{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T21:09:13Z","timestamp":1790370553207,"version":"4.1.0"},"reference-count":54,"publisher":"SAGE Publications","issue":"5","license":[{"start":{"date-parts":[[2002,9,1]],"date-time":"2002-09-01T00:00:00Z","timestamp":1030838400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J Health Psychol"],"published-print":{"date-parts":[[2002,9]]},"abstract":"<jats:p>This article presents a tentative grounded theory, which can provide some explanation of variation in behaviour around predictive genetic testing (PGT) for Hereditary Non-Polyposis Colorectal Cancer (HNPCC), based on interviews with individuals ( n = 55) from families with a clinical diagnosis of HNPCC, 12 of whom were followed through the PGT protocol. The theory is built around a core category of engagement, a newly constructed concept reflecting the degree of cognitive and emotional involvement with cancer risk in individuals from these families, and models the psychosocial process of engaging with cancer risk. The degree of engagement at the time of testing can explain variations in approaches and reactions to PGT. A series of social factors, many related to the experiences of family life, emerged as either facilitating or blocking the process of engaging with cancer risk; a series of psychological factors emerged as interacting in a recursive, dynamic manner with each other and with engagement status. The degree of engagement can change with the unfolding of time and events in family life. The theory of engagement (TE) provides an explanatory framework for understanding behaviour related to PGT for HNPCC, and can potentially be applied to research on risk perception in the social sciences more generally. In addition, the theory may have potential uses in the genetics clinic, in identifying individuals at risk of adverse reactions to PGT for cancer, thus enabling better targeting of genetic counselling resources.<\/jats:p>","DOI":"10.1177\/1359105302007005628","type":"journal-article","created":{"date-parts":[[2003,4,28]],"date-time":"2003-04-28T06:56:27Z","timestamp":1051512987000},"page":"491-508","source":"Crossref","is-referenced-by-count":47,"title":["Predictive Genetic Testing and Beyond: A Theory of Engagement"],"prefix":"10.1177","volume":"7","author":[{"given":"Marion","family":"Mcallister","sequence":"first","affiliation":[{"name":"Centre for Family Research, University of Cambridge, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2002,9,1]]},"reference":[{"key":"atypb1","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.37.2.108"},{"key":"atypb2","doi-asserted-by":"publisher","DOI":"10.1177\/109019817400200407"},{"key":"atypb3","doi-asserted-by":"publisher","DOI":"10.1001\/jama.1993.03500150082032"},{"key":"atypb4","doi-asserted-by":"publisher","DOI":"10.1111\/j.1399-0004.1998.tb03768.x"},{"key":"atypb5","doi-asserted-by":"publisher","DOI":"10.1111\/j.1399-0004.1998.tb03769.x"},{"key":"atypb6","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.1320320215"},{"key":"atypb7","doi-asserted-by":"publisher","DOI":"10.1038\/sj.ejhg.5200532"},{"key":"atypb8","volume-title":"Predicting health behaviour","author":"Conner, M.","year":"1996"},{"key":"atypb9","doi-asserted-by":"publisher","DOI":"10.1038\/sj.bjc.6690078"},{"key":"atypb10","first-page":"897","volume":"36","author":"Decruyenaere, M.","year":"1999","journal-title":"Journal of Medical Genetics"},{"key":"atypb11","unstructured":"Downing, C. (2001). Reproductive decision-making in families at risk for Huntington\u2019s disease: Perceptions of responsibility.\n                      PhD Thesis\n                      : University of Cambridge."},{"key":"atypb12","unstructured":"Dudok de Wit, A. C. (1997). To know or not to know: The psychological implications of presymptomatic DNA testing for autosomal dominant inheritable late onet disorders.\n                      PhD Thesis\n                      : Erasmus University of Rotterdam."