Social patterning of screening uptake and the impact of facilitating informed choices: psychological and ethical analyses.
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ABSTRACT:
SUBMITTER: Crockett R
PROVIDER: S-EPMC2244696 | biostudies-other | 2008 Mar
REPOSITORIES: biostudies-other
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Project description:ObjectiveTo provide easy to use estimates of the benefits and harms of biennial screening mammography for women aged 40, 50, 60, and 70 years.DesignMarkov process model, with data from BreastScreen Australia, the Australian Institute of Health and Welfare, and the Australian Bureau of Statistics.Main outcome measureAge specific outcomes expressed per 1000 women over 10 years.ResultsFor every 1000 women screened over 10 years, 167-251 (depending on age) receive an abnormal result; 56-64 of these women undergo at least one biopsy, 9-26 have an invasive cancer detected by screening, and 3-6 have ductal carcinoma in situ (DCIS) detected by screening. More breast cancers (both invasive and DCIS) are diagnosed among screened than unscreened women. For example, among 1000 women aged 50 who have five biennial screens, 33 breast cancers are diagnosed: 28 invasive cancers (18 detected at screening and 10 interval cancers) and five DCIS (all detected at screening). By comparison, among 1000 women aged 50 who decline screening, 20 cancers are diagnosed over 10 years. There are about 0.5, 2, 3, and 2 fewer deaths from breast cancer over 10 years per 1000 women aged 40, 50, 60, and 70, respectively, who choose to be screened compared with women who decline screening at times determined by relevant policy.ConclusionBenefits and harms of screening mammography are relatively finely balanced. Quantitative estimates such as these can be used to support individual informed choices about screening.
| S-EPMC556337 | biostudies-literature
Project description:BackgroundTerms and conditions define the relationship between social media companies and users. However, these legal agreements are long and written in a complex language. It remains questionable whether users understand the terms and conditions and are aware of the consequences of joining such a network. With children from a young age interacting with social media, companies are acquiring large amounts of data, resulting in longitudinal data sets that most researchers can only dream of. The use of social media by children is highly relevant to their mental and physical health for 2 reasons: their health can be adversely affected by social media and their data can be used to conduct health research.ObjectiveThe aim of this paper is to offer an ethical analysis of how the most common social media apps and services inform users and obtain their consent regarding privacy and other issues and to discuss how lessons from research ethics can lead to trusted partnerships between users and social media companies. Our paper focuses on children, who represent a sensitive group among users of social media platforms.MethodsA thematic analysis of the terms and conditions of the 20 most popular social media platforms and the 2 predominant mobile phone ecosystems (Android and iOS) was conducted. The results of this analysis served as the basis for scoring these platforms.ResultsThe analysis showed that most platforms comply with the age requirements issued by legislators. However, the consent process during sign-up was not taken seriously. Terms and conditions are often too long and difficult to understand, especially for younger users. The same applies to age verification, which is not realized proactively but instead relies on other users who report underaged users.ConclusionsThis study reveals that social media networks are still lacking in many respects regarding the adequate protection of children. Consent procedures are flawed because they are too complex, and in some cases, children can create social media accounts without sufficient age verification or parental oversight. Adopting measures based on key ethical principles will safeguard the health and well-being of children. This could mean standardizing the registration process in accordance with modern research ethics procedures: give users the key facts that they need in a format that can be read easily and quickly, rather than forcing them to wade through chapters of legal language that they cannot understand. Improving these processes would help safeguard the mental health of children and other social media users.
| S-EPMC8103294 | biostudies-literature
Project description:BackgroundThe Informed Health Choices (IHC) Key Concepts is a framework that provides a basis for developing educational resources and evaluating people's ability to think critically about health actions. We developed the original Key Concepts framework by reviewing texts and checklists for the public, journalists, and health professionals and collecting structured feedback from an international advisory group. We revised the original 2015 framework yearly from 2016 to 2018 based on feedback and experience using the framework. The objectives of this paper are to describe the development of the framework since 2018 and summarise their basis.MethodsFor the 2019 version, we responded to feedback on the 2018 version. For the current 2022 version, in addition to responding to feedback on the 2019 version, we reviewed the evidence base for each of the concepts. Whenever possible, we referenced systematic reviews that provide a basis for a concept. We screened all Cochrane methodology reviews and searched Epistemonikos, PubMed, and Google Scholar for methodology reviews and meta-epidemiological studies.ResultsThe original framework included 32 concepts in six groups. The 2019 version and the current 2022 version include 49 concepts in the same three main groups that we have used since 2016. There are now 10 subgroups or higher-level concepts. For each concept, there is an explanation including one or more examples, the basis for the concept, and implications. Over 600 references are cited that support the concepts, and over half of the references are systematic reviews.ConclusionsThere is a large body of evidence that supports the IHC key concepts and we have received few suggestions for changes since 2019.
| S-EPMC10623542 | biostudies-literature
Project description:ObjectiveTo determine whether a decision aid designed for adults with low education and literacy can support informed choice and involvement in decisions about screening for bowel cancer.DesignRandomised controlled trial.SettingAreas in New South Wales, Australia identified as socioeconomically disadvantaged (low education attainment, high unemployment, and unskilled occupations).Participants572 adults aged between 55 and 64 with low educational attainment, eligible for bowel cancer screening.InterventionPatient decision aid comprising a paper based interactive booklet (with and without a question prompt list) and a DVD, presenting quantitative risk information on the possible outcomes of screening using faecal occult blood testing compared with no testing. The control group received standard information developed for the Australian national bowel screening programme. All materials and a faecal occult blood test kit were posted directly to people's homes.Main outcome measuresInformed choice (adequate knowledge and consistency between attitudes and screening behaviour) and preferences for involvement in screening decisions.ResultsParticipants who received the decision aid showed higher levels of knowledge than the controls; the mean score (maximum score 12) for the decision aid group was 6.50 (95% confidence interval 6.15 to 6.84) and for the control group was 4.10 (3.85 to 4.36; P<0.001). Attitudes towards screening were less positive in the decision aid group, with 51% of the participants expressing favourable attitudes compared with 65% of participants in the control group (14% difference, 95% confidence interval 5% to 23%; P=0.002). The participation rate for screening was reduced in the decision aid group: completion of faecal occult blood testing was 59% v 75% in the control group (16% difference, 8% to 24%; P=0.001). The decision aid increased the proportion of participants who made an informed choice, from 12% in the control group to 34% in the decision aid group (22% difference, 15% to 29%; P<0.001). More participants in the decision aid group had no decisional conflict about the screening decision compared with the controls (51% v 38%; P=0.02). The groups did not differ for general anxiety or worry about bowel cancer.ConclusionsTailored decision support information can be effective in supporting informed choices and greater involvement in decisions about faecal occult blood testing among adults with low levels of education, without increasing anxiety or worry about developing bowel cancer. Using a decision aid to make an informed choice may, however, lead to lower uptake of screening. Trial registration ClinicalTrials.gov NCT00765869 and Australian New Zealand Clinical Trials Registry 12608000011381.
| S-EPMC2965151 | biostudies-literature
Project description:BACKGROUND:Population-based prenatal screening has become a common and widely available obstetrical practice in majority of developed countries. Under the patient autonomy principle, women should understand the screening options, be able to take their personal preferences and situations into account, and be encouraged to make autonomous and intentional decisions. The majority of the current research focuses on the prenatal screening uptake rate, women's choice on screening tests, and the influential factors. However, little attention has been paid to women's choice-making processes and experiences in prenatal screening and their influences on choice satisfaction. Understanding women's choice-making processes and experiences in pregnancy and childbirth is the prerequisite for designing women-centered choice aids and delivering women-centered maternity care. This paper presents a pilot study that aims to investigate women's experiences when they make choices for screening tests, quantify the choice-making experience, and identify the experiential factors that affect women's satisfaction on choices they made. METHOD:We conducted a mixed-method research at Helsinki and Uusimaa Hospital District (HUS) in Finland. First, the women's choice-making experiences were explored by semi-structured interviews. We interviewed 28 women who participated in prenatal screening. The interview data was processed by thematic analysis. Then, a cross-sectional self-completion survey was designed and implemented, assessing women's experiences in choice-making and identifying the experiential factors that influence choice satisfaction. Of 940 distributed questionnaires, 185 responses were received. Multivariable linear regression analysis was used to detect the effects of the variables. RESULTS:We developed a set of measurements for women's choice-making experiences in prenatal screening with seven variables: activeness, informedness, confidence, social pressure, difficulty, positive emotion and negative emotion. Regression revealed that activeness in choice-making (??=?0.176; p?=?0.023), confidence in choice-making (??=?0.388; p?<?0.001), perceived social pressure (??=?-?0.306; p?<?0.001) and perceived difficulty (??=?-?0.274; p?<?0.001) significantly influenced women's choice satisfaction in prenatal screening. CONCLUSIONS:This study explores the experiential dimension of women's choice-making in prenatal screening. Our result will be useful for service providers to design women-centered choice environment. Women's willingness and capabilities of making active choices, their preferences, and social reliance should be well considered in order to facilitate autonomous, confident and satisfying choices.
| S-EPMC5930782 | biostudies-literature
Project description:BackgroundScreening invitations have traditionally been brief, providing information only about population benefits. Presenting information about the limited individual benefits and potential harms of screening to inform choice may reduce attendance, particularly in the more socially deprived. At the same time, amongst those who attend, it might increase motivation to change behavior to reduce risks. This trial assesses the impact on attendance and motivation to change behavior of an invitation that facilitates informed choices about participating in diabetes screening in general practice. Three hypotheses are tested: 1. Attendance at screening for diabetes is lower following an informed choice compared with a standard invitation. 2. There is an interaction between the type of invitation and social deprivation: attendance following an informed choice compared with a standard invitation is lower in those who are more rather than less socially deprived. 3. Amongst those who attend for screening, intentions to change behavior to reduce risks of complications in those subsequently diagnosed with diabetes are stronger following an informed choice invitation compared with a standard invitation.Method/design1500 people aged 40-69 years without known diabetes but at high risk are identified from four general practice registers in the east of England. 1200 participants are randomized by households to receive one of two invitations to attend for diabetes screening at their general practices. The intervention invitation is designed to facilitate informed choices, and comprises detailed information and a decision aid. A comparison invitation is based on those currently in use. Screening involves a finger-prick blood glucose test. The primary outcome is attendance for diabetes screening. The secondary outcome is intention to change health related behaviors in those attenders diagnosed with diabetes. A sample size of 1200 ensures 90% power to detect a 10% difference in attendance between arms, and in an estimated 780 attenders, 80% power to detect a 0.2 sd difference in intention between arms.DiscussionThe DICISION trial is a rigorous pragmatic denominator based clinical trial of an informed choice invitation to diabetes screening, which addresses some key limitations of previous trials.
| S-EPMC2666721 | biostudies-literature
Project description:ObjectiveTo compare the effect of an invitation promoting informed choice for screening with a standard invitation on attendance and motivation to engage in preventive action.DesignRandomised controlled trial.SettingFour English general practices.Participants1272 people aged 40-69 years, at risk for diabetes, identified from practice registers using a validated risk score and invited to attend for screening.InterventionIntervention was a previously validated invitation to inform the decision to attend screening, presenting diabetes as a serious potential problem, and providing details of possible costs and benefits of screening and treatment in text and pie charts. This was compared with a brief, standard invitation simply describing diabetes as a serious potential problem.Main outcome measuresThe primary end point was attendance for screening. The secondary outcome measures were intention to make changes to lifestyle and satisfaction with decisions made among attenders.ResultsThe primary end point was analysed for all 1272 participants. 55.8% (353/633) of those in the informed choice group attended for screening, compared with 57.6% (368/639) in the standard invitation group (mean difference -1.8%, 95% confidence interval -7.3% to 3.6%; P=0.51). Attendance was lower among the more deprived group (most deprived third 47.5% v least deprived third 64.3%; P<0.001). Interaction between deprivation and effect of invitation type on attendance was not significant. Among attenders, intention to change behaviour was strong and unaffected by invitation type.ConclusionsProviding information to support choice did not adversely affect attendance for screening for diabetes. Those from more socially deprived groups were, however, less likely to attend, regardless of the type of invitation received. Further attention to invitation content alone is unlikely to achieve equity in uptake of preventive services.Trial registrationCurrent Controlled Trials ISRCTN 73125647.
| S-EPMC2869404 | biostudies-literature
Project description:BackgroundHealthcare is a rapidly expanding area of application for Artificial Intelligence (AI). Although there is considerable excitement about its potential, there are also substantial concerns about the negative impacts of these technologies. Since screening and diagnostic AI tools now have the potential to fundamentally change the healthcare landscape, it is important to understand how these tools are being represented to the public via the media.MethodsUsing a framing theory approach, we analysed how screening and diagnostic AI was represented in the media and the frequency with which media articles addressed the benefits and the ethical, legal, and social implications (ELSIs) of screening and diagnostic AI.ResultsAll the media articles coded (n = 136) fit into at least one of three frames: social progress (n = 131), economic development (n = 59), and alternative perspectives (n = 9). Most of the articles were positively framed, with 135 of the articles discussing benefits of screening and diagnostic AI, and only 9 articles discussing the ethical, legal, and social implications.ConclusionsWe found that media reporting of screening and diagnostic AI predominantly framed the technology as a source of social progress and economic development. Screening and diagnostic AI may be represented more positively in the mass media than AI in general. This represents an opportunity for health journalists to provide publics with deeper analysis of the ethical, legal, and social implications of screening and diagnostic AI, and to do so now before these technologies become firmly embedded in everyday healthcare delivery.
| S-EPMC7725880 | biostudies-literature
Project description:There are, in mankind, two kinds of heredity: biological and cultural. Cultural inheritance makes possible for humans what no other organism can accomplish: the cumulative transmission of experience from generation to generation. In turn, cultural inheritance leads to cultural evolution, the prevailing mode of human adaptation. For the last few millennia, humans have been adapting the environments to their genes more often than their genes to the environments. Nevertheless, natural selection persists in modern humans, both as differential mortality and as differential fertility, although its intensity may decrease in the future. More than 2,000 human diseases and abnormalities have a genetic causation. Health care and the increasing feasibility of genetic therapy will, although slowly, augment the future incidence of hereditary ailments. Germ-line gene therapy could halt this increase, but at present, it is not technically feasible. The proposal to enhance the human genetic endowment by genetic cloning of eminent individuals is not warranted. Genomes can be cloned; individuals cannot. In the future, therapeutic cloning will bring enhanced possibilities for organ transplantation, nerve cells and tissue healing, and other health benefits.
| S-EPMC4517218 | biostudies-other
Project description:We tested whether preschool-aged children (N = 280) track an agents' choices of individuals from novel social groups (i.e., social choices) to infer an agent's social preferences and the social status of the groups. Across experiments, children saw a box containing 2 groups (red and blue toy cats). In Experiment 1, children were randomly assigned to Social Selection in which items were described as "friends," or to Object Selection in which items were described as "toys." Within each selection type, the agent selected 5 items from either a numerically common group (82% of box; selections appearing random) or a numerically rare group (18% of box; selections violating random sampling). After watching these selections, children were asked who the agent would play with among 3 individuals: 1 from the selected group, 1 from the unselected group, or 1 from a novel group. Only participants who viewed Social Selection of a numerically rare group predicted that the agent would select an individual from that group in the future. These participants also said an individual from the selected group was the "leader." Subsequent experiments further probed the Social Selection findings. Children's reasoning depended on the agent actively selecting the friends (Experiment 2), and children thought a member of the rare selected group was the leader, but not the "helper" (Experiment 3). These results illustrate that children track an agent's positive social choices to reason about that agent's social preferences and to infer the status (likelihood of being a leader) of novel social groups. (PsycInfo Database Record (c) 2021 APA, all rights reserved).
| S-EPMC8325718 | biostudies-literature