What is a ‘serious’ genetic condition and why it ethically matters?

The use of ‘serious’ to describe certain genetic conditions is pivotal in determining current and future applications of repro-genetic technologies. From Preimplantation Genetic Testing (PGT), through prenatal testing, all the way to potential gene editing, this concept is used as a justification for allowing or even funding certain interventions. Yet, the concept of ‘serious’ remains nebulous and poorly defined. Consequently, its application is inconsistent and not equitable. Recent work across a range of disciplines and international contexts has begun the process of mapping the contours of this complex concept. This work considers a range of stakeholder perspectives and various approaches to its operationalization. A better understanding of this concept can assist policy makers, clinicians, and families to apply it in relevant contexts. This talk will explore the implications of ‘serious’ and the emerging attempts to clarify its use.

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