Epigenetic Risk Assessment of Female Cancers: Women’s Information Needs and Attitudes

BACKGROUND: Cancer risk assessment should stratify screening and enable preventive health interventions based on individuals' risk of developing cancer. Studies are underway to develop epigenetic tests, including trials investigating women's risk of female-specific cancers. OBJECTIVE: Given potential consequences for quality of life and care, women considering such assessment need to be able to make a fully informed choice. It is currently unknown what information they require. METHOD: We conducted 4 focus groups with 25 women (aged 30-65 years) to explore what they want to know about epigenetic cancer risk assessment, how they evaluate its usefulness, and how they would like to be informed about their risk. Independent coders categorised paraphrases based on transcribed recordings of the group discussions to enable a summarising text analysis. RESULTS: The women in the study wanted to understand how the epigenetic approach is different from established genomic tests, how epigenetic changes relate to cancer, and whether the test enables monitoring of one's cancer risk (n = 11). Furthermore, they desired information about their basic cancer risks (n = 11), about the quality of the assessment (n = 9), and about measures to deal with a risk result (n = 11). CONCLUSIONS: Informed consent in epigenetic cancer risk assessments depends on whether basic cancer risks, uncertainties of testing, and effects of tests on care management are transparently communicated prior to testing. These requirements are not limited to epigenetic testing. Accordingly, physicians and health authorities will have to provide multi-layered information when counselling women on cancer risk assessment.