Decision-Making and Ante-Natal Screening for Sickle Cell and Thalassaemia Disorders

Atkin, Karl; Ahmed, Shenaz; Hewison, Jenny; Green, Josephine M.

doi:10.1177/0011392107084380

Cited by 37 publications

(40 citation statements)

References 34 publications

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“…In such situations, termination of an affected pregnancy can be offered as a therapeutic intervention. Muslim families have often been denied this service on the basis of a prevalent professional opinion that Islam forbids termination (Modell et al 2000;Atkin et al 2008). Our participants, however, expressed a range of opinions and interpretations, as Muslims, about the acceptability of termination of pregnancy.…”

Section: Discussionmentioning

confidence: 96%

“…Other studies have noted a complex attitude towards such fatwas that have emanated from countries outside the UK. Their applicability in the context of a different health care system in the UK is questioned by some community members (Atkin et al 2008). This suggests a need for relevant UK Muslim bodies to examine the issue from a UK perspective.…”

Section: Discussionmentioning

confidence: 99%

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Examining the family-centred approach to genetic testing and counselling among UK Pakistanis: a community perspective

et al. 2012

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WHO advice suggests a family-centred approach for managing the elevated risk of recessively inherited disorders in consanguineous communities, whilst emerging policy recommends community engagement as an integral component of genetic service development. This paper explores the feasibility of the family-centred approach in the UK Pakistani origin community. The study took place within a context of debate in the media, professional and lay circles about cousin marriage causing disability in children. Using qualitative methods, a total of six single-sex focus group discussions (n050) were conducted in three UK cities with a high settlement of people of Pakistani origin. Tape-recorded transcripts were analysed using framework analysis. Kinship networks within Pakistani origin communities are being sustained and marriage between close blood relatives continues to take place alongside other marriage options. Study participants were critical of what was perceived as a prevalent notion that cousin marriage causes disability in children. They were willing to discuss cousin marriage and disability, share genetic information and engage with genetic issues. A desire for accurate information and a public informed about genetic issues was articulated whilst ineffective communication of genetic risk information undermined professionals in their support role. This study suggests a community that is embracing change, one in which kinship networks are still active and genetic information exchange is taking place. At the community level, these are conditions supportive of the family-centred approach to genetic testing and counselling.

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Section: Discussionmentioning

confidence: 96%

Section: Discussionmentioning

confidence: 99%

Examining the family-centred approach to genetic testing and counselling among UK Pakistanis: a community perspective

et al. 2012

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“…Disentangling social, faith and cultural influences is not straightforward, but perhaps reflects the complexity of how people express their religious belief in their everyday lives. This makes it an important consideration, when developing holistic care (Atkin et al, 2008).…”

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confidence: 99%

Self-Management of Chronic Pain: The Role of Religious Faith

Edwards

Briggs

Closs

et al. 2016

Journal of Disability & Religion

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Self-management forms an essential part of the management of chronic pain. It affects approximately 7.8 million people in the UK with older people more likely to suffer chronic pain. In the UK, the National Health Service is committed to providing patient centred care, which embraces the religious and spiritual needs of patients. This aspect of care is governed by uncertainly and there is a lack of understanding about the influence of religious faith on illness and no clear guidance on how faith needs are best addressed. This study explored the inter-relationships between chronic pain and religious faith amongst older people.

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“…An interpretive analysis is needed in order to better understand the ways in which social and ethical considerations involved in community genetics acquire situated meanings within institutional and political contexts. It is also required for realizing the different meanings of genetic testing for the participants, and the different arenas (public and private) in which these meanings are negotiated within the community or the network of individuals and families that are affected by genetic risk (see for example Atkin et al 2008;Pilnick 2002;McAllister 2001;Featherstone et al 2006;Raz 2005).…”

Section: Methodology and Implementationmentioning

confidence: 99%

Commentary: a sociologist's view on community genetics

Raz

2010

J Community Genet

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This commentary illustrates and discusses potential research directions for sociologists and anthropologists interested in the field of community genetics and its emerging networks of individuals genetically at risk. Community genetics-the application of medical genetics in community settings for the benefit of individuals-also involves social issues of lay-professional misunderstandings (and more recently also the different perspectives of various expert communities), stigmatization, discrimination, and medicalization. Focusing on a socio-anthropological perspective regarding the views and disagreements surrounding the definition and scope of community genetics, I overview several epistemological, methodological, and practical contributions that such perspective can offer to the study of community genetics.

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Decision-Making and Ante-Natal Screening for Sickle Cell and Thalassaemia Disorders

Abstract: Article

Cited by 37 publications

References 34 publications

Examining the family-centred approach to genetic testing and counselling among UK Pakistanis: a community perspective

Examining the family-centred approach to genetic testing and counselling among UK Pakistanis: a community perspective

Self-Management of Chronic Pain: The Role of Religious Faith

Commentary: a sociologist's view on community genetics

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