A Thesis About Bodily Integrity

Elizabeth Loeb explores bodily autonomy in the context of politics and U.S. laws in her article, Cutting it Off: Bodily Integrity, Identity Disorders, and the Sovereign Stakes of Corporeal Desire in U.S. Law.

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From this article, I have gathered that the U.S. government, legally, has the right to dictate what one can and cannot do with their bodies. Within Loebs analysis, she compares the different motions in which a trans person must go through to make their physical body match their identity versus a white cis woman requesting breast augmentation to fit patriarchal norms of beauty (Loeb, 47).

One is subjected to years of psychiatric testing and strict regime, another is not, respectively. Then, she examines the ways in which government property incarcerated peoples or those in the military can commit acts of treason by forcibly modifying their bodies. Legally, these individuals are unauthorized to perform such tasks, and by doing so they would be charged with destruction of government property (Loeb, 49). Lastly, Loeb references abortion and the way that the possibility of another life is used as a tool of control against the pregnant. She also argues that U.S. justices continually justify their decision not in legal terms, but in physical ones, asserting again and again their ability to determine the terms of corporeal life (57). To have a corporeal life means to have a physical life similarly to habeas corpus, meaning you have a body. The irony in this is that habeas corpus is embedded within the U.S. constitution, but this undeniable right is manipulated to fit the context of the matter.

When Loeb brought up abortion, I began to think about the opposite of abortion and bodily integrity what if one used science and technology to create a life? Moreover, what if someone used that ?artificial life to cater to another being that lacks bodily integrity already? This led me to the 2004 novel, My Sisters Keeper, written by Jodi Picoult. The story follows 13-year old Anna Fitzgerald on her journey to sue her parents for medical emancipation after she discovers she was genetically engineered to save her old sister Kate, who is slowly dying from leukemia, and only she can provide the correct supplements. In short, Anna is a forced savior sibling. The English Oxford Dictionary defines a savior sibling as followed: 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.

Due to the realization that she was created to save her dying sister, Anna decides that she wants to be more than just that. She sues her guardians for medical emancipation, so she does not have to provide bone marrow, blood transfusions, and most importantly, a kidney for Kate. Anna feels as though she has no freedom with her life and guiltily wishes Kate would die for this reason, despite her love for her sister. She explains that the donating never stops, and that she did not consent to it either. When told that obviously, youve agreed to be a donor for your sister before she replies with nobody ever asked (Picoult, 11). This exemplifies the slippery slope in which savior siblings find themselves in, where one donation leads to another, getting increasingly more invasive until the sibling is either cured or eventually dies.

ARGUMENT

The true story that inspired My Sisters Keeper took place in 2000. The Nash family from Colorado engineered the first savior sibling to gain national attention in which they successfully provided a cure for Fanconi anemia, a very rare but ultimately fatal illness (H?¤yry, 7). Unable to find a bone marrow match for sickly six-year old Molly Nash, they used in-vitro fertilization to select an embryo without the Fanconi gene, which led to the birth of her younger brother Jack. From then on, their family was caught in a heated debate in which many criticized them for being selfish. Responses to the case consisted of: why would someone have a child just to place such expectations on them at a couple seconds old; this baby is not wanted as an addition to the family, but as a cure; and lastly, children are not spare body parts (Hendrickson).

After uncovering the true story in which Picoults novel was loosely based off of, several questions came to mind. What conditions are serious enough to warrant these lengths from a parent? What counts as ?consent in these instances? What are the psychological and physical consequences of the savior sibling? Should parents have the right to offer their childrens lives in favor of another? Of my research, I contest that children must be taught bodily autonomy and consent from a young age. Although reactions to the situations that Anna Fitzgerald/Jack Nash found themselves in contrasted each other, I stand by my claim that a child should not be manipulated into believing someone elses life depends on theirs and should not be placed in such a position until they are able to fully understand the outcome.

People have children for many different reasons. Anna Fitzgerald was medically engineered to provide what her sister lacked. This placed her in a precarious position within their familial hierarchy as well as retracting her ability to consent. Consent is usually given verbally through a yes or no. In Annas case, she was too young to express her consent, stating that the first time I gave something to my sister, it was cord blood, and I was a newborn (Picoult, 11). This set a precedent for every other medical procedure she would undergo throughout her life. No consent was asked, and because these procedures started from such a young age, she was socialized to believe it was normal. That was, until she was toldthat they chose little embryonic me, specifically, because I could save my sister, Kate (Picoult, 4). Ironically, Anna did not consent to being born, or being born for this specific reason. Because of this, Anna explains how she feels as though she is just as sick as Kate, because she has just as little to no freedom in her life. Anna has a moral obligation to her sister that she struggles with going against but chooses to sue for medical emancipation out of disdain for the impending outcome as Kates health goes downhill.

Janelle Mills points out that the language surrounding Annas donations further places her in a tight spot. Anna is in fact, not donating but forcibly and compulsory exchanging parts of her body to make up for what her sister lacks (Mills, 11). I wondered what the conditions were to become a donor in general, and found the guidelines of the American Academy of Pediatrics, which are listed as follows from Bruce Crooks Defending the Donor: When at-Risk Siblings Cannot Consent:

  1. No other suitable alternate source of stem cells is available.
  2. Donor and recipient have a strong, positive relationship.
  3. Strong chance of beneficial result for recipient from donation.
  4. Clinical, psychological and emotional risks for the donor are minimized.
  5. Informed parental consent and donor assent (when possible) be obtained.

As one can see, consent from the donor is not required because it is possible that consent cannot be verbally given. A newborn baby simply cannot consent to having blood taken from their umbilical cord to harvest stem cells. Does this mean the definition of consent should be modified or strictly defined in cases of savior siblings? Lacking a solid definition of consent can lead to damaging psychological effects on the donor in exchange for the health of the donee. One suggestion to prevent this would be to have frequent mental health checkups on both siblings involved and make it known that consent is retractable (Cordelia). It is important to note that instances that warrant savior siblings are not clearly defined. Life-threatening medical condition(s) are what the English Oxford Dictionary provides in their definition of a savior sibling, but there are no strict guidelines on what is necessary to consider the engineering of a savior sibling; there are only guidelines for who can be considered a donor.

This opens up a plethora of situations in which a savior sibling could be viable, but not absolutely necessary. It also opens the doors for conversation about the convenient ever-changing definition of what consent is. Loeb mentions how definitions of consent change especially when newborn bodily mutilation/modification is at stake. Baby boys are subject to nonconsensual circumcision at birth for nothing other than looks (Loeb, 52). Circumcision is not healthier for the baby and it puts the child in extreme pain. Would taking blood from the umbilical cord of a newborn also be considered bodily mutilation? I am not a medical professional; therefore, I can do nothing but pose the question. It is important to make these comparisons, though, because the principal of the situations are similar.

Studies have proven that one-third of children who have served as tissue donors for siblings developed post-traumatic stress disorder (PTSD) and psychosocial developmental issues (Mills, 11). Anxiety, depression, poor social relations, and low self-concept are just a few other psychological issues a savior sibling can often experience (Packman, 701). In addition to psychological ailments, savior siblings have to deal with physical pain despite being healthy. Bone marrow transplants cause deep bone pain and constantly giving blood leaves painful bruises. The procedures are both physically and mentally draining, and when coupled with the obligation that they are to save their sickly sibling heightens the psychological impact on a young and impressionable mind. Emotional rifts between siblings or even family have been proven to be a consequence of the savior sibling complex as well. It can produce feelings of inferiority towards the ailing sibling, feelings of unimportance, vulnerability, and guilt due to the seriousness of responsibilities bestowed upon the donor (Mills, 30).

Because of the conflicting morality of the situation, the donor may feel as though their life is disposable, or that their only purpose in life is to save their brother or sister. Anna Fitzgerald exemplifies this greatly and this is exactly what compels her to sue for medical emancipation from her parents. She struggles with coming to the decision out of love for her sister, but ultimately decides she can no longer withstand having control over her own bodily integrity. Anna asks herself, if you have a sister and she dies, do you stop saying you have one? Or are you always a sister, even when the other half of the equation is gone (Picoult, 72)? Her identity, literally, lies in Kates life. If Kate dies, her entire existence, she thinks, does not have any value. Being told that she was created to save her sister has obviously mentally coerced her into having a low self-concept, which Cordelia noted previously as an outcome of being the savior sibling. Anna had no one to advocate for her rights, therefore she had to herself. By suing for medical emancipation, Anna is retracting her consent for the sake of discovering who she is. She is making a statement with her and her sisters health in mind one mentally, one physically, respectively.

CONCLUSION

Upon my findings, I still stand by my position that children must be taught bodily autonomy and consent from a young age. This will set the premise for how they govern themselves and conceptualize their rights as their own individual person. To understand savior siblings, one must understand that it is complex with emotional, physical, psychological, and ethical issues from both the donor and the donee. In this essay, however, I decided the focus on the implications of being the savior sibling rather than the one who needs saving. Returning to the Nash family from Colorado, Jack and Molly appear to have no qualms about their relationship, and in fact have stated that they believe it gives them a unique bond (Hendrickson). However, Picoults depiction of the savior sibling debate exposes the harsher side of things. Being a savior sibling has been proven to increase existential crises in the donor sibling as well as hinder their psychosocial skills later on in life. PTSD, anxiety, and depression are common within the savior sibling as well. As harsh as it may sound, I believe that engineering another child in order to save a pre-existing one is immoral and unfair, especially to the donor sibling. Studies have proven there are more costs than benefits to creating a bond through savior siblings.

If one does not teach their child about bodily autonomy and consent from a young age they will not be capable of adequately making judgements about their body later on in life. A childs body is absolutely theirs, and pressuring one who cannot fully understand the extent of a situation into consenting to the responsibility of keeping another person alive does more harm to the individual than it does good for the family. The use of a savior sibling should not be the first option in instances of life-threatening instances. As I have learned, there are many psychological, physical, and emotional ailments that come along with being dubbed the savior sibling like a moral contract to the ill brother or sister that leaves the donor feeling unwanted or less than. I personally believe that if a savior sibling is absolutely necessary i.e., there is already no cure or no pre-existing perfect match to create one the least invasive procedures should be performed until the child is legally allowed to consent and fully understand the stakes.

Although Anna Fitzgeralds struggle is fictional, Jake and Molly Nashs were not; and even though Picoults novel is in direct contrast to the Nash familys everyday life, it details the legal, moral, and ethical fight to reclaim Annas bodily integrity and exposes the darker side of the savior sibling complex. Picoults novel should serve as a reminder that consent and bodily autonomy, especially in younger children, should be taught from a young age, and no childs life should be at the expense of anothers.

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