title: Choosing not to undergo predictive genetic testing for hereditary colorectal cancer syndromes: expanding our understanding of decliners and declining.
abstract: While medical research continues to investigate the genetic basis of cancer, and personalised prevention gains momentum, little research has been conducted with the individuals who decline predictive genetic testing for cancer. We recruited individuals who had been offered genetic testing for Lynch syndrome or bi-allelic MUTYH mutations due to their participation in a large, population-based, Australia-wide colorectal cancer study. Thirty-three individuals in mutation-carrying families, unaffected by cancer, who had actively or passively declined testing at one of four decision-making points, took part in a qualitative interview about their decision. Data analysis revealed a typology of 'decliners': (1) uninformed about genetic testing; (2) a weak intention to undergo genetic testing; (3) conditionally declining; and (4) unconditionally declining testing. In this population we found substantial barriers to achieving the benefits promised by predictive genetic testing; a lack of knowledge of the availability of genetic testing; a lack of trust in genetic test information; a desire to see a stronger benefit from genetic testing before proceeding; and a sense that there may be more negative than positive outcomes from genetic testing. These discourses must be addressed if medical research on the genetic basis of cancer continues to be funded, and personalised prevention of cancer continues to be recommended by experts.
authors.affiliation: Gender and Women's Health Unit, Centre for Health Equity, Melbourne School of Population and Global health, The University of Melbourne, 207 Bouverie St, Carlton, Melbourne, VIC, 3010, Australia. l.keogh@unimelb.edu.au.
authors.forename: Louise A
authors.identifier: http://orcid.org/0000-0003-2963-6451
authors.initials: LA
authors.lastname: Keogh
authors.affiliation: Centre for Epidemiology and Biostatistics, Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, VIC, Australia.
authors.forename: Heather
authors.initials: H
authors.lastname: Niven
authors.affiliation: Centre for Epidemiology and Biostatistics, Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, VIC, Australia.
authors.forename: Alison
authors.initials: A
authors.lastname: Rutstein
authors.affiliation: Centre for Epidemiology and Biostatistics, Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, VIC, Australia.
authors.forename: Louisa
authors.initials: L
authors.lastname: Flander
authors.affiliation: Walter and Eliza Hall Institute, Melbourne, VIC, Australia.
authors.forename: Clara
authors.initials: C
authors.lastname: Gaff
authors.affiliation: Centre for Epidemiology and Biostatistics, Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, VIC, Australia.
authors.forename: Mark
authors.initials: M
authors.lastname: Jenkins
mesh_terms: D000328:Adult; D000368:Aged; D001315:Australia; D015179:Colorectal Neoplasms / Q000235:genetics*; D003123:Colorectal Neoplasms, Hereditary Nonpolyposis / Q000235:genetics*; D045647:DNA Glycosylases / Q000235:genetics*; D005260:Female; D005820:Genetic Testing; D006801:Humans; D008297:Male; D008875:Middle Aged; D009154:Mutation; D014342:Truth Disclosure
chemical_list: D045647:DNA Glycosylases; C061738:mutY adenine glycosylase
keywords: Colorectal cancer; Decision making; Decliners; Genetic testing; Lynch syndrome; Qualitative methods