Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress 2023 EHA Congress 2023 ASCO Annual Meeting
Clinical Collections
Advances in Alzheimer’s

At a glance: The ONWARDS insulin icodec trials

A round-up of the ONWARDS phase 3 clinical trials evaluating the novel weekly insulin icodec in people with diabetes.
ADVANCED SEARCH
Log in
Top
BMC Public Health
Published in: BMC Public Health 1/2019

Open Access 01-12-2019 | Epigenetics | Research article

Women’s perception, attitudes, and intended behavior towards predictive epigenetic risk testing for female cancers in 5 European countries: a cross-sectional online survey

Authors: Odette Wegwarth, Nora Pashayan, Martin Widschwendter, Felix G. Rebitschek

Published in: BMC Public Health | Issue 1/2019

Login to get access

Abstract

Background

Epigenetic markers might be used for risk-stratifying cancer screening and prevention programs in the future. Although the clinical utility of consequent epigenetic tests for risk stratification is yet to be proven, successful adoption into clinical practice also requires the public’s acceptance of such tests. This cross-sectional online survey study sought to learn for the first time about European women’s perceptions, attitudes, and intended behavior regarding a predictive epigenetic test for female cancer (breast, ovarian, cervical, and endometrial) risks.

Methods

1675 women (40–75 years) from five European countries (Czech Republic, Germany, United Kingdom, Italy, Sweden), drawn from online panels by the survey sampling company Harris Interactive (Germany), participated in an online survey where they first received online leaflet information on a predictive epigenetic test for female cancer risks and were subsequently queried by an online questionnaire on their desire to know their female cancer risks, their perception of the benefit-to-harm ratio of an epigenetic test predicting female cancer risks, reasons in favor and disfavor of taking such a test, and their intention to take a predictive epigenetic test for female cancer risks.

Results

Most women desired information on each of their female cancer risks, 56.6% (95% CI: 54.2–59.0) thought the potential benefits outweighed potential harms, and 75% (72.0–77.8) intended to take a predictive epigenetic test for female cancer risks if freely available. Results varied considerably by country with women from Germany and the Czech Republic being more reserved about this new form of testing than women from the other three European countries. The main reason cited in favor of a predictive epigenetic test for female cancer risks was its potential to guide healthcare strategies and lifestyle changes in the future, and in its disfavor was that it may increase cancer worry and coerce unintended lifestyle changes and healthcare interventions.

