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Predictive testing for Huntington's disease: II. Qualitative findings from a study of uptake in South Wales
Author(s) -
Binedell Julia,
Soldan Jo R,
Harper Peter S
Publication year - 1998
Publication title -
clinical genetics
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.543
H-Index - 102
eISSN - 1399-0004
pISSN - 0009-9163
DOI - 10.1111/j.1399-0004.1998.tb03769.x
Subject(s) - predictive testing , genetic testing , genetic counseling , population , risk assessment , cohort , test (biology) , psychology , disease , carrier testing , clinical psychology , medicine , social psychology , family medicine , gerontology , environmental health , genetics , biology , pathology , pregnancy , paleontology , fetus , computer security , prenatal diagnosis , computer science
Semi‐structured interviews were conducted with a cohort of 22 test applicants who requested Huntington's disease (HD) predictive testing in South Wales, and a random sample of 32 non‐requesters, drawn from the South Wales HD register. Apart from identifying differences between the groups, the study afforded the opportunity to listen, at length, to at‐risk individuals' accounts of living at risk and their thoughts about predictive testing and genetic services. Emergent themes included difficulties in family communication and the uncertainties inherent in being at risk and undergoing testing. Important factors in decision making about testing were: moral imperatives to clarify one's genetic status; views about the controllability of the future; family attitudes and norms; and the impact of a test result on family members. At‐risk individuals' perceptions of the genetics service were that contact with the service would result in pressure to be tested and a need for test applicants to present a favourable view of coping capacities to secure testing. In addition, there was an expectation of ongoing contact with HD families at the initiative of the service providers. Implications of the findings for the way in which predictive testing services are structured and introduced to the at‐risk population are discussed.