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.
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 k...
| Publicado en: | Journal of Genetic Counseling Vol. 29; no. 6; pp. 1026 - 1041 |
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| Autores principales: | , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Wiley-Blackwell
Dec2020
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=147378991&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 147378991 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10597700 41A jtl: Journal of Genetic Counseling issn: 10597700 maglogo: N pubinfo: dt: Dec2020 vid: 29 iid: 6 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 147378991 147378991 147378991 10.1002/jgc4.1231 147378991 ppf: 1026 ppct: 15 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: 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. aug: au: Boardman, Felicity K. Clark, Corinna Jungkurth, Elsita Young, Philip J. affil: Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, UK sug: subj: Culture Genetic Screening Psychosocial Factors Thalassemia Diagnosis Life Experiences Evaluation Patient Attitudes Evaluation Heterozygote Family Attitudes Evaluation Prepregnancy Care Prenatal Care Genetic Screening In Infancy and Childhood Human Multimethod Studies United Kingdom Interviews Descriptive Statistics Pregnancy Female Religion and Religions Infant, Newborn Early Diagnosis Stigma Health Beliefs Decision Making Persons with Disabilities Genetic Counseling Thalassemia Risk Factors Genetic Screening Ethical Issues Thalassemia Psychosocial Factors Adolescence Adult Middle Age Aged Infant, Newborn: birth-1 month Adolescent: 13-18 years Adult: 19-44 years Middle Aged: 45-64 years Aged: 65+ years Female ab: 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. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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