Conclusions

A successful introduction of predictive epigenetic tests for cancer risks will require a balanced and transparent communication of the benefit-to-harm ratio of healthcare pathways resulting from such tests in order to curb unjustified expectations and at the same time to prevent unjustified concerns.
Appendix
Available only for authorised users
Literature
1.
Ferlay J, Soerjomataram I, Dikshit R, Eser S, Mathers C, Rebelo M, et al. Cancer incidence and mortality worldwide: sources, methods and major patterns in GLOBOCAN 2012. Int J Cancer. 2015;136(5):E359–86.CrossRef
2.
Andriole GL, Crawford ED, Grubb RL, Buys SS, Chia D, Church TR, et al. Prostate cancer screening in the randomized prostate, lung, colorectal, and ovarian Cancer screening trial: mortality results after 13 years of follow-up. J Natl Cancer Inst. 2012;104(12):125–32.CrossRef
3.
Buys SS, Partridge E, Black A, Johnson CC, Lamerato L, Isaacs C, et al. Effect of screening on ovarian cancer mortality: the prostate, lung, colorectal and ovarian (PLCO) Cancer screening randomized controlled trial. JAMA. 2011;305(22):2295–303.CrossRef
4.
Jacobs JI, Menon U, Ryan A, Gentry-Maharaj A, Burnell M, Kalsi JK, et al. Ovarian cancer screening and mortality in the UK collaborative trial of ovarian Cancer screening (UKCTOCS): a randomised controlled trial. Lancet. 2015;387(10022):945–56.CrossRef
5.
Autier P, Boniol M, Koechlin A, Pizot C, Boniol M. Effectiveness of and overdiagnosis from mammography in the Netherlands: population based survey. Br Med J. 2017;359:j5224.CrossRef
6.
Widschwendter M, Jones A, Evans I, Reisel D, Dillner J, Sundström K, et al. Epigenome-based cancer risk prediction: rationale, opportunities and challenges. Nat Rev Clin Oncol. 2018;15:292–309.CrossRef
7.
Pashayan N, Pharoah PD, Schleutker J, Talala K, Tammela T, Maattanen L, et al. Reducing overdiagnosis by polygenic risk-stratified screening: findings from the Finnish section of the ERSPC. Br J Cancer. 2015;113(7):1086–93.CrossRef
8.
Pashayan N, Duffy SW, Neal DE, Hamdy FC, Donovan JL, Martin RM, et al. Implications of polygenic risk-stratified screening for prostate cancer on overdiagnosis. Genet Med. 2015;17(10):789–95.CrossRef
9.
Meisel SF, Pashayan N, Rahman B, Side L, Fraser L, Gessler S, et al. Adjusting the frequency of mammography screening on the basis of genetic risk: attitudes among women in the UK. Breast. 2015;24(3):237–41.CrossRef
10.
Henneman L, Vermeulen E, van El CG, Claassen L, Timmermans DR, Cornel MC. Public attitudes towards genetic testing revisited: comparing opinions between 2002 and 2010. Eur J Hum Genet. 2013;21(8):793–9.CrossRef
11.
12.
13.
Henriksen MJV, Guassora AD, Brodersen J. Preconceptions influence women’s perceptions of information on breast cancer screening: a qualitative study. BMC Res Notes. 2015;8:404.CrossRef
14.
Wegwarth O, Gigerenzer G. Overdiagnosis and overtreatment: evaluation of what physicians tell patients about screening harms. JAMA Intern Med. 2013;173(22):2086–7.CrossRef
15.
Waller J, Douglas E, Whitaker KL, Wardle J. Women's responses to information about overdiagnosis in the UK breast cancer screening programme: a qualitative study. BMJ Open. 2013;3(4):3–e002703.CrossRef
16.
Afzal UM, GL O, TR D, Jason SD. Contextualizing Counterintuitiveness: how context affects comprehension and memorability of counterintuitive concepts. Cogn Sci. 2007;31(3):415–39.CrossRef
17.
Bodemer N, Müller SM, Okan Y, Garcia-Retamero R, Neumeyer-Gromen A. Do the media provide transparent health information? A cross-cultural comparison of public information about the HPV vaccine. Vaccine. 2012;30(25):3747–56.CrossRef
18.
Neumeyer-Gromen A, Bodemer N, Müller SM, Gigerenzer G. Ermöglichen Medienberichte und Broschüren informierte Entscheidungen zur Gebärmutterhalskrebsprävention? Do media reports and public brochures facilitate informed decision making about cervical cancer prevention? Bundesgesundheitsblatt. 2011;54(11):1197–210.CrossRef
19.
Slaytor EK, Ward JE. How risks of breast cancer and benefits of screening are communicated to women: analysis of 58 pamphlets. Br Med J. 1998;317:263–4.CrossRef
20.
Kurzenhäuser S. Welche Informationen vermitteln deutsche Gesundheitsbroschüren über die screening-Mammographie? What information do German health brochures provide on mammography screening? Z Ärztl Fortbild Qualitätssich. 2003;97:53–7.PubMed
21.
Wegwarth O, Kurzenhäuser-Carstens S, Gigerenzer G. Overcoming the knowledge–behavior gap: the effect of evidence-based HPV vaccination lealfets on understanding, intention, and actual vaccination decision. Vaccine. 2014;32(12):1388–93.CrossRef
22.
Perneger TV, Agoritsas T. Doctors and patients susceptibility to framing bias: a randomized trial. J Gen Intern Med. 2011;26(11):1411–7.CrossRef
23.
Malenka DJ, Baron JA, Johansen S, Wahrenberger JW, Ross JM. The framing effect of relative and absolute risk. J Gen Intern Med. 1993;8(10):543–8.CrossRef
24.
Gigerenzer G, Gaissmaier W, Kurz-Milcke E, Schwartz LM, Woloshin S. Helping doctors and patients make sense of health statistics. Psychol Sci Public Interest. 2007;8(2):53–96.CrossRef
25.
