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How do genetically disabled adults view selective reproduction? : impairment, identity and genetic screening
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Boardman, Felicity K. and Hale, Rachel (2018) How do genetically disabled adults view selective reproduction? : impairment, identity and genetic screening. Molecular Genetics & Genomic Medicine, 6 (6). pp. 941-956. doi:10.1002/mgg3.463 ISSN 2324-9269.
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Official URL: https://doi.org/10.1002/mgg3.463
Abstract
Background: Genomic medicine is rapidly evolving, particularly in the domain of reproduction. Population carrier screening for a range of disorders is becoming possible using whole genome/exome sequencing. However, very little is known about the views of genetically disabled attitudes towards selective reproduction.
Methods: Forty-three in-depth qualitative interviews were carried out with adults living with different types of genetic condition, recruited through support groups and clinics. Interviews covered participants’ experiences of their condition and their views towards genetic intervention in reproduction. Thematic analysis of the data using Nvivo 11 was undertaken and participants were assigned categorises as either supporting, not-supporting, or having ambivalent views.
Results: The majority of participants (65%) expressed either disapproval of, or held ambivalent views towards, selective reproduction. Key reasons for non-support included regarding genetic impairment as part of personal identity and the prioritisation of social and environmental barrier removal. Key reasons for support of selective reproduction included negative and externalising attitudes towards genetic impairment and a belief in the importance of informed reproductive decision-making.
Conclusion: The degree to which participants identified with their impairment, more so than how they valued it, was significant in determining attitudes towards selective reproduction. Those who supported genetic screening viewed their impairment as separate to themselves, whilst participants who considered their impairment as integral to their identity were most likely to report ambivalence or negative attitudes. Policy makers and stakeholders considering the role of genetic carrier screening panels might usefully engage with adults affected by heritable disease as well as disability identity politics when considering the acceptability and social impact of genetic screening programmes.
| Item Type: | Journal Article | |||||||||
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| Subjects: | H Social Sciences > HV Social pathology. Social and public welfare R Medicine > RG Gynecology and obstetrics |
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| Divisions: | 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 disorders, Genetic screening, Prenatal diagnosis, People with disabilities -- Attitudes, Human reproductive technology, Identity (Psychology) | |||||||||
| Journal or Publication Title: | Molecular Genetics & Genomic Medicine | |||||||||
| Publisher: | Wiley | |||||||||
| ISSN: | 2324-9269 | |||||||||
| Official Date: | November 2018 | |||||||||
| Dates: |
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| Volume: | 6 | |||||||||
| Number: | 6 | |||||||||
| Page Range: | pp. 941-956 | |||||||||
| DOI: | 10.1002/mgg3.463 | |||||||||
| Status: | Peer Reviewed | |||||||||
| Publication Status: | Published | |||||||||
| Access rights to Published version: | Open Access (Creative Commons) | |||||||||
| Date of first compliant deposit: | 23 July 2018 | |||||||||
| Date of first compliant Open Access: | 18 September 2018 | |||||||||
| RIOXX Funder/Project Grant: |
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