title: 'I don't see any point in telling them': attitudes to sharing genetic information in the family and carrier testing of relatives among British Pakistani adults referred to a genetics clinic.
abstract: The sharing of genetic information following the diagnosis of a genetic condition can be important for managing familial risks for genetic conditions. This paper explores factors that impede or facilitate the sharing of genetic information within a sample of British Pakistani families. It draws from research investigating understandings of genetics and inheritance, attitudes to prenatal diagnosis and risk communication in the family that used methods of participant observation and interview with adults from 66 families of Pakistani origin referred to a genetics clinic in southern England. We found a lack of English often restricted one partner's access to genetic information and partners fluent in English sometimes withheld information to protect a partner (usually the wife) from blame, stigma or feelings of marital insecurity. Many couples felt genetic information was private to them as a couple and were unwilling to share it with the wider family, commenting on its potentially stigmatizing and emotionally and socially disruptive effects on themselves, their child and their marriage, as well as on the marriage prospects of other family members. Those who sought carrier testing because of a family history did so when considering their own marriage or parenting, sometimes on the insistence of an affected relative, but did not readily discuss carrier testing with other relatives. Despite the complex consanguinity in some families, a family-based approach to risk management is not necessarily any easier among British Pakistanis than other ethnic groups.
authors.affiliation: Department of Public Health and Primary Care, University of Oxford, Oxford, UK. Alison.Shaw@dphpc.ox.ac.uk
authors.forename: Alison
authors.initials: A
authors.lastname: Shaw
authors.forename: Jane A
authors.initials: JA
authors.lastname: Hurst
mesh_terms: D000328:Adult; D000554:Ambulatory Care Facilities; D001294:Attitude to Health / Q000208:ethnology*; D003142:Communication; D003241:Consanguinity; D003430:Cross-Sectional Studies; D003466:Cultural Characteristics; D054242:Emigrants and Immigrants; D005260:Female; D030342:Genetic Diseases, Inborn / Q000208:ethnology / Q000517:prevention & control*; D030661:Genetic Privacy; D005820:Genetic Testing / Q000592:standards* / Q000639:trends; D006579:Heterozygote; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D010154:Pakistan / Q000208:ethnology; D010375:Pedigree; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000379:methods; D006113:United Kingdom