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"I didn’t take it too seriously because I'd just never heard of it" : experiential knowledge and genetic screening for thalassaemia in the UK
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Boardman, Felicity K. and Hale, Rachel (2019) "I didn’t take it too seriously because I'd just never heard of it" : experiential knowledge and genetic screening for thalassaemia in the UK. Journal of Genetic Counseling, 28 (1). pp. 141-154. doi:10.1002/jgc4.1042 ISSN 1059-7700.
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Official URL: https://doi.org/10.1002/jgc4.1042
Abstract
Members of the public face particular challenges when undergoing reproductive genetic screening. Lack of family history with genetic disease has been identified as a key barrier affecting screening uptake and responses to genetic risk. This study explores this obstacle using beta thalassaemia as a case study. Fifteen in-depth qualitative interviews were conducted exploring the reproductive views and decisions of people at risk of transmitting thalassaemia. Eleven participants had thalassaemia themselves and/or were members of an affected family. Four participants were identified as thalassaemia carriers through genetic screening programmes with no family history. Notable differences were observed between these two groups. For thalassaemic individuals and families, past experience clarified and facilitated their sense of reproductive responsibility, however carriers struggled to relate to, and incorporate the information into their lives. It was witnessing their child becoming symptomatic - rather than receiving a diagnosis or genetic risk information per se- that had the most substantial influence on carriers’ subsequent views and decisions. Educational resources used to support genetic screening programmes would benefit from an engagement with the experiential accounts of life with genetic disease in order to more effectively bridge the chasm in knowledge and understanding between affected families and the general public, towards whom expansive genetic screening is aimed.
| Item Type: | Journal Article | ||||||||||
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| Divisions: | Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences > Social Science & Systems in Health (SSSH) Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School |
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| Journal or Publication Title: | Journal of Genetic Counseling | ||||||||||
| Publisher: | Springer New York LLC | ||||||||||
| ISSN: | 1059-7700 | ||||||||||
| Official Date: | February 2019 | ||||||||||
| Dates: |
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| Volume: | 28 | ||||||||||
| Number: | 1 | ||||||||||
| Page Range: | pp. 141-154 | ||||||||||
| DOI: | 10.1002/jgc4.1042 | ||||||||||
| Status: | Peer Reviewed | ||||||||||
| Publication Status: | Published | ||||||||||
| Access rights to Published version: | Open Access (Creative Commons) | ||||||||||
| Date of first compliant deposit: | 31 August 2018 | ||||||||||
| Date of first compliant Open Access: | 23 January 2019 | ||||||||||
| RIOXX Funder/Project Grant: |
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