Public perceptions of international genetic information sharing for biomedical research in China: a case study of the social media debate on the article "A Pangenome Reference of 36 Chinese Populations" published in Nature.

BACKGROUND: The international disclosure of Chinese human genetic data continues to be a contentious issue in China, generating public debates in both traditional and social media channels. Concerns have intensified after Chinese scientists' research on pangenome data was published in the prestigious journal Nature. METHODS: This study scrutinized microblogs posted on Weibo, a popular Chinese social media site, in the two months immediately following the publication (June 14, 2023-August 21, 2023). Content analysis was conducted to assess the nature of public responses, justifications for positive or negative attitudes, and the users' overall knowledge of how Chinese human genetic information is regulated and managed in China. RESULTS: Weibo users displayed contrasting attitudes towards the article's public disclose of pangenome research data, with 18% positive, 64% negative, and 18% neutral. Positive attitudes came primarily from verified government and media accounts, which praised the publication. In contrast, negative attitudes originated from individual users who were concerned about national security and health risks and often believed that the researchers have betrayed China. The benefits of data sharing highlighted in the commentaries included advancements in disease research and scientific progress. Approximately 16% of the microblogs indicated that Weibo users had misunderstood existing regulations and laws governing data sharing and stewardship. CONCLUSIONS: Based on the predominantly negative public attitudes toward scientific data sharing established by our study, we recommend enhanced outreach by scientists and scientific institutions to increase the public understanding of developments in genetic research, international data sharing, and associated regulations. Additionally, governmental agencies can alleviate public fears and concerns by being more transparent about their security reviews of international collaborative research involving Chinese human genetic data and its cross-border transfer.

Facilitators and Barriers to Understanding and Accepting People with a Sexual Interest in Children: A Thematic Analysis.

The widespread conflation between having a sexual interest in children and engaging in sexually abusive behavior contributes significantly to elevated levels of stigma targeted at people living with a sexual interest in children. Stigmatization and societal punitiveness surrounding people living with these interests can impact their well-being, obstruct help-seeking, and potentially increase risk of offending behavior. Recent quantitative research employing stigma intervention strategies has produced encouraging results in reducing stigmatizing attitudes toward this population. The current study sought to expand on quantitative research findings to explore qualitatively the facilitators and barriers to understanding and accepting people living with sexual interest in children. Thirty participants were interviewed following completion of an online stigma intervention study. Participants were asked about their attitudinal responses to the earlier study and how personal and professional experiences contributed to shaping their attitudes surrounding people living with a sexual interest in children. Reflexive inductive thematic analysis was used to explore what factors promote understanding and what factors act as barriers to understanding people with sexual interest in children. The significance of experiences which challenged the dominant social narrative was identified across several themes which facilitated understanding and acceptance of people who have a sexual interest in children. Themes which reflected barriers to understanding included difficulty comprehending alternate narratives, parental concern, and reinforcement of current stereotypes. Implications for developing stigma-reduction interventions and future research are discussed.

Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review.

BACKGROUND: International advances in information communication, eHealth, and other digital health technologies have led to significant expansions in the collection and analysis of personal health data. However, following a series of high-profile data sharing scandals and the emergence of COVID-19, critical exploration of public willingness to share personal health data remains limited, particularly for third-party or secondary uses. OBJECTIVE: This systematic review aims to explore factors that affect public willingness to share personal health data for third-party or secondary uses. METHODS: A systematic search of 6 databases (MEDLINE, Embase, PsycINFO, CINAHL, Scopus, and SocINDEX) was conducted with review findings analyzed using inductive-thematic analysis and synthesized using a narrative approach. RESULTS: Of the 13,949 papers identified, 135 were included. Factors most commonly identified as a barrier to data sharing from a public perspective included data privacy, security, and management concerns. Other factors found to influence willingness to share personal health data included the type of data being collected (ie, perceived sensitivity); the type of user requesting their data to be shared, including their perceived motivation, profit prioritization, and ability to directly impact patient care; trust in the data user, as well as in associated processes, often established through individual choice and control over what data are shared with whom, when, and for how long, supported by appropriate models of dynamic consent; the presence of a feedback loop; and clearly articulated benefits or issue relevance including valued incentivization and compensation at both an individual and collective or societal level. CONCLUSIONS: There is general, yet conditional public support for sharing personal health data for third-party or secondary use. Clarity, transparency, and individual control over who has access to what data, when, and for how long are widely regarded as essential prerequisites for public data sharing support. Individual levels of control and choice need to operate within the auspices of assured data privacy and security processes, underpinned by dynamic and responsive models of consent that prioritize individual or collective benefits over and above commercial gain. Failure to understand, design, and refine data sharing approaches in response to changeable patient preