The public favours healthcare-mediated disclosure of hereditary CRC risk: A population-based survey in Sweden

Andreas Andersson1, Carolina Hawranek1, Anna Öfverholm2, Hans Ehrencrona3, Kalle Grill4, Senada Hajdarevic5, Beatrice Melin1, Emma Tham6, Barbro Numan-Hellqvist1, Anna Rosén1

1Oncology, Radiation science, Umeå University, Sweden. 2Clinical Sciences, University of Gothenburg, Sweden. 3Clinical genetics, Laboratory Medicine, Lund university, Sweden. 4Historical, Philosophical and Religious Studies, Umeå University, Sweden. 5Nursing, Umeå University, Sweden. 6Molecular Medicine and Surgery, Karolinska Institute, Sweden


Objective: To describe public opinion on interest in receiving risk information on hereditary colorectal cancer (CRC) risk, as well as preferences on the source and the mode of information.

Methods: A random sample of the general public was addressed through a Swedish citizen web-panel during October 2018. Respondents were faced with scenarios of being an at-risk relative in a family that had an estimated increased hereditary risk of CRC; either 10% or 70% lifetime risk. Regular colonoscopy was presented as a preventive measure to individuals at risk.

Results: Out of 1800 invited, 977 responded (54%). For the scenario of 10% and 70% CRC-risk, 89.2%, and 90.6% respectively, would like to receive information about the investigation (χ2, p=0.755). Interest in receiving information was higher among women (91.5%) as compared to men (87.0%, χ2, p=0.044). No significant differences could be seen when comparing different age groups, educational levels, place of residence and having children or not.

The preferred source of risk information, in both 10% or 70% CRC-risk scenarios, was healthcare (80,1% and 75,5%). However, 18,1% and 20.1% respectively, would prefer to be informed by a family member.

 Conclusion: In this study a majority wanted to be informed about a completed cancer genetic investigation and they preferred health care professionals to mediate this information.  The two presented levels of CRC-lifetime risk did not significantly affect the interest in being informed.