Moral and ethical issues in My Sister's Keeper by Jodi Picoult

MY SISTER’S KEEPER 1 MY SISTER’S KEEPER 5

My Sister’s Keeper: An Ethical Perspective X. Ample zzzzz

Ethical Issue: Genetic Technology in Healthcare “I was born because a scientist managed to hook up my mother’s eggs and my father’s sperm to create a specific combination of precious genetic material...because I could save my sister, Kate,” (Picoult, 2004, p. 7-8). Anna, the protagonist of Jodi Picoult’s novel My Sister’s Keeper bemoans her special status when she first introduces herself to readers and throughout her narrative. Picoult’s novel raises several interrelated ethical issues in healthcare, including those related to the autonomy and self-determination of minors and the rights of those who, due to medical circumstances, lack the power to make their own healthcare choices. One of the overarching issues in the book, and the one most central to Anna’s story, is that of medical technology. Medical technologies have allowed for processes like in vitro fertilization, which has become relatively common practice in spite of what Anna claims at the opening of her story when she states, “unlike the rest of the free world, I didn’t get here by accident,” (p. 8). Of course, Anna’s attitude towards her purpose in life, her background and origin story, and her relationship with her sister Kate do change with age and maturity. Her own ethical stance alters somewhat, and yet Anna internalizes the anger she feels towards her parents to the point where she seeks medical emancipation. When Anna seeks emancipation, readers immediately sympathize, mainly because of the way her parents seem to be deliberately using her as opposed to viewing Anna as part of the decision making process. Anna is what is known as a “savior sibling,” (Raz, Schues, Wilhelm, et al., 2017, p. 191). The “savoir sibling” phenomenon is a peculiar one from a medical ethics standpoint. In a different family, Anna might have been provided with a more substantial degree of self-determination but in My Sister’s Keeper, Anna remains bereft of the opportunity to exercise her rights as a human being. Savior Siblings and Autonomy Advanced genetic technology has particularly transformed reproductive science and reproductive practices around the world. Many people do not seem to have a problem with in vitro fertilization for couples who cannot conceive, in many cases advocating passionately on their behalf in spite of the pressing need to adopt unwanted children who have already been born. Yet introduce the possibility that a couple might deliberately engineer a child so that it will have the genetic features conducive to an organ donation for a sibling and people start to raise red flags. From a nursing perspective, it is critical to focus on the principle of autonomy in medical ethics. Autonomy is a core precept of nursing ethics. The American Nurses Association stresses the central importance of autonomy in its pay-to-access code of ethics (Olson & Stokes, 2016). The savior sibling phenomenon addressed in My Sister’s Keeper is inextricably linked with that of patient autonomy. Interestingly, attitudes towards savior siblings may be culturally embedded, requiring closer scrutiny of contextual variables when nurses counsel patients considering whether or not to have a savior baby to save the life of a sick child (Raz, Schues, Wilhelm, et al.). A nurse faces an ethical dilemma when addressing the issue of savior siblings. After all, to not support the right of the parent or the sick child to have access to an organ donor essentially sentences the sick child to death. On the other hand, facilitating the birth of a savior sibling runs the risk of impeding the autonomy of that child. Picoult’s novel focuses mainly on the latter issue, while sensitively addressing the needs of the parents and their desire to keep Kate alive. From Anna’s perspective, her parents love Kate first and foremost and only had her to be a savior and not to love her for her own inherent worth. Given the way the story ends, Picoult clearly comes out against the phenomenon of savior siblings, and does so in an unnecessarily pedantic way that skirts around the complexity of the issue. Anna dies in a car crash—something that can be considered an “act of God,” something as out of her control as the circumstances of her birth. As such, the entire concept of autonomy becomes called into question. No individual on earth could have asked to be born. Many people were in fact, planned children and not the accidents that Anna claims them to be. The savior sibling is not inherently an unethical practice, for the life of the sibling becomes intimately and in many ways beautifully entwined with that of the family and community. Few individuals have the opportunity to be born with such a strong sense of purpose: to save the life of another person. Anna does not see her role that way, which is her right. The ethic of autonomy is the most salient principle in My Sister’s Keeper because Anna’s parents seem to have stripped their second child of that right. The parents should do everything they can to save Kate’s life, but not at the expense of harming another being. Anna does have the right to refuse the kidney transplant, and is justified in seeking medical autonomy on the grounds of autonomy as well as non-maleficence. Also cornerstones of nursing ethics, beneficence and non-maleficence refer, respectively, to the duty to do good for the patient and the duty to not do harm. When it comes to savior sibilings, nurses must take great care to address the needs of the savior sibling and not to focus only on the needs of the parents and the other sibling. Conclusion As medical technologies become more advanced, nurses need improved ways of responding to situations like these. Medical technologies can be tremendously beneficial. Instead of fearing genetic science, nurses can advocate for policy that strengthens the rights of savior siblings, allowing Anna more self-determination throughout her childhood, and alerting the parents of the limitations on their control over their daughter’s life. It is likely that Anna would have willingly submitted to the surgery had she been given the power to make that decision on her own. The power of self-determination remains crucial in healthcare, especially as the body is only one component of the whole human being.