Public support for healthcare-mediated disclosure of hereditary cancer risk information: Results from a population-based survey in Sweden

Abstract

Background Targeted surveillance of at-risk individuals in families with increased risk of hereditary cancer is an effective prevention strategy if relatives are identified, informed and enrolled in screening programs. Despite the potential benefits, many eligible at-risk relatives remain uninformed of their cancer risk. This study describes the general public’s opinion on disclosure of hereditary colorectal cancer (CRC) risk information, as well as preferences on the source and the mode of information. Methods A random sample of the general public was assessed through a Swedish citizen web-panel. Respondents were presented with scenarios of being an at-risk relative in a family that had an estimated increased hereditary risk of CRC; either 10% (moderate) or 70% (high) lifetime risk. A colonoscopy was presented as a preventive measure. Results were analysed to identify significant differences between groups using the Pearson’s chi-square (χ2) test. Results Of 1800 invited participants, 977 completed the survey (54%). In the moderate and high-risk scenarios, 89.2 and 90.6% respectively, would like to receive information about a potential hereditary risk of CRC (χ2, p = .755). The desire to be informed was higher among women (91.5%) than men (87.0%, χ2, p = .044). No significant differences were found when comparing different age groups, educational levels, place of residence and having children or not. The preferred source of risk information was a healthcare professional in both moderate and high-risk scenarios (80.1 and 75.5%). However, 18.1 and 20.1% respectively would prefer to be informed by a family member. Assuming that healthcare professionals disclosed the information, the favoured mode of information was letter and phone (38.4 and 33.2%). Conclusions In this study a majority of respondents wanted to be informed about a potential hereditary risk of CRC and preferred healthcare professionals to communicate this information. The two presented levels of CRC lifetime risk did not significantly affect the interest in being informed. Our data offer insights into the needs and preferences of the Swedish population, providing a rationale for developing complementary healthcare-assisted communication pathways to realise the full potential of targeted prevention of hereditary CRC.

A Focus Group Study of Perceptions of Genetic Risk Disclosure in Members of the Public in Sweden: “I’ll Phone the Five Closest Ones, but What Happens to the Other Ten?”

“…This "missing link" has been the topic of an ongoing debate for years, if The idea that genetic risks should be handled more systematically by healthcare is not unique to our participants or context. Our research group has previously reported a strong public opinion in Sweden in favor of healthcare-mediated disclosure [29] but results from other counties support this as well. US respondents thought "direct contact should be a programmatic effort" [31], Australian patients thought that "information on screening should be disseminated through medical professionals" [52] and a recent Dutch systematic review on patient attitudes concluded that "actively offered support of healthcare professionals was desired" [36].…”

“…A growing body of research indicates that a large majority of people in general want to receive actionable genetic risk information, and the "right to know" is something most people feel strongly about [25][26][27][28]. Public attitudes towards cancer genetic testing are also very positive [29,30], and high acceptance for direct contact approaches where healthcare professionals (HCPs) approach eligible relatives has been reported in Denmark, Sweden, France and the US [29][30][31][32]. Factors associated with the desire to be informed of a genetic risk include the emotional relief when reducing uncertainty and the clinical usefulness of individual test results [25,28,33,34].…”

Feasibility, acceptability, and limited efficacy of health system-led familial risk notification: protocol for a mixed-methods evaluation

“…Another study [ 6 ] conducted in the Netherlands found that health system-led outreach about cascade screening for familial hypercholesterolemia was acceptable to relatives and led to high acceptance of screening. Other studies of health system-led direct contact have found similar results and acceptability levels among patients in Finland [ 7 ], the UK [ 8 ], and Sweden [ 9 ].…”

“…Cascade testing is the process of case-finding within families by notifying at-risk relatives and inviting them to consider genetic testing. Studies outside of the USA have shown that health system-led direct contact interventions are acceptable to patients and families and notify more relatives than patient-led contact alone [5][6][7][8][9].…”

Cancer Worry Distribution and Willingness to Undergo Colonoscopy at Three Levels of Hypothetical Cancer Risk—A Population-Based Survey in Sweden

“…Two electronic reminders were sent to non-responders on days 6 and 14 after initial survey distribution. Our questions were part of a larger set of questions with which we have previously reported on the public’s attitudes towards hereditary cancer risk communication [ 20 ].…”