},{"key":"atypb13","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.34.9.746"},{"key":"atypb14","volume-title":"Anxiety: The cognitive perspective","author":"Eysenck, M. W.","year":"1992"},{"key":"atypb15","first-page":"377","volume":"8","author":"Geller, G.","year":"1999","journal-title":"Cancer Epidemiology, Biomarkers and Prevention"},{"key":"atypb16","first-page":"329","volume":"8","author":"Glanz, K.","year":"1999","journal-title":"Cancer Epidemiology, Biomarkers and Prevention"},{"key":"atypb17","volume-title":"The discovery of grounded theory","author":"Glaser, B. G.","year":"1967"},{"key":"atypb18","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.37.3.192"},{"key":"atypb19","volume-title":"The explanation of social behaviour","author":"Harr\u00e9, R.","year":"1972"},{"key":"atypb20","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.1320420417"},{"key":"atypb21","volume-title":"Psychological stress","author":"Janis, I. L.","year":"1958","edition":"2"},{"key":"atypb22","doi-asserted-by":"publisher","DOI":"10.1037\/0022-3514.45.1.20"},{"key":"atypb23","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.1320310316"},{"key":"atypb24","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.1320540302"},{"key":"atypb25","doi-asserted-by":"publisher","DOI":"10.1111\/j.1545-5300.1989.00059.x"},{"key":"atypb26","doi-asserted-by":"publisher","DOI":"10.1037\/0003-066X.37.9.1019"},{"key":"atypb27","doi-asserted-by":"publisher","DOI":"10.1093\/oso\/9780195069945.001.0001"},{"key":"atypb28","doi-asserted-by":"publisher","DOI":"10.1002\/(SICI)1097-0215(19960220)69:1<58::AID-IJC15>3.0.CO;2-G"},{"key":"atypb29","doi-asserted-by":"publisher","DOI":"10.1001\/jama.1996.03530480027036"},{"key":"atypb30","doi-asserted-by":"publisher","DOI":"10.1037\/0022-006X.65.3.414"},{"key":"atypb31","first-page":"19","volume-title":"Perceptions of health and illness","author":"Leventhal, H.","year":"1997"},{"key":"atypb32","first-page":"7","volume":"2","author":"Leventhal, H.","year":"1980","journal-title":"Medical Psychology"},{"key":"atypb33","doi-asserted-by":"publisher","DOI":"10.1002\/(SICI)1097-0142(19970601)79:11<2219::AID-CNCR21>3.0.CO;2-Y"},{"key":"atypb34","first-page":"987","volume":"6","author":"Lynch, H. T.","year":"1997","journal-title":"Cancer Epidemiology, Biomarkers and Prevention"},{"key":"atypb35","doi-asserted-by":"publisher","DOI":"10.1037\/0021-843X.100.4.478"},{"key":"atypb36","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.297.6654.972"},{"key":"atypb37","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.35.9.739"},{"key":"atypb38","unstructured":"McAllister, M. (1999). Predictive testing for hereditary non-polyposis colorectal cancer (HNPCC): A theory of engagement.\n                      PhD Thesis:\n                      University of Cambridge."},{"key":"atypb39","doi-asserted-by":"publisher","DOI":"10.1023\/A:1016628408498"},{"key":"atypb40","doi-asserted-by":"publisher","DOI":"10.1017\/CBO9780511570049.006"},{"key":"atypb41","doi-asserted-by":"publisher","DOI":"10.1080\/08870449608401982"},{"key":"atypb42","doi-asserted-by":"publisher","DOI":"10.1016\/0005-7967(91)90130-U"},{"key":"atypb43","doi-asserted-by":"publisher","DOI":"10.1016\/0005-7967(89)90001-6"},{"key":"atypb44","volume-title":"Cognition and emotion: From order to disorder","author":"Power, M.","year":"1997"},{"key":"atypb45","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(00)00248-3"},{"key":"atypb46","doi-asserted-by":"publisher","DOI":"10.1177\/135910530000500102"},{"key":"atypb47","doi-asserted-by":"publisher","DOI":"10.1017\/CBO9780511570049.014"},{"key":"atypb48","volume-title":"Families, illness & disability","author":"Rolland, J. S.","year":"1994"},{"key":"atypb49","doi-asserted-by":"crossref","first-page":"409","DOI":"10.1177\/109019817400200407","volume":"2","author":"Rosenstock, I. M.","year":"1974","journal-title":"Health Education Monographs"},{"key":"atypb50","volume-title":"ATLASti Visual qualitative data; analysis, management. Model-building in education research and business: Short user\u2019s manual","author":"Scolari Scientific Software Development","year":"1997"},{"key":"atypb51","volume-title":"Qualitative analysis for social scientists","author":"Strauss, A.","year":"1989"},{"key":"atypb52","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.1320480305"},{"key":"atypb53","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.1320480209"},{"key":"atypb54","doi-asserted-by":"publisher","DOI":"10.1023\/A:1011590617833"}],"container-title":["Journal of Health Psychology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/1359105302007005628","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/1359105302007005628","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T08:34:10Z","timestamp":1777451650000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/1359105302007005628"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2002,9]]},"references-count":54,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2002,9]]}},"alternative-id":["10.1177\/1359105302007005628"],"URL":"https:\/\/doi.org\/10.1177\/1359105302007005628","relation":{},"ISSN":["1359-1053","1461-7277"],"issn-type":[{"value":"1359-1053","type":"print"},{"value":"1461-7277","type":"electronic"}],"subject":[],"published":{"date-parts":[[2002,9]]}}}