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In the 2009 film My Sister’s Keeper, Sara and Brian live an idyllic life with their young son and daughter, Jesse and Kate. But their family is rocked by the sudden, heartbreaking news that Kate has leukemia. The parents' only hope is to conceive another child who is a genetic match for Kate, so that the child can act as a donor to save Kate’s life. That child is Anna.

Throughout their young lives, the sisters endure various medical procedures and hospital stays, which become just another part of their close-knit family's otherwise normal life. Over the course of ten years, Anna donates cord blood, bone marrow and white blood cells. However, the parents' desperate decision erodes their relationship, and their intense focus on Kate and her illness causes the well-being of Anna and Jesse to be neglected.

By age 11, Anna has had enough of being subjected to medical procedures for the sake of her sister. Seeking medical emancipation, she hires her own lawyer and initiates a court case that causes tension in the family and that, if successful, would eliminate the possibility of future life-saving interventions for Kate.

The film raises thorny ethical questions about when, and for what purpose, parents can make medical decisions for their children. Can parents consent to any procedure on behalf of their child? Or should they be permitted to consent only to those procedures that are expected to be in the child’s best interest? What if the parents’ idea of the child’s best interest diverges from the physician’s? Once they are old enough to understand, should the child’s agreement to the procedure be solicited? And, when in conflict, at what point should a child’s decision regarding their own medical treatment outweigh the parents’ wishes and/or the physician’s recommendation?

AMA Code of Medical Ethics Opinion 2.2.1, “Pediatric Decision Making,” states that in “giving or withholding permission for medical treatment for their children, parents/guardians are expected to safeguard their children’s physical health and well-being and to nurture their children’s developing personhood and autonomy.”  It further specifies that “the more mature a minor patient is, the better able to understand what a decision will mean, and the more clearly the child can communicate preferences, the stronger the ethical obligation to seek minor patients’ assent to treatment.”  In addition, Opinion 2.2.5, “Genetic Testing of Children,” recommends that physicians “[r]efrain from offering, providing, or recommending a genetic test [for a minor patient] … for the benefit of a family member, [or] when testing will not serve the child's health interests.”

To further explore the AMA Code of Medical Ethics, please visit AMAethicscode.org.

 

Published on December 5, 2023