2021 Theses Master's

Opting Out: The Importance of Parental Informed Refusals

Zimmerman, Anne Houck

Parental refusals concern both the doctor-patient relationship and the role of science in society. Parents make medical decisions for their children exercising both a responsibility to provide for them and a duty to protect them. While informed consent is looked upon favorably – doctors accept consent as it often evidences parents following recommendations – informed refusal can cause rifts in the doctor-patient relationship, sometimes resulting in a loss of parental decision-making power. Many refusals by attentive, caring parents are safe and result in benefits to children, for example by avoiding exposure to drugs with dangerous side effects. Other refusals could endanger children. The most difficult cases for doctors and parents touch on personal questions about quality of life or how much pain or which side effects a parent is willing to allow their child to endure from a medical treatment. The complexity grows when the care being refused would not guarantee an agreed upon success or even continued life. The Supreme Court has long recognized parental rights in the arenas where choice is personal and reflects flourishing and freedom. Philosophy and law support the ability to make personal decisions for children yet both moral philosophy and law limit the extent to which parents have full reign. Navigating the refusal landscape in the hospital or doctor’s office poses special challenges and requires balance with an eye to protecting vulnerable children while respecting parental autonomy. Refusals collectively comprise a necessary check on the role of scientific advancement in society. This paper also explores the role of refusals in pluralistic liberal democracies, how refusals may spark scientific innovation, and how overriding refusals disparately impacts marginalized communities, sparking discriminatory treatment and contradicting social justice. The ability of members of society to opt out of certain scientific advances is crucial to freedom and provides a much-needed check on the ever-changing status quo. Science should not make moral pioneers of skeptics who have worthy alternative solutions for their children. There should not be a presumption that accepting the recommended medical care is ethically preferable or that all medical care is a moral good. Democracy provides the ability of the electorate to configure valuable checks on science, industry, and medicine.