Not only are the concerns regarding the savior sibling important, but the concerns of the sick child are as well. It is important to look at and consider how the sick child will react to his or her sibling serving as a treatment for them, and also how the family dynamic will be affected as a whole.

Concerns Regarding the Parents

When parents create a savior sibling to cure their sick child, they could be considered to be taking away both of the children’s autonomy as neither children have a say in the decision being made. Do the parents have the right to conceive a savior sibling without consent from their ill child or does this violate the value of autonomy? If they do, are there any restrictions or exceptions that should be considered (such as age, mental state, etc.)? When are the parents obligated to give their children the right to make these decisions, or are they ever allowed to do so? Who will be prioritized when a parent makes these decisions; the sick child or the future savior sibling? Will bias be present? If so, how can the parents prevent this? All of these questions make parents really think carefully about the decisions they are making. Since the children do have the right to make decisions for themselves at some point, should this give them the right to override what their parents want, and if so when?

Those against savior siblings could argue that the parents do not have the right to make these decisions for their children because doing so violates their autonomy. The sick child and the unborn savior sibling do not have a say in either their treatment or in terms of the savior sibling, their purpose in this world. Therefore, one could argue that the autonomy of both the sick child and the savior sibling are being violated by the decisions the parents think they have the power to make.

Those in favor of savior siblings could argue that the parents have the autonomy to have a child however they choose and for whatever purpose. One could argue the parents have the right to decide how they want to care for the sick child and this right refers to the autonomy of the parents to make decisions about how the sick child might be cured. Since the children are underage, they lack the ability to make legal decisions for themselves, therefore putting them in the hands of their parents may be considered ethical, but should the child’s opinions also be respected?

In conclusion, based on the sole value of autonomy, the side in favor of savior siblings may appear to have a stronger argument; that is, giving the parents the right and freedom to choose how they want to handle the situation of curing their sick child because the parents could override the child’s wishes if they are under legal age to make decisions for themselves. It is hard to argue that a parent should not be able to make decisions for themselves, because this would be violating their autonomy. Even though for this value, one side is stronger, many more values are apparent in this scenario and have stronger arguments that go against the concept of savior sibling. I will be addressing these in my paper. One thing that could change the arguments in terms of autonomy is however, whether the child is 18 or over. Reaching the age of 18 would give savior siblings a legal right to “govern” themselves. Throughout the rest of my paper, I will further discuss the other values at stake and reveal stronger arguments that are contrary to the use of savior siblings.

NONMALEFICENCE OR “DO NO HARM”

The value of nonmaleficence is very important in terms of savior siblings and in day-to-day life. In general, most people consider nonmaleficence as a moral value because you should not inflict harm upon others. Although this value may seem very simple at first, depending on the context of the situation, this value can become the source of very challenging ethical questions. Savior siblings are an example of how the value of nonmaleficence may or may no longer be considered a right vs. wrong situation, but rather an issue regarding ethics.

When considering to create a savior sibling, one must consider whether the harm being done to the savior sibling will justify the benefit that the sick child will receive. Since there are many different types of savior siblings, the degree of harm varies. For example, if the sick child needs cord blood, the savior sibling would just need to give up their umbilical cord once they are born. This would result in a lack of harm compared to a situation when a sick child is needed for example for a bone marrow transplant. Bone marrow transplants are very painful, and generally they do not stop at just one treatment meaning they have a lot more potential health risks attached to them. This would cause the savior sibling to undergo longer term suffering  compared to if they were just donating cord blood which would most likely result in no consequences.

A parent must consider whether or not the harm to the savior sibling exceeds the benefit, and if it does, is having a savior sibling really ethical? When considering this, it is important to look at both the savior sibling’s perspective and the child who is sick. The child who is sick will continue to suffer if no treatment is given to them. The savior sibling is born healthy, but subject to possibly having to spend so much of their childhood in a hospital. Is this ethical? Another consideration is, if the treatments are too harsh, whether the harm or pain and suffering being inflicted upon the savior sibling could exceed the benefits to the sick child. If both children are suffering harm, then does it make sense for the savior sibling to be going through this harm if it isn’t helping the sick child to an extent that would warrant the pain or risks involved?

Those against savior siblings would argue the pain to the savior sibling is too much because he or she is undergoing hospital treatment which negatively affects his or her health when they were born and are otherwise, healthy. The harm to the savior sibling lessens their quality of life, as they can not live a “normal life.” One may question if it is really fair for the savior sibling to go through this pain as it is lessening their quality of life, including having to  spend much or majority of their childhood in a hospital.

People that do support savior siblings would argue that the harm to the savior sibling will drastically change the life of the sick child, and therefore, in all cases, the benefit does outweigh the harm.  One quote by a savior sibling named Jamie was “I know I was born to do that instead of being just born for me. It makes me feel closer to Charlie” (Daily Mail). This is an example of how a savior sibling benefited the family. The harm to Jamie was little to nonexistent because all he had to donate was his umbilical cord. The reaction of the savior sibling could change depending on the amount of pain the savior sibling is going through. Therefore, one would argue that there will be harm to both children, but the harm to the children will reach a “happy medium” meaning the harm to the sick child will be a lot less because the savior sibling will share that pain.  By making both children endure some pain, the pain to the sick child becomes decreasingly less. Therefore the littlest harm is being done because the savior sibling is taking some of the pain away from the sick child.

In my opinion, although savior siblings can be used to limit harm to the sick child, more harm is ultimately being done to someone else (the savior sibling). It is not fair for a healthy child to be forced to treat another sick child without the healthy child’s consent. Depending on how sick the child is that the savior sibling is curing, more harm could be inflicted upon the savior sibling, when the sick child may not ultimately be cured. This goes against the concept of nonmaleficence because now the savior sibling is going through more pain that does not outweigh the benefit. In terms of nonmaleficence, savior siblings should not be deemed ethical because instead of balancing harm, more pain is being placed onto someone who was born healthy but is now living the life of a chronically ill person.

HARMS AND PSYCHOLOGICAL EFFECTS

In most cases of savior siblings, harm is being inflicted upon the savior sibling for the benefit of the sick child. Depending on what sickness or condition the savior sibling is being used to cure, the treatment process could be lengthy and painful. One must consider whether it is ethical or not to potentially put an otherwise healthy child through this much pain for the medical benefit of the sick child and the emotional benefit of the parents.

In terms of savior siblings, bias could be present in terms of how the parents treat each of the children. Would the parents tend to view the child as a medical device that makes the sick child better? Usually, parents with sick children focus more of their attention on that one child, which sometimes can make their other child(ren) feel neglected. In terms of savior siblings if this were to happen, it would be worse than usual cases as the savior sibling is enduring a lot of pain as well to serve as a treatment. The savior sibling is not only undergoing physical pain, but emotional pain and suffering as well. The savior sibling may begin to question his or her existence and his or her purpose in life. Instead of having a feeling of neglect, would the savior sibling feel as though he or she was being treated better than the other children because the parents are so grateful for them? The savior sibling could also have a sense of pride for what they have been able to accomplish for a family member. This may enhance the savior siblings quality of life, while at the same time improves another life. These possible effects follow the idea of nonmaleficence regarding parents to keep their children safe and provide them with the best life possible that does not include harm. Parental duty would mean that this bias should not be present because the parents have a duty to treat their children equally.

Some things to consider are whether or not there be an age requirement before a savior sibling is conceived, such that the child who is sick has a say in the decision? What if that would be too long to wait and the sick child might die in the meantime, or would suffer terribly? Would the technology then be deemed ethical to follow through with, or should it not be used at all?

