Epigenetic Risk Assessment of Female Cancers: Women's Information Needs and Attitudes.
Epigenetic cancer risk assessment
Focus groups
Risk testing
Testing information needs
Journal
Public health genomics
ISSN: 1662-8063
Titre abrégé: Public Health Genomics
Pays: Switzerland
ID NLM: 101474167
Informations de publication
Date de publication:
2019
2019
Historique:
received:
16
02
2019
accepted:
07
07
2019
pubmed:
5
9
2019
medline:
21
1
2020
entrez:
5
9
2019
Statut:
ppublish
Résumé
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. 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. 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. 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). 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.
Sections du résumé
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.
Identifiants
pubmed: 31484180
pii: 000501975
doi: 10.1159/000501975
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
46-57Informations de copyright
© 2019 S. Karger AG, Basel.