NDLI: Responding to the increased genetic risk associated with customary consanguineous marriage among minority ethnic populations: lessons from local innovations in England

Please wait, while we are loading the content...

Responding to the increased genetic risk associated with customary consanguineous marriage among minority ethnic populations: lessons from local innovations in England

Counsellee’s experience of cancer genetic counselling with pedigrees that automatically incorporate genealogical and cancer database information

Why do pregnant women accept or decline prenatal diagnosis for Down syndrome?

Carrier screening for beta-thalassemia in the Maldives: perceptions of parents of affected children who did not take part in screening and its consequences

Successful implementation of Lynch syndrome screening in a safety net institution

Journal of Community Genetics : Volume 7, Issue 2, April 2016

Journal of Community Genetics : Volume 7, Issue 1, January 2016

Journal of Community Genetics : Volume 6

Journal of Community Genetics : Volume 5

Journal of Community Genetics : Volume 4

Journal of Community Genetics : Volume 3

Journal of Community Genetics : Volume 2

Journal of Community Genetics : Volume 1

Responding to the increased genetic risk associated with customary consanguineous marriage among minority ethnic populations: lessons from local innovations in England

Content Provider	Springer Nature Link
Author	Salway, Sarah Ali, Parveen Ratcliffe, Giles Such, Elizabeth Khan, Nasaim Kingston, Helen Quarrell, Oliver
Copyright Year	2016
Abstract	Populations practising customary consanguineous marriage have a higher incidence of autosomal recessive genetic disorders than those in which reproductive partners are usually unrelated. In the absence of any national-level response, English service developments to address the additional needs of families living with or at risk of such disorders have been locally led. These interventions remain in their infancy here, as elsewhere in Europe, and important questions remain regarding how appropriate, effective and sustainable responses can be operationalised in practice. This formative service review employed four local case studies together with wider consultation exercises over a 4-year period (2011–2015) to document recent responses to this area of need, issues arising and lessons to inform future work. Service components included the following: enhancements to genetic services to provide family-centred, culturally competent approaches to counselling and testing; community genetic literacy approaches; and capacity development among health professionals. Local approaches were, however, very varied in their detail, scope, level of investment and longevity. The provisions of culturally competent genetic counselling services and community-level genetic literacy interventions were generally well received by those who accessed them. Coordinated action across all service components appeared important for an effective service, but healthcare professionals, particularly general practitioners, were often difficult to engage in this agenda. An evaluative culture and engagement in a wider community of practice had supported service development across sites. However, sustaining investment was challenging, particularly where new services were not well integrated into core provision and where commissioning was driven by expectations of short-term reductions in infant mortality and disability.
Starting Page	215
Ending Page	228
Page Count	14
File Format	PDF
ISSN	1868310X
Journal	Journal of Community Genetics
Volume Number	7
Issue Number	3
e-ISSN	18686001
Language	English
Publisher	Springer Berlin Heidelberg
Publisher Date	2016-06-16
Publisher Place	Berlin, Heidelberg
Access Restriction	One Nation One Subscription (ONOS)
Subject Keyword	Autosomal recessive genetic conditions Consanguinity Cousin marriage Formative service review Ethnic health inequalities Human Genetics Public Health Epidemiology Gene Therapy Gene Function
Content Type	Text
Resource Type	Article
Subject	Public Health, Environmental and Occupational Health Epidemiology Genetics (clinical)

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

Responding to the increased genetic risk associated with customary consanguineous marriage among minority ethnic populations: lessons from local innovations in England

Addressing key issues in the consanguinity-related risk of autosomal recessive disorders in consanguineous communities: lessons from a qualitative study of British Pakistanis

Developing and evaluating a culturally appropriate genetic service for consanguineous South Asian families

Recessive disorders and consanguineous marriage.

Addressing key issues in the consanguinity-related risk of autosomal recessive disorders in consanguineous communities: lessons from a qualitative study of British Pakistanis

Lessons from Genetic Studies of Primary Immunodeficiencies in a Highly Consanguineous Population

Autosomal recessive disease in children of consanguineous parents: inferences from the proportion of compound heterozygotes

Community engagement and education: addressing the needs of South Asian families with genetic disorders

A study of consanguineous marriage as a risk factor for developing comitant strabismus

Responding to the increased genetic risk associated with customary consanguineous marriage among minority ethnic populations: lessons from local innovations in England

Similar Documents

Responding to the increased genetic risk associated with customary consanguineous marriage among minority ethnic populations: lessons from local innovations in England

Addressing key issues in the consanguinity-related risk of autosomal recessive disorders in consanguineous communities: lessons from a qualitative study of British Pakistanis

Developing and evaluating a culturally appropriate genetic service for consanguineous South Asian families

Recessive disorders and consanguineous marriage.

Addressing key issues in the consanguinity-related risk of autosomal recessive disorders in consanguineous communities: lessons from a qualitative study of British Pakistanis

Lessons from Genetic Studies of Primary Immunodeficiencies in a Highly Consanguineous Population

Autosomal recessive disease in children of consanguineous parents: inferences from the proportion of compound heterozygotes

Community engagement and education: addressing the needs of South Asian families with genetic disorders

A study of consanguineous marriage as a risk factor for developing comitant strabismus

Responding to the increased genetic risk associated with customary consanguineous marriage among minority ethnic populations: lessons from local innovations in England