Woloshin S, Schwartz LM. How a charity oversells mammography. Br Med J. 2012;345:e5132.CrossRef
26.
Welch HG, Schwartz LM, Woloshin S. Are increasing 5-year survival rates evidence of success against cancer? JAMA. 2000;283(22):2975–8.CrossRef
27.
Steckelberg A, Hülfenhaus C, Haastert B, Mühlhauser I. Effect of evidence based risk communication on "informed choice" in colorectal cancer screening: randomised controlled trial. Br Med J. 2011;342:d3193.CrossRef
28.
Wegwarth O, Gigerenzer G. The barrier to informed choice in cancer screening: statistical illiteracy in physicians and patients. In: Goerling U, Mehnert A, editors. Recent results in Cancer research: psycho-oncology. 2nd ed. Heidelberg: Springer-Verlag; 2018. p. 207–21.
29.
McDowell M, Rebitschek F, Gigerenzer G, Wegwarth O. A simple tool for communicating the benefits and harms of health interventions: a guide for creating a fact box. MDM Policy Prac. 2016;1:2381468316665365.
30.
31.
Schwartz LM, Woloshin S, Welch H. Know your chances: understanding health statistics. White River junction, VT: VA outcomes group; 2005.
32.
McGettigan P, Sly K, O'Connell D, Hill S, Henry D. The effects of information framing on the practices of physicians. J Gen Intern Med. 1999;14(10):633–42.CrossRef
33.
Moxey A, O'Connell D, McGettigan P, Henry D. Describing treatment effects to patients: how they are expressed makes a difference. J Gen Intern Med. 2003;18(11):948–59.CrossRef
34.
Jain BP. Number needed to treat and relative risk reduction. Ann Intern Med. 1998;128(1):72–3.CrossRef
35.
Sethuraman R, Cole C, Jain D. Analyzing the effect of information format and task on cutoff search strategies. J Consum Psychol. 1994;3(2):103–36.CrossRef
36.
Covey J. A meta-analysis of the effects of presenting treatment benefits in different formats. Med Decis Mak. 2007;27(5):638–54.CrossRef
37.
Wegwarth O, Gigerenzer G. “There is nothing to worry about”: gynecologists’ counseling on mammography. Patient Educ Couns. 2011;84(2011):251–6.CrossRef
38.
Wegwarth O, Gaissmaier W, Gigerenzer G. Deceiving numbers: survival rates and their impact on doctors’ risk communication. Med Decis Mak. 2011;31(3):386–94.CrossRef
39.
Wegwarth O, Schwartz LM, Woloshin S, Gaissmaier W, Gigerenzer G. Do physicians understand cancer screening statistics? A national survey of primary care physicians in the U.S. Ann Intern Med. 2012;156(5):340–9.CrossRef
40.
Prinz R, Feufel MA, Gigerenzer G, Wegwarth O. What counselors tell low-risk clients about HIV test performance. Current HIV Res. 2015;13:369–80.CrossRef
41.
Ries NM, Hyed-Lay R, Caulfield T. Willigness to pay for genetic testing: a study of attitudes in a Canadian population. Public Health Genomics. 2010;13:292–300.CrossRef
42.
Cherkas LF, Levinson E, Spector TD, Prainsack B. A survey of UK public interest in internet-based personal genome testing. PLoS One. 2010;5:e13473.CrossRef
43.
Marshall DA, Gonzalez JM, Johnson FR, MacDonald KV, Pugh A, Douglas MP, et al. What are people willing to pay for whole-genome sequencing information, and who decides what the receive? Genet Med. 2016;18(12):1295–300.CrossRef
44.
Almeyda T, Andersson L. Nutzen und Risiken der Personalisierten Medizin aus gesellschaftlicher Perspektive - Analyse der Berichterstattung in den deutschen, britischen und US-amerikanischen Medien [Benefit and harms od personlized medicine from the perspective of the public: analysis of German, English, and American media reports. IME Working paper. 2011;2011–01.
45.
Sheeran P, Webb TL. The intention-behavior gap. Soc Personal Psychol Compass. 2016;10(9):503–18.CrossRef
46.
Wegwarth O, Wagner GG, Gigerenzer G. Can facts trump unconditional trust? Evidence-based information halves the influence of physicians’ non-evidence-based cancer screening recommendations. PLoS One. 2017;12(8):e0183024.CrossRef
Metadata
Title
Women’s perception, attitudes, and intended behavior towards predictive epigenetic risk testing for female cancers in 5 European countries: a cross-sectional online survey
Authors
Odette Wegwarth
Nora Pashayan
Martin Widschwendter
Felix G. Rebitschek
Publication date
01-12-2019
Publisher
BioMed Central
Keyword
Epigenetics
Published in
BMC Public Health / Issue 1/2019
Electronic ISSN: 1471-2458
DOI
https://doi.org/10.1186/s12889-019-6994-8

Other articles of this Issue 1/2019

BMC Public Health 1/2019 Go to the issue

Research article

Preferences for an HIV prevention mobile phone app: a qualitative study among men who have sex with men in China

Research article

The perceived neighborhood environment is associated with health-enhancing physical activity among adults: a cross-sectional survey of 13 townships in Taiwan

Research article

Quality of a life skills training program in Karnataka, India - a quasi experimental study

Research article

Innovation diffusion: how homogenous networks influence the uptake of community-based injectable contraceptives

Research article

RETRACTED ARTICLE: The distribution and socioeconomic burden of Hepatitis C virus in South Australia: a cross-sectional study 2010–2016

Research article

Injured worker experiences of insurance claim processes and return to work: a national, cross-sectional study