The objective of this paper, then, is to argue that it is necessary an explicit authorization for the procedures that lead to the creation of savior sibling, which involve the intervention of an impartial third party capable of protecting the well-being of the future child. In order to do this, we will divide this paper into three sections. First, a section that seeks to explain what the procedure is for the creation of savior sibling, its history and the bioethical problems related to it that have been identified in the bibliography and medical practice.
In the second section, I will revise the regulations in place in those countries that, in one way or another, have authorized the procedures that lead to the creation of savior sibling -PGD and IVF. Here I describe the requirements that legislation, the courts and ethics committees have demanded when seeking to regulate this practice and how these requirements have changed over time. Finally, in the third section, I analyze the opposing positions to my argument, and conclude stressing the importance of always considering an impartial third party opinion when deciding whether to donate organs and tissues from a child or one who is legally incompetent.
They do not seek to benefit the child who is being intervened but, rather, someone else The moral problem of non-therapeutic pediatric interventions lies in the irrefutable fact that they lie outside of the generally accepted borders of the minimum conditions needed for medical interventions in people who cannot consent. Children, obviously, cannot manifest valid consent at an early age, so their legal representatives must do so when considering treatments that will directly benefit them. These could be seen as cases of justified paternalism.
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However, medical interventions that do not provide a direct benefit to the child are more difficult to justify and this occurred in the case that I will present here. This illness affects the production of red blood cells, leukocytes, and platelets, promoting hemorrhage, as well as bone marrow abnormalities. The only known cure for FA today is the transplant of hematopoietic stem cells HSC , for which there must be a donor with a perfect genetic match, capable of replacing the affected immune system.
As a result of this process, on August 29, , the first Savior Sibling in the world was born in the U. In the U. The responsible U. However, in another case, and following these same criteria, the HFEA denied authorization to the Whitaker family, since their sick son Charlie did not have a hereditary disease whose prevention could justify the Pre-Implantation Genetic Diagnosis The most frequent medical interventions used have been blood transfusions, bone marrow transplants and organ transplants. These last two types of intervention clearly bring with them certain risks and harm to the baby, without producing a direct benefit for him or her.
Some, including the U. The countries that have only recently permitted it are Germany - where it is legal since and Switzerland, which has allowed it since September when it emerged victorious in a referendum For example, one must guarantee that the benefit to the child is greater than the risk of the intervention and that this intervention does not create excessive harm. Regulations in the U.pierreducalvet.ca/63384.php
Creating a Savior Child
This is similar to the regulation that existed in the U. The contrast between regulations in the U. While it is clear that allowing for the development of an embryo without a genetic disease will not harm a future child, the reasoning is actually the inverse: that the child born from this procedure is inherently benefitted solely due to the simple fact that without it he or she would not exist.
Even though there have been cases wherein people have demanded compensation due to their births in determined circumstances cases known as Wrongful Birth and Wrongful Life 24 the procedure should be authorized when it is shown that a healthy embryo will be selected and that he or she will be incorporated into the family and treated as another family member. Informed consent rules for non-therapeutic interventions in adults tend to be very strict. Consent is a necessary ethical tool that should accompany all medical interventions and a therapeutic end is, generally, the objective in medicine.
Creating a Savior Child
For this reason, the majority of medical procedures, excepting only a few cases of emergency care, require free and informed consent on the part of the patient In the case of SS, however, we confront a non-therapeutic intervention that is carried out without the express consent of the child instead, as we shall see, this consent is substitutive. As we have already mentioned, the authorization for this procedure can cover a wide range of possibilities, from umbilical cord extraction, to bone marrow transplant and, even, eventually, organ transplant The Substituted Judgment Standard, which originated in British courts, is applied in those cases in which the person was, once, competent, so that the representative will decide in accordance with what, in his or her opinion, the patient would have wanted in that situation.
On the other hand, when we are talking about individuals who have never been competent as in the case of small children we use the Best Interest Standard, derived from the authority that the law recognizes in parents over children. Parental consent in the medical context implies that, once born, the parents are legally able to consent to a non-therapeutic medical intervention in the name of the newborn Both bone marrow and live organ transplants have been related to a number of psychosocial and physiological risks for both donors and recipients.
HSCT studies on infant donors show an increase in stress and anxiety and lower self-esteem in donor siblings, as well as moderate levels of post-traumatic stress 17 , The physiological problems that infant donors face often have to do with the medicines used for anesthesia during the transplant procedure and the adverse effects of the transplant itself. In the case of bone marrow transplant, effects such as fatigue, pain at the site of extraction, lumbago, headaches, nausea, difficulty walking, sleep problems, and, less commonly, bleeding, have all been observed 20 , In the case of organ donors, in addition to the evident disadvantage of living with one less organ, there have also been reported risks of infection, temporary or permanent disability and, even, death 21 , In conjunction with this, there is also the risk of psychological suffering, of feeling resentment or depression as a result of the donation or due to transplant failure.
On the other hand, there are also those that have a positive psychological reaction, showing signs of closeness with the recipient and a sense of having contributed to the family 13 , Associations of healthcare professionals, such as the U. Although organ donation by children is rejected, on principle, they have admitted exceptions if four requirements are met:. Sometimes a fifth requirement is also considered: that the psychological and emotional risks for the donor child are minimized 13 , Starting in , with the first successful kidney transplant between identical twins, and followed by another three transplants in , the United Network for Organ Sharing UNOS has revealed that at least 60 children under 18 years old have been live kidney donors between and and another four have been living liver donors since In the hotly debated Little v.
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Little Case S. Today there continues to be a considerable number of cases of underage organ donation between siblings in the U. In this, the U. It also exists in Canada, were the first case occurred in , when a year-old girl donated a kidney to her twin sister In the E. Since the E. In this manner, organ donation on the part of minors is permitted in Belgium, Ireland, Luxembourg, Norway, Sweden, and the U.
The Transplant Law in Sweden regulates live tissue and organ donation on the part of minors. Donation is permitted if the child is related to the proposed recipient and if a suitable, compatible adult donor has not been found In England, Wales and North Ireland, there is no age limit for when people can be considered live donors 34 and, in Norway, they only demand that live organ donation be restricted to those minors who are able to consent Outside of Europe, there have been cases of kidney and liver donations on the part of children in countries such as Japan and South Korea 35 , In Latin America there have also been cases of donors incapable of giving consent who have been authorized to be organ donors, for example in Brazil Although there do not exist documented cases on the incorporation of PGD in the production of savior sibling in Latin America, consulting and comparing the international rules on organ transplant will, no doubt, prove extremely relevant to the conversation when seeking to regulate the inclusion of this procedure.
At the beginning of this paper, I stated that the Pre-Implantation Genetic Diagnosis to create donor children is a procedure that, as far as I know, has not been developed yet in Latin America. For this reason, the objective of the research presented here has been to analyze the procedures used for creating a SS, its regulation, and the ethical norms that have been agreed upon with regard to the donation of organs on the part of those who cannot consent, such as minor children. With this in mind, we have reviewed some of the laws that authorize this procedure and that allow us to make some conclusions concerning the basic principles and rules that should be adopted in Latin American countries.
Secondly, we must also make clear what type of donations we are willing to authorize from donors who are not able to give consent: only fluids and bone marrow? Or organ donation, as well? Finally, we must specify clearly the requirements for authorizing each one of these types of donations. Latin American countries should keep in mind that the creation of savior sibling poses dangers that must be considered when stipulating rules that will make this practice morally legitimate.
Paradoxically, these dangers are related to a task that is often seen as inherently good: saving the life of a child. For this reason, I would like to propose an additional measure. In conjunction with requirements that have been approved in laws passed by countries that authorize the creation of SS, such as the prevention of hereditary disease in an embryo and the donation of tissues and, eventually, organs, to a sick sibling only as a last resort, I would also propose that, in order to protect the donor baby, this donation should always be authorized by an impartial third party.
The reason for this is that in situations such as these we would be facing a typical case of justified paternalism; we cannot leave the decision in the hands of those who are most emotionally compromised, the parents. Stemming from this last point, our first conclusion, then, would be that any future Latin American regulation should begin by expressly defining whether compliance with the best interest principle should only be judged from the point of view of the parents. In contrast to this, there is also the possibility that best interest be judged by different regulatory authorities, such as what happens with the HFEA in the U.
Who Will Save the Savior Sibling?
K, the courts in the U. In each relevant case, these institutions are called upon to evaluate and rule on complex medical, social, legal, and family issues. The imperative to intervene, found in the courts, professional associations, and ethics committees referred to above, is based, precisely, on the conviction that deciding what is in the best interest of a SS cannot be left only to the parents. However, there are those authors who reject these policies, arguing that the State is unjustly intervening in family autonomy and in their intimate decisions. In order to evaluate the ethical category of an action we must focus on how those results were obtained.
For example, although doing medical experiments on vulnerable populations can produce results that benefit the rest of society; those experiments are not ethically justifiable, because they violate human dignity. This does not mean that parents will not love and care for the SS in fact, this is the norm That is to say, a consent that is permeated by strong emotions, and, so, not truly free nor conscious. This would mean that the selection of an embryo would primarily be based on liberating a future child from an inherited genetic disease.
At the same time, I do not see how PGD and therapeutic ends have much to do with this, and it would not help to prevent these situations in any way. Since it is highly likely that the procedures used to create savior sibling and the associated consequences in terms of organ donation will continue to develop unabated, it would be a very good idea for Latin American legislatures, courts, ethics committees and healthcare operatives to agree on norms and standards that would impede excessive arbitrariness and potential abuses. This dispute between parents ended up in the Illinois Supreme Court, which ruled in favor of Curran.
In this case, the twins were only biologically related to their half-brother, but he did not live with them and, in fact, they barely knew him. The Illinois Supreme Court argument followed in this vein, ruling that, in order for donation to be permitted, there should be a close relationship between donor and recipient We should not forget that the case of SS is not the only one in which State intervention in the family is required.
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On the contrary, the majority of Western societies impose limits on what parents may do with their children. Those limits are based on the sad reality that parents may abuse or neglect their children, and, so, the State may have to intervene and take custody from them, particularly when the health and safety of the child are threatened. For this reason, I believe that it is absolutely fundamental that countries that may develop this procedure in the future also propose regulations that recognize the necessity of involving an impartial third party in final decisions, for example, ethics committees, courts, or regulatory authorities, like the HFEA in the U.
Final decisions with regard to organ donation on the part of children or those who are legally incompetent are very delicate and deserve being ruled on by an impartial third party. Little S. Es decir, una voluntad impregnada de tal carga emocional que, en verdad, no es realmente libre ni consciente. National Center for Biotechnology Information , U. Journal List Colomb Med Cali v. Colomb Med Cali. Published online Sep Author information Article notes Copyright and License information Disclaimer. Corresponding author.
Abstract A Savior Sibling is a child who is born to provide an organ, bone marrow or cell transplant, to a sibling that is affected with a fatal disease. Key words : Non-therapeutic medical interventions, Children organ transplant, bioethical legislation. Introduction It is common that advances in medicine and bio-medical research occur faster than bioethical ruminations concerning their morality.
Concurrently, the following arguments against the creation of savior siblings will not be analyzed, apart from, perhaps, a few indirect references: That PGD and IVF are ethically questionable procedures because they imply the destruction of human embryos Although organ donation by children is rejected, on principle, they have admitted exceptions if four requirements are met: when there is evidence that the potential donor and recipient will be benefitted; when the surgical risks for the donor are extremely low; when all other resources have already been exhausted for example, it is not possible to use organs donated by an adult ; and when there does not exist the time nor the effective possibility of receiving through a deceased donor.
Organ donation by the legally incompetent: is it really that much of an exception?
Some final reflections At the beginning of this paper, I stated that the Pre-Implantation Genetic Diagnosis to create donor children is a procedure that, as far as I know, has not been developed yet in Latin America. Conclusion Since it is highly likely that the procedures used to create savior sibling and the associated consequences in terms of organ donation will continue to develop unabated, it would be a very good idea for Latin American legislatures, courts, ethics committees and healthcare operatives to agree on norms and standards that would impede excessive arbitrariness and potential abuses.
The second argument is about the moral status of the embryo, stemming from the fact that the PGD process includes the creation of multiple embryos and the destruction of them except for the selected embryo.
To this argument, from the moment of fertilization the embryo has a moral value and thus no embryo should be deliberately destroyed.
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