Mapping the benefits and harms of antenatal and newborn screening programmes

Résumé fourni par la source

Health screening is undergoing seismic change that includes the potential forpersonalized medicine, big data, whole genome sequencing, artificial intelligence and the development of novel and experimental therapies. Acceptability research typically gathers cross-sectional data that identifies and characterizes the harms and benefits of screening programmes, as well as the ways they are experienced, weighed and valued by different groups. Efforts to integrate these types of data into the evidence synthesis and evaluative processes of health screening policy-makers have demonstrated that stakeholders perceive a ‘panoramic’ range of harms and benefits of screening far beyond the remit of policy criteria, and ‘ripple’ backwards and forwards in time. However, relatively few studies have explored these wider impacts of screening and perceptions at different time points. Using the conceptual lens of a ‘reproductive journey’, this paper builds on existing health screening acceptability research by drawing on diverse and longitudinal qualitative datasets to demonstrate the evolving nature of harms and benefits across time, place and context. Secondary analysis, using situational mapping, of eight large interview datasets collected in the United Kingdom has identified a wide range of harms and benefits related to antenatal and newborn reproductive screening and demonstrated the complexity and vast range of experiences that surround these journeys. The analysis demonstrates that over time and space harms and benefits can have cumulative and amplifying effects, and the need for methodological development in acceptability research that meaningfully incorporates these complex and nuanced harms and benefits is paramount.

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