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Whilst attempts have been made to create taxonomies of genetic condition seriousness to inform clinical and policy decision-making, these have often relied on condition appraisals made by health and genetics professionals. The views of people with genetic conditions have been largely under-represented. This study explores the concept of seriousness through the perspectives of people with a range of \u2018clinically serious\u2019 conditions (fragile X conditions, spinal muscular atrophy, cystic fibrosis, haemophilia, thalassaemia). Attitudes towards suffering, quality of life (QoL) and\u00a0selective pregnancy termination were elucidated from 45 in-depth qualitative interviews and 469 postal\/online surveys. The majority of participants reported good health\/wellbeing, and the capacity for good QoL, despite experiencing suffering with their condition. Notably, participants with later-onset conditions held more negative views of their health and QoL, and were more likely to view their condition as an illness, than those with early-onset conditions. These participants were more likely to see their condition as part of their identity. Whilst most participants supported prenatal screening, there was little support for selective termination. Moreover, social environment emerged as a critical mediator of the experience of the condition. The complex and rich insights of people living with genetic conditions might usefully be incorporated into future genetic taxonomies of \u2018seriousness\u2019 to ensure they more accurately reflect the lived reality of those with genetic conditions.<\/jats:p>","DOI":"10.1038\/s41431-021-00962-2","type":"journal-article","created":{"date-parts":[[2021,9,27]],"date-time":"2021-09-27T01:02:56Z","timestamp":1632704576000},"page":"160-169","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":58,"title":["What is a \u2018serious\u2019 genetic condition? The perceptions of people living with genetic conditions"],"prefix":"10.1038","volume":"30","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3268-6276","authenticated-orcid":false,"given":"Felicity K.","family":"Boardman","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1077-9383","authenticated-orcid":false,"given":"Corinna C.","family":"Clark","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2021,9,27]]},"reference":[{"key":"962_CR1","doi-asserted-by":"publisher","first-page":"135","DOI":"10.1007\/s10897-015-9851-7","volume":"25","author":"JL Schneider","year":"2016","unstructured":"Schneider JL, Goddard KAB, Davis J, Wilfond B, Kauffman TL, Reiss JA, et al. \u201cIs It Worth Knowing?\u201d Focus Group participants\u2019 perceived utility of genomic preconception carrier screening. 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All participants were informed of the study aims and potential data uses. Interview participants signed a consent form, completion of surveys (anonymously) was deemed a proxy for consent.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval"}}]}}