Those against savior siblings would argue that savior siblings would develop psychological issues because they would feel like they were being treated differently. Savior siblings may for example feel like their only purpose in this world would be to serve as medicine or treatment for their sick sibling. They would feel like they were being treated as a commodity, meaning their thoughts and ideas would be less valued towards the parents.  Due to these devaluing thoughts towards the savior sibling, the parents would show bias in their emotions towards each child. The savior sibling would be less valued because they are being looked at as an object with their only significance or purpose being to cure the other child. The savior sibling may develop feelings that he or she did not belong in the family since he or she is only serving as a treatment or medicine for a sick sibling. Long term, the savior sibling may struggle emotionally to exist in a world where his or her sibling is always perceived to be more important and more valued than themselves. Therefore, one could argue that savior siblings are not ethical due to psychological concerns.

Those in favor of savior siblings could however argue that the child will not have an emotional struggle, but instead have a sense of pride that he or she was able to save someone’s life by simply existing and giving his or her sibling what they need to survive. The child may take pride that he or she was able to treat someone when no cures could be found otherwise. He or she will not only make the sick child happier and stronger, but the parents as well. This could create a stronger bond between the family making the savior sibling even happier about his or her purpose in this world. Therefore, one could argue savior siblings will enhance the emotions of the family as a whole.

In my opinion, in terms of the psychological issues, it is hard to imagine that a parent would not think about the savior sibling’s purpose in this world. At first the child may be happy that he or she was able to practically save someone’s life, but that happiness may change once he or she is being used more frequently to help his or her sibling, and enduring pain and suffering in the process. Therefore, the psychological issues will most likely become a large concern as the savior sibling feels as if he or she is being used as only a commodity.

PARENTAL DUTY

In general, parental duty is the responsibility and obligation that parents must give their children a fair and just life when raising them. This value is even more important for the case of savior siblings because of the moral aspect to the situation. Parents have the responsibility to do no harm to their children and make the best life for their children, but by creating a savior sibling, are parents violating their duty to the savior sibling? Could not having a savior sibling also violate a parent’s duty to their children?

Some points to consider about this situation are: Do the parents have the duty to go through with using technology to create a savior sibling because of their duty to keep their children healthy (in this case the sick sibling)? Or do the parents not have the right to go through with using this technology due to their parental duty to the savior sibling? How do the parents value the lives of both children equally without showing that the savior sibling was born solely for a medical purpose?

Those against savior siblings could argue that parents are responsible for treating both children equally and by having a savior sibling there is no possibility of this. The parents will look at the savior sibling for their sole purpose; curing their other child. This child may lose the respect he or she otherwise deserves from his or her parents. Respect for children is something crucial to the concept of parental duty. Another concern that could arise is if the parents love the savior sibling even more than the sick child. This shows that no matter what, one of the children will be valued over the other even without it being the intention. How the parents direct their attention could depend on a number of factors such as harm, emotional connection, and more. By using the definition of parental duty, the parents should provide a good quality of life for their children. This would not occur in a savior sibling as they will born healthy, but will be made unhealthy by their parents causing them to undergo treatments to help a sick sibling. The parents have the duty to not harm any children or future children which is another valid argument that goes against the idea of savior siblings. Therefore, one could argue that a parent’s decision to have a savior sibling violates the parent’s responsibility to their children.

Those in favor of savior siblings could argue that it was the parent’s duty to have a savior sibling so that they could lessen that harm of their sick child. By not helping to treat or cure their sick child, they are not abiding by their parental responsibility because doing nothing would create more harm to the sick child. The savior sibling will cause pain and therefore, both children will suffer, but parents may view that having a savior sibling it will balance out making the sick child undergo much less pain, because the other child is taking some of the pain away. If the savior sibling is only being used once, the harm will be little to none meaning that the savior sibling will either not remember their use as treatment, or it will be very short lived. They could also argue that generally, most parents do not always meet all of their duties perfectly, even if all their children are completely healthy. Sometimes there has to be some give or take, and in terms of savior siblings, this give or take would be in terms of the harm inflicted upon both children being balanced against the opportunity to cure or improve the life of the savior sibling. One could argue that in general, there is no way for all children to be treated equally, and each family has different needs to other families. Therefore, one could argue that a parent’s decision to not have a savior sibling violates their duty to their sick child.

In my opinion, parents have the duty to give their children the best lives possible (and protect them from harm and having a child that is going to be used as treatment for another child violates this duty. Although parents have a duty to cure a sick child to the best of their ability, another child does not deserve to take on the pain and suffering the sick child is currently going through. Once parents have gone through all their options that will not inflict harm on others, they have done their “duty” to treat their sick child as best as possible. Overall, in terms of parental duty, it is a parent’s responsibility to try their best to cure their sick child, but without inflicting harm on others.

SITUATIONS SIMILAR TO SAVIOR SIBLINGS

At the core, the values of concern in terms of savior siblings also appear in many other cases in the world of ethics. In general, the overarching similarity is the medical autonomy of children. When looking at children’s rights in the medical field, the question that arises is how much of a say do parents have in the treatment and care of their children, and can they ever override their child’s wishes? Parents constantly have to make decisions for their children, but in some cases the decisions are larger and have more of an impact on the child’s life. One example similar to savior siblings could be a parent’s decision to sequence their child’s genome at birth. In this situation, the parents can not receive an opinion from the child since he or she has just been born; therefore lacking the ability to make these decisions. In terms of savior siblings, he or she also can not voice their opinion as they are not born when the decision is made. Technically, the child’s autonomy is taken away, but depending on what the parents plan to do with their sequenced genome, could it potentially be worthwhile to go through with the process? Sequencing one’s genome at birth could potentially have many benefits. If parents were informed about certain diseases that could be prevented, such as breast cancer, there are many things that can be done in order to ensure that the disease will never “turn on.” In terms of savior siblings, this is similar because a child could be cured and another one could be brought into the world. On the other hand, the child’s genome could potentially set them at a disadvantage later in life. If the child has a high chance of having a late onset disease, discrimination may occur in terms of work. It may be harder for the child to get a job because most companies want to ensure their employees have a steady job; and at the end of the day, a company’s focus is to make a profit. Another concern is that the quality of life could be compromised because the person could spend much of their life worrying about the disease that they are likely to develop later in life even if there is nothing to prevent it. This is similar to savior siblings in terms of the future consequences that could arise. A savior sibling may feel a sense of neglect in their family that he or she was born for the sole purpose to serve for the needs of someone else. Therefore, this situation of genome sequencing at birth could benefit a child’s life, but also create many obstacles they will have to overcome along the way similar to the idea of savior siblings.

In terms of savior siblings, this scenario has many similarities. Both look at the potential harm that could be inflicted, but also the potential benefit. In terms of savior siblings, a life could be cured, and in terms of genome sequencing at birth, many potential diseases could be prevented. Another similarity between both is the value of autonomy. Savior siblings can not share their opinion on being created for a purpose, and neither can a baby whose genome is being sequenced. This lack of autonomy for children is a major boundary in medical ethics because parents are forced to think about what is best for their children. Another similarity is the possible future consequences that could arise. Although, the potential issues are different, both could have a huge impact on the child’s life. In terms of savior siblings, psychological harm could occur and in terms of the child’s genome that was sequenced, psychological harm, and discrimination could also occur throughout the course of their life. Overall, there is a high possibility the child could have a better life, but also many things that could “go wrong” or not as planned in the future. When put in this situation, parents are forced to weigh the benefits and drawbacks to make a decision about their child that has no right or wrong answer.

CONCLUSION

In the future, there are many questions and considerations to ponder about the ethics of having a savior sibling. What happens if there are psychological issues or unexpected consequences to some and not to others? Should that influence whether or not the technology gets used since not all issues or considerations can be identified and considered in advance?

As the technology that is used to create savior siblings becomes more advanced, the options for savior siblings will become more and more scientifically advanced. Therefore one can imagine that the idea of savior siblings could become more popular creating new issues. Parents could be creating these children to be matches for the sick child, but at the same time fixing some of their features. Once a parent begins to edit their child’s genome for enhancements such as hair color, eye color, etc, this begins a slippery slope resulting in more ethical dilemmas.

In terms of the value of fairness, if we can eventually change genes such as intelligence or athletic ability, this may pose a disadvantage for other children who are not similarly advantaged. Another concern related to savior siblings is that parents are making decisions for the sick child meaning they are not considering his or her autonomy in the situation. The autonomy of all four main stakeholders in this scenario should be taken into consideration (mom, dad, sick child, savior sibling) to ensure that this decision is ethical. It is also important to note that it is impossible for the savior sibling to ever consent in his or her genome being edited prenatally.

Due to these concerns, the usage of available technology to create savior sibling should be carefully considered and there should be strict regulations around this technology to ensure that it is only being used for its appropriate purposes and not for things like genetic enhancements. It should also only be contemplated if conceiving a savior sibling is really the only remaining option, and all other possibilities have been considered and tried or eliminated.

Before a parent makes the decision to conceive a savior sibling, other options should be considered. A few alternatives to savior siblings lie under the topic of Stem Cell Transplants. Under this branch, there are three different types of stem cells that could potentially be used to cure a sick child. A stem cell is a cell that can take the form of many different types of cells in the body including blood cells, skin cells, etc. The first two types are embryonic and fetal stem cell transplants.  Both technologies present the controversy over abortion, but the place where the cells are taken from differs in each method. Fetal stem cells are taken from an aborted fetus and embryonic stem cells are taken from fertilized embryos that have to be destroyed to gain these cells. The last type are called Adult Stem Cells. Adult Stem cells are taken from a living human are most useful for medicine in their  pluripotent form Pluripotent stem cells are derived from adult cells which are “de-differentiated”, to be able to develop into multiple kinds of cells and tissues. Since adult stem cells are taken from a living human, this eliminates the widespread controversy surrounding abortion. This type of stem cell transplant is the most ethical and clinically, and legally simple option. However, while it could  have considerable clinical potential, stem cell transplants are still in the very early stages of research and development

If conceiving a savior sibling is the only option clinically, strict rules and regulations should be present to ensure that the savior sibling’s rights are not violated. Depending on the savior sibling’s usage, different levels of harm are present. The harm to the savior sibling in the future should be looked at to see whether or not it is too much for him or her to endure. The likelihood that the sick child will be cured should also be investigated, as well as the age of the sick child to determine whether he  or she should have a say in a savior sibling being conceived for his or her benefit or when he or she should be able to make this decision. Regulations should also be made to regulate how much pain can reasonably be inflicted upon the savior sibling.

Depending on the age of the sick child, he or she may lose their autonomy when a parent decides to make the decision to conceive a savior sibling. If a savior sibling is conceived, the sick child should have a say in his or her treatment as soon as the child becomes mentally capable of processing what is going on around them. There should be no set age for when the sick child can make this decision because different children develop in different time frames. Overall, if conceiving a savior sibling is the only option, many other rules and regulations would have to take place in order to ensure that his or her rights are not being violated through the process of treatment.

Overall, this paper focused on topic of savior siblings surrounding the two main values of nonmaleficence and autonomy and the rights a savior sibling should or should not have in this situation. However, there are many other concerns that are at stake that need to be taken into consideration as this technology progresses.

By Maddie Zietsman

Would you conceive a savior sibling?

yes
no

surveymaker

Zietsman-Works Cited

2 Responses to Who Really Needs Saving? The Ethics of Savior Siblings and Their Autonomy

  1. Beverley Parker says:

    I believe Maddie Zietsman has explored her topic in a relevant and thought provoking paper. I had to carefully consider my preconceived opinion!

    I thoroughly enjoyed reading this informative and important work and congratulate Maddie and her supervisors.

  2. Ruth Deane says:

    Congratulations Maddie on a very well researched and written paper on an extremely interesting and complex topic. Certainly a lot of food for thought here, and so many aspects to consider. Well done!

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