Responding from the Place of Suffering: Informed Consent and Non-invasive Prenatal Genetic Screening [BOOK CHAPTER]

Responding from the Place of Suffering: Informed Consent and Non-invasive Prenatal Genetic Screening [BOOK CHAPTER]
Michael McCarthy
Suffering in Theology and Medical Ethics, 3 December 2021; pp 179–187 [Brill]
Introduction
…Informed consent after a positive screen for Trisomy 21, Down syndrome, should move from an individualist model of autonomy to a principled autonomy that allows the patient to explore the decision from her reality. This shift would need to incorporate the medical facts, understanding the risks and benefits, and learning from those faced previously with similar decisions. This chapter begins, first, by describing non-invasive prenatal genetic screening. Secondly, it explores what constitutes informed consent through an individual/utilitarian model of autonomy and juxtaposes that with principled autonomy grounded in Ada María Isasi-Díaz’s mujerista hermeneutic, lo cotidiano. The chapter concludes by drawing on both insights from minority participants in clinical research and parents of a child with Trisomy 21 in order to enhance the process for informed consent. Better understanding the reality of the patient and explaining the potential options in a way that prioritizes the patient’s reality allows her to make a responsible and informed decision…