title: Associations between anticipated reactions to genetic test results and interest in genetic testing: will self-selection reduce the potential for harm?
abstract: The proliferation of genetic susceptibility tests for complex diseases away from clinic settings increases the potential for harm. This study assessed whether people are likely to self-select themselves into or out of genetic testing depending on whether they believe they could cope with the results. Associations between anticipated reactions to adverse genetic test results and interest in taking genetic tests for cancer and heart disease were examined in a community sample of English adults (n = 1,024). Interest in genetic testing overall was 78% for cancer risk and 80% for heart disease risk. As predicted, there were differences by anticipated reactions. People who anticipated regret about having taken a genetic test for cancer risk expressed lower interest than those who did not anticipate regret (46% vs. 89%), and people who anticipated being glad to know of increased risk status (i.e., reduced uncertainty) were more interested than those who did not look forward to reduced uncertainty (91% vs. 22%). Patterns were similar for heart disease ("regret" 66% vs. 87%; "reduced uncertainty" 87% vs. 38%). The potential for harm from future genetic susceptibility tests may be less than feared if people who anticipate adverse reactions self-select themselves out of testing. However, given that a significant proportion of people who anticipated adverse reactions also expressed interest in testing, there is still a concern about safety. It remains to be seen whether the same patterns emerge in studies that actually offer genetic tests for common gene variants in community settings.
authors.affiliation: Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, 31 Center Drive, Building 31, Room B1B37C, Bethesda, MD 20892, USA. sandersons@mail.nih.gov
authors.forename: Saskia C
authors.initials: SC
authors.lastname: Sanderson
authors.forename: Jane
authors.initials: J
authors.lastname: Wardle
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D004739:England; D005260:Female; D020022:Genetic Predisposition to Disease; D005821:Genetic Techniques / Q000523:psychology*; D040261:Harm Reduction; D006331:Heart Diseases / Q000235:genetics / Q000523:psychology; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000235:genetics / Q000523:psychology; D011795:Surveys and Questionnaires