The 2009 film My Sister's Keeper is a controversial fictional story about a mother's determination to prolong the life of her terminally ill child by whatever means necessary. It focuses on the Fitzgerald family. Kate, the eldest, has been diagnosed with acute promyelocytic leukemia from a young age. About a decade prior, the family's oncologist advised that Kate might eventually need a bone marrow transplant. With no family member being a genetic match, the doctor lightly suggests that a savior sibling can be genetically engineered to have selected traits to be Kate's match and can be conceived via in-vitro fertilization. This unconventional plan will also provide Kate with cord blood, which benefits her treatment. From this, Anna, the youngest child, was created. This story raises many themes, such as bioethical issues, medical autonomy, human rights, and the importance of consent.
There is growing recognition of designer babies in medicine; however, Anna's parents misused pre-implantation genetic diagnosis by conceiving a child whose sole purpose was to be a donor, devaluing and risking that child's life. Anna was never consulted before each procedure nor given the option to refuse due to passive-aggressive coercion from her mother. Kate's medical needs were at the forefront, while Anna's parents neglected her desires and emotions. The tension arises when Kate's (now fifteen) condition worsens and her renal function fails. Her mother naturally expects Anna (twelve years old) to provide a lifesaving kidney transplant to save her older sister. Shockingly to her parents, she refuses and sues them for medical emancipation.
The addition of children's rights to the human right agenda was articulated and organized in specific areas. It is important to remember that children's rights are a subset of human rights, which are those rights and freedom that belong to every human being from birth to death. These rights are based on shared values like fairness, dignity, respect, equality, and independence that are available to every person. These values are defined and protected by law. The American Academy of Pediatrics has since issued a new policy statement analyzing the issue of informed consent by pediatric patients: "… that even a child as young as seven can express an informed agreement with proposed medical treatment, and that if the child is properly informed and involved in the discussion, this can "foster the moral growth and development of autonomy in young patients."
With Anna being below eighteen, her parents had to permit her to be an organ/tissue donor. However, the ethical dilemma is that it is unknown whether the decisions made by the parents to let Anna donate are in the best interest of both Anna and Kate. Despite her being a minor, she can either decline or accept any medical procedure performed on her. This goes against autonomy, the right to self-determination. It is seen as though her parents were going against her autonomy to choose what she would want to be done to her body by trying to force her to donate a kidney to her sister Kate."It is important to recognize children's autonomy and their right to their body, which can be characterized as both property and privacy rights. With regard to property rights, every newborn human is "self-owned" and has the "exclusive right to 'possess, use, and enjoy' her body" (Teena-Ann V. Sankoorikal, [2002].)
As the legal battle ensues, Anna reluctantly admits that she is only refusing to go through with the kidney transplant, not because she reasonably deserves the comfort of having both her kidneys, but because she is taking this stand under the instruction of Kate. Kate does not want to go through with the surgery or any other suffering as she is ready to die peacefully, which is against her mother's wishes. The parent's assumed responsibility for making medical decisions for both daughters without their acceptance or consultation, despite the sisters' desire to discontinue treatment. According to John Stuart Mill, "the only purpose for which power can be rightly exercised over any member of a civilized community, against his will, is to prevent harm to others ." As a terminally ill patient, Kate was not harming anyone in society and thus should have the right to withdraw or refuse treatment and granted her desire to die in peace.
Anna and Kate were not given a chance to share their perspective nor disagree with what procedures their parents wanted them to undergo. Anna, in particular, was made unaware of any potential risks or side effects she may experience due to her multiple operations and hospitalizations in aid of Kate. The focus was not on her. Thereby, in her parent's eyes, the suffering or discomfort she may experience was minor compared to her sister's long battle with cancer. Her job was to provide for her sister and overlook her feelings or state of health.
This brings up the importance of informed consent. It is a basic legal-ethical principle that healthcare professionals must properly educate parents and receive permission before medical procedures. The main objective of informed consent is to enable the patient to participate in her health care decisions. This story shows that it is easy for coercive situations to arise in medicine. Patients can feel powerless and vulnerable. Since consent, by definition, is given for intervention for oneself, parents cannot provide informed consent on behalf of their children. Instead, they can provide informed permission for treatment (Informed Consent | UW Department of Bioethics & Humanities.)
However, children should be included in decision-making at a developmentally appropriate level, and consent should be sought when possible. Adolescents and mature minors are legally and ethically authorized to provide informed consent if they are emancipated. The neglect of informed consent was due to the mother's desperation to control Kate's fate and the physician's failure to counsel their adolescent patients instead of just the parents. It shows that the creation of designer babies to save another sibling complicates who has the right to make decisions. 'Savior siblings' are in a predicament where decisions are driven by the best interests of the ill-sibling, not for their well-being. Permission to perform procedures on an infant before and shortly after birth is unattainable. Hence, the parents represent them.
Overall, this was quite an intriguing movie, especially for future and present healthcare professionals and parents worldwide. It has spurred many ethical debates about the use of PGD to create savior siblings and whether or not the medical decisions made by parents are justified by their overall good intention- To save their child. My Sister's Keeper implies some thought-provoking questions such as "What does it mean to be a good parent, a good sister, a good person? What lengths must a person take to express love for another?"
References
Scholarworks.Gvsu.Edu, 2022, https://scholarworks.gvsu.edu/cgi/viewcontent.cgi?article=1337&context=honorsprojects
What Are Human Rights? | Equality And Human Rights Commission. Equalityhumanrights.Com, 2022, https://www.equalityhumanrights.com/en/human-rights/what-are-human-rights
What Are The 5 Key Principles In The Human Rights Act?". Legalknowledgebase.Com, 2022, https://legalknowledgebase.com/what-are-the-5-key-principles-in-the-human-rights-act
Ethical Dilemmas In Book My Sisters Keeper | Studydriver.Com. Studydriver.Com, 2022, https://studydriver.com/ethical-dilemmas-in-book-my-sisters-keeper/
Informed Consent | UW Department Of Bioethics & Humanities. Depts.Washington.Edu, 2022, https://depts.washington.edu/bhdept/ethics-medicine/bioethics-topics/detail/67
