Conceptualising Severity in a Genomic Age

Introduction :

The concept of the ‘severity’ or ‘seriousness’ of a genetic condition (disease/disorder) is pivotal to determining current, and future, applications of genomic medicine, particularly those relating to reproduction. Yet this concept remains nebulous and poorly understood (Molster et al, 2017; Wertz and Knoppers, 2002; Boardman et al, 2018). Work has begun to explore the psycho-social and ethical dimensions of condition severity relevant to reproductive planning in the context of genomic technologies, taking account of the views of a broad range of stakeholders (Kleiderman et al 2019; Boardman & Clark, 2021). Yet, research remains disparate, being conducted across international contexts, disciplinary boundaries, and technological applications, with little conceptual and practical integration. This three-day workshop will bring together inter-disciplinary scholars from across the globe who are leading work exploring the concept of ‘severity’ in relation to genetic conditions.

The workshop will:

a) consolidate existing knowledge through the production of a framework of factors relevant to a cosideration of severity

b) facilitate the creation of new collaborative relationships

c) identify gaps in research

d) build consensus on future research priorities

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