Human Germline Genome Editing as a Potential Reproductive Choice: An Exploratory Sociological Study in the United Kingdom
This thesis explores key factors that appear to influence attitudes towards the use of human germline genome editing (hGGE) as a reproductive choice in the United Kingdom (UK), and suggests how identifying these factors could assist in the design of future regulation. Key factors were identified using a three-phase process of primary data gathering. These included a mixed-methods online survey of a tailored sample of 521 members of the British public, semi-structured interviews with 13 relevant experts and professionals, and structured interviews with 21 people affected by monogenic conditions. Data from these three sequential phases of research were triangulated to identify the findings presented in this thesis. The findings indicate that support for applications of hGGE as a potential legal reproductive choice in the UK may be contingent on three precursory conditions being met. First, that hGGE is robustly regulated to limit its potential applications to preventing disease. Second, that the scientific concerns surrounding the safety and success of hGGE technologies are resolved before the technology is approved for use. And third, that if hGGE were to become a possible reproductive choice in the UK, equitable access to its benefits could be of importance. Other factors, such as the nature and perceived severity of a genetic disease in relation to quality of life and to a person’s mental health, also appeared to influence the attitudes of respondents to and participants in this research. Chapters 1-2 introduce the research question and methodology. Four subsequent chapters explore the significance of the research findings, and how they might inform the design of future regulation of hGGE in the UK. Two recommendations and eight considerations for future governance are summarised in the concluding chapter.
Genetic Disease, Human Germline Genome Editing, Reproductive Technologies
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