Questioning ‘Informed Choice’ in Medical Screening: The Role of Neoliberal Rhetoric, Culture, and Social Context
Abstract
:1. Introduction
2. Materials and Methods
Theoretical Onset
3. Results and Analysis
3.1. Assumption 1: The Availability of Balanced and Neutral Information
3.2. Assumption 2: The Decision-Maker Can Understand and Interpret the Information Provided
“Yes, it’s not sure that you have cancer when you get this test, and maybe it’s unnecessary; but of course, you need to do it anyway. So actually it’s lovely that, out of all the women getting it done, only a few have cancer.”(Olivia, 53 years) [25], page 12.
“It doesn’t matter if I don’t live longer, as long as I get saved from dying [from breast cancer].”(Mary) [24], page 6.
3.3. Assumption 3: The Decision-Maker Can Relate Information to Personal Values and Preferences
“That’s just the way I am. I do what I have to do and what I can do in relation to my body and my health. So, that’s just what you do. When you receive that letter, you just do it.”(Charlotte, 57) [28], page 706.
“My Mum has also gone to do it [mammography screening], so I’ve been talking to her about it and she is comfortable with it too and thinks it’s worthwhile.”(Lisa) [24], page 5.
“I felt that it was amazing; that one could be so lucky as to be invited to screening. I think it’s very generous to be offered such an examination free of charge.”(Anne, 70) [28], page 705.
“I think that when you’re offered screening, then you should take it. Most certainly. A lot of women don’t want to. I don’t get that. We should be pleased that we are offered screening.”(Barbara, 72) [26].
4. Discussion
4.1. Informed Consent as a Modern Power Technology
4.2. Strengths and Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
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(1) The availability of balanced and neutral information The decision-maker needs neutral and balanced information on both the benefits and the harms. This means that the decision-maker can access the best-available evidence about the consequences of all of the possible choice options, and that this evidence is presented in a neutral and balanced way. |
(2) The decision-maker can understand and interpret the information provided The decision-maker should be able to understand and interpret the information. This means that the information and health statistics should be communicated in an understandable way, and the benefits and harms should be comparable. |
(3) The decision-maker can relate information to personal values and preferences The decision-maker should be able to relate the information to their own personal values and preferences. In a screening setting, this would imply that the individual is able to predict and accept the future consequences of their choice. |
Included Articles | Study Description | SQ1: Framing of ‘Informed Choice’ | SQ2: Priorities, Attitudes, and Perspectives of Citizens | Support for Analysis and Interpretation |
---|---|---|---|---|
Damhus et al. 2018 [22] | Interview study on the understandability of information in colorectal cancer screening in Denmark | There is an international consensus that participation in screening should be based on informed consent | Trust in authorities, preventing cancer is important, reassurance of screening, harms are not important, focus on the benefits | Assumption 1: Information is not balanced, understates or omits the harm, yet overstates the benefits. Assumption 3: Participation is a moral obligation. |
Østerlie et al. 2008 [23] | Focus groups about the decision-making process among women invited for mammography screening in Norway | Whether a decision was based on information provided in the national leaflet for mammography screening | Grateful for invitation, difficult to cope with the fear of potential disease, responsible health behaviour, worry avoidance | Assumption 1: The women did not base their decision on information in the leaflet and felt that it was no decision to participate or not. |
Henriksen et al. 2015 [24] | Interview study that explores the influence of framing in information material in breast cancer screening in Denmark | Decision-making processes were not based on the information that accompanied the screening invitation | Attitudes from family and friends are important, do not need information about harms, screening is important, accepts harms, leaflets are instructions | Assumption 2: The women misinterpreted the harm. Assumption 3: Participation is a moral obligation and decision is influenced by family. |
Byskov Petersen et al. 2020 [25] | Interview study on the understandability of benefits and harms of cervical cancer screening in Denmark | Adequate information plays a central role in the process of informed choice | Numbers don’t matter the lives do, unaware and shocked about harm, misinterpret and understate harms | Assumption 2: The women downplayed or ignored the harms. |
Gram et al. 2023 [26] | Interview study on the experiences of being discontinued from mammography screening in Denmark | Whether women are aware of why they are being discontinued from screening | Societal value of invitation, participation is a moral obligation, gratitude | Assumption 2: Women exempted themselves from the risk of being harmed. Assumption 3: Participation is a moral obligation and is considered authoritative. |
Jensen et al. 2021 [27] | Deliberative poll using video information material on mammography screening in Denmark | Are opinions about screening consistent with knowledge about screening | Information increases knowledge about screening but does not change opinions or willingness to participate | Assumption 2: The women altered their preferences for screening to fit the available information. |
Lindberg et al. 2013 [28] | Interview study on the long-term experience of mammography screening in Denmark | Communication regulates choices and forms these as right or wrong | Fear of cancer, gratitude, confidence in screening, seeking confirmation of well-being | Assumption 3: Not reluctant to participate, grateful for the screening program |
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Gram, E.G.; Jønsson, A.B.R.; Brodersen, J.B.; Damhus, C.S. Questioning ‘Informed Choice’ in Medical Screening: The Role of Neoliberal Rhetoric, Culture, and Social Context. Healthcare 2023, 11, 1230. https://doi.org/10.3390/healthcare11091230
Gram EG, Jønsson ABR, Brodersen JB, Damhus CS. Questioning ‘Informed Choice’ in Medical Screening: The Role of Neoliberal Rhetoric, Culture, and Social Context. Healthcare. 2023; 11(9):1230. https://doi.org/10.3390/healthcare11091230
Chicago/Turabian StyleGram, Emma Grundtvig, Alexandra Brandt Ryborg Jønsson, John Brandt Brodersen, and Christina Sadolin Damhus. 2023. "Questioning ‘Informed Choice’ in Medical Screening: The Role of Neoliberal Rhetoric, Culture, and Social Context" Healthcare 11, no. 9: 1230. https://doi.org/10.3390/healthcare11091230