Summary
My sister’s keeper is an American movie, released in 2009. It is inspired by Jodi Picoult’s novel published in 2004. This movie deals with the story of the Fitzgerald family, in which one of whose members is facing illness. Indeed, Kate (15 years old), played by Sofia Vassilieva, has been suffering from leukemia since she was 2 years old. Her parents, Brian (Jason Patric) and Sara (Cameron Diaz) were ready to do anything to save her. Unfortunately they are not matching donors and their oldest son, Jesse, is not as well. That is why the oncologist suggests a miracle solution to them: to use science for creating a “savior sibling”.
In short, how does it concretely works? This technique is called preimplantation genetic diagnosis with HLA typing. Originally, this PGD technique, accepted in 1994, was only allowed for incurable genetic diseases (e.g. Huntington’s disease). It consists in a selection of embryos that which are not carriers of the disease. Then, in the case of savior sibling, there is a second stage which allows us to go further. The one embryo that will have an immune system compatible with its sick brother or sister from the healthy embryos is selected. Since the umbilical cord is rich in stem cells, it is the first element from the savior sibling that will be used to save his elder.
Thus, the audience follows the story of Anna (Abigail Breslin), 11 years old, who was born to save her sister. After many hospitalizations, the girl must now donate one of her kidneys to save her sister’s life. But she refuses to do so. She even decides to sue her parents and demand medical emancipation so that she can make her own decisions concerning her body.
Personal reflection
This movie relates with aptness the story of a family’s relationship when one of the children has a serious illness. We can notice a huge evolution in these following the announcement of the disease. For example, Sara was a lawyer and stopped working to take care of her daughter. She is very dedicated and fights every day against her daughter’s illness, by giving unconditional support and love. Therefore, the majority of her time and attention is focused on her daughter. Consequently, we feel that she progressively forsakes her marital relationship. This family lives from day to day at the rhythm of hospitalizations and treatments. As Kate said in the movie, her illness is killing her, but it is also killing her family.
As everything revolves around Kate, sometimes the other children of the family are taking a back seat. It is the case of Jesse, the eldest child in the family. Indeed, he is suffering from dyslexia, nevertheless it seems that this learning disability has not been identified at an early age. Moreover, we often see him alone on the screen. At one point, he even comes home very late because he missed the last bus, but nobody noticed his absence. He feels very guilty for not having been the one who could help his sick little sister. On top of that, he has the feeling of being powerless against the instrumentalisation of Anna’s body. He seems to be in pain and having difficulties to express it. He is probably tormented by the following question: what legitimacy do I have to complain while I am in good physical health? This type of reasoning is common among brothers and sisters of a sick or disabled child. That’s why, I think it is important to be able to offer psychological support to families facing the disease. Every person can experience difficulties, not just the sick person. For example, finding one’s place, feeling legitimate to express one’s negative emotions, hopes or doubts.
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On my mind, the character of Anna seems to be the most important to study. It brings into play the moral and ethical dilemma of conceiving a life to save someone else’s life. Indeed, according to Anna, if her sister had not been ill she would never have been born. She raises a number of questions, either explicitly or implicitly. For example, what is the place of the savior sibling? Why did she came into this world? Was her birth the real expression of the desire to enlarge the family, the result of love? Or was she conceived because she had a mission to fulfill, was the last hope, only a savior? We may wonder how this child can see herself as an individual in her own right and not only as a person linked to her elder to whom she owes her existence. Furthermore, we can ask ourselves: what would happen if she could not save her sister? It is obvious that a feeling of guilt, lack of self-esteem and self-confidence could arise.
Her parents thought that it was normal for her to help her sister. Therefore, the first hospitalization took place at the age of 5. Side effects and complications were common, she took sleeping pills and growth hormones. From her parents’ point of view, it was the only solution to save their child. This observation raises the question of informed consent, and if we focus on Anna’s point of view it’s easy to understand her rebellion. She has never been asked for her opinion because it makes sense that she would do anything to help because she does not want her sister to die. That is why, Anna presents her vision of things by pointing out that she does not want to suffer of consequences of surgery, and that she is not consenting. On one hand, her father realizes that they have been imposing their choices to her for a very long time, and that he should accept her refusal. On the other hand, her mother is outraged, and may seems to be heartless, but if Anna refuses the surgery she will have to face the death of her child. There is a dilemma within the parental couple between the child being treated and the one who is treating. The whole question in this movie deals with the place and rights of Anna concerning the medical decisions her parents make about her body. At what age is she supposed to be able to understand and make her own choice? How can this autonomy be judged and recognized? None of the professionals have the answer.
As a reminder, there is no single solution to an ethical problem. It is a moral reflection based on principles, those of bioethics are: the principle of respect for autonomy, the principle of beneficence, the principle of non-maleficence and the principle of justice. These principles make it possible to protect the dignity of the individual by taking into account and respecting his fundamental rights in the field of biology and medicine. The informed consent of the person when there is an intervention on his body is a key basis. In France, principles that structure the bioethical legal framework are: dignity, freedom and solidarity. Dignity, which is brought into play when talking about savior sibling, refers to respect for the individual from the beginning of his life and an absence of patrimonial character of the human body. For example, it is the anonymity of the donation of the elements and products of the human body that avoids any pressure. Here in our situation, it is not the case. On top of that, freedom attempts to preserve the privacy and autonomy of the individual in his or her choice. It gives an important place to the possibility of the person being able to express a truly free and informed personal consent.
The notion of informed consent seems essential to me but it is not the only one which must be taken into account. These saviors’ siblings feel, consciously or unconsciously, a certain pressure and responsibilities that can make them suffer. Indeed, from an early age they are confronted with painful things, both physically and psychologically. From my point of view, it seems important to surround and guide the families who enter this process. This can be interesting in order to know their motivations and expectations, to prepare them for possible failures and the fate that may befall their child. It might help them to invest into the new child, to take into account his wishes, his desires, his opinions. We have to kept in mind that a savior sibling is, in a way, the heart of his family, because without him the heart of his elder would no longer beat.
Related information
Nowadays in France, this is still a very controversial subject. The bioethics law – which among other things deal with subjects such as PMA – has shed light on the question of the conception of savior sibling. In October 2019, the National Assembly voted an amendment to stop this practice. Indeed, the law of August 6, 2004 has allowed it on an experimental basis, but since 2014, there was almost no need to practice it. As a matter of fact, France has a public bank of umbilical cord stem cells which allows to satisfy the needs. However, on July 31, 2020, the National Assembly debated again and voted for a relaxation of the law, allowing families who have no other solution to conceive a child thanks to this medical technique.
Word I have learned
- Umbilical cord : cordon ombilical
- Elder: grand frère / grande soeur / aîné
- To forsake : abandonner / renoncer
- To sue : poursuivre en justice
- To dedicate : dévouer
- Aptness : justesse, pertinence
- Powerless: impuissant
Sources
by Anaïs Riou