Abstract
Misconceptions about basic genetic concepts and inheritance patterns may be widespread in the general population. This paper investigates understandings of genetics, illness causality and inheritance among British Pakistanis referred to a UK genetics clinic. During participant observation of genetics clinic consultations and semi-structured interviews in Urdu or English in respondents’ homes, we identified an array of environmental, behavioral and spiritual understandings of the causes of medical and intellectual problems. Misconceptions about the location of genetic information in the body and of genetic mechanisms of inheritance were common, reflected the range of everyday theories observed for White British patients and included the belief that a child receives more genetic material from the father than the mother. Despite some participants’ conversational use of genetic terminology, some patients had assimilated genetic information in ways that conflict with genetic theory with potentially serious clinical consequences. Additionally, skepticism of genetic theories of illness reflected a rejection of a dominant discourse of genetic risk that stigmatizes cousin marriages. Patients referred to genetics clinics may not easily surrender their lay or personal theories about the causes of their own or their child’s condition and their understandings of genetic risk. Genetic counselors may need to identify, work with and at times challenge patients’ understandings of illness causality and inheritance.
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Acknowledgements
This research was supported by a grant awarded to Alison Shaw from the Wellcome Trust UK (GR063078MA) and was prospectively reviewed and approved by the relevant NHS local research ethics committee. We are grateful to colleagues at the Regional Hospital for issuing Alison Shaw with an honorary clinical contract for her research role as a medical anthropologist. We thank our colleagues in the Regional Genetics Service for their support of this research. We thank the editor and two anonymous reviewers for the Journal of Genetic Counseling for their comments and suggestions for revising this paper. Above all, we thank all of the families who participated in this study.
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Shaw, A., Hurst, J.A. “What is this Genetics, Anyway?” Understandings of Genetics, Illness Causality and Inheritance Among British Pakistani Users of Genetic Services. J Genet Counsel 17, 373–383 (2008). https://doi.org/10.1007/s10897-008-9156-1
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DOI: https://doi.org/10.1007/s10897-008-9156-1