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Social and cultural influences on genetic screening programme acceptability : a mixed methods study of the views of adults, carriers and family members living with thalassemia in the UK
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Boardman, Felicity K., Clark, Corinna C. A., Jungkurth, Elsita and Young, Philip J. (2020) Social and cultural influences on genetic screening programme acceptability : a mixed methods study of the views of adults, carriers and family members living with thalassemia in the UK. Journal of Genetic Counseling, 29 (6). pp. 1026-1040. doi:10.1002/jgc4.1231 ISSN 1059-7700.
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Official URL: https://doi.org/10.1002/jgc4.1231
Abstract
As population‐level carrier screening panels for reprogenetic information emerge globally, conditions to be included, and the timing of implementation is widely debated. Thalassemia is the only condition for which population‐based prenatal carrier screening is offered in the UK. However, little is known about the views and experiences of the UK thalassemia‐affected community toward this screening or other forms of genetic screening for thalassemia (newborn, preconception), despite the range of direct consequences of screening programmes for this group.
Using a mixed‐methods integrative analysis (qualitative interviews n = 20 and quantitative survey n = 80), this study outlines the experiences and attitudes of adults with thalassemia, their family members, and screen‐identified thalassemia carriers toward preconception, prenatal, and newborn screening for thalassemia. The majority of participants described thalassemia as a burdensome condition with a range of negative impacts, which contributed to their strong support for screening in all its potential formats. However, the data also highlight the challenges of each screening mode for this group, reflected in the high level of value conflict in participants' accounts and decisions. Cultural, social, and (to a lesser extent) religious factors were found to mitigate against the advantages of early screens, particularly within faith communities. Social stigma emerged as key to this process, informing the way that thalassemia severity was not only perceived, but also experienced by affected adults, which ultimately influenced screening uptake and outcomes.
These findings suggest that cultural and social sensitivity is as important as the mode of screening delivery itself, if the iatrogenic and unintended harms of screening—particularly the social/psychological burden of value conflict—are to be adequately addressed and minimized.
| Item Type: | Journal Article | ||||||||
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| Subjects: | R Medicine > RB Pathology R Medicine > RJ Pediatrics |
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| Divisions: | Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences Faculty of Science, Engineering and Medicine > Science > Life Sciences (2010- ) 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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| Library of Congress Subject Headings (LCSH): | Genetic screening -- Moral and ethical aspects, Thalassemia, Genetic disorders -- Diagnosis -- Moral and ethical aspects, Newborn infants -- Diseases -- Diagnosis -- Moral and ethical aspects | ||||||||
| Journal or Publication Title: | Journal of Genetic Counseling | ||||||||
| Publisher: | Wiley | ||||||||
| ISSN: | 1059-7700 | ||||||||
| Official Date: | December 2020 | ||||||||
| Dates: |
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| Volume: | 29 | ||||||||
| Number: | 6 | ||||||||
| Number of Pages: | 15 | ||||||||
| Page Range: | pp. 1026-1040 | ||||||||
| DOI: | 10.1002/jgc4.1231 | ||||||||
| Status: | Peer Reviewed | ||||||||
| Publication Status: | Published | ||||||||
| Access rights to Published version: | Open Access (Creative Commons) | ||||||||
| Date of first compliant deposit: | 6 February 2020 | ||||||||
| Date of first compliant Open Access: | 5 May 2020 | ||||||||
| RIOXX Funder/Project Grant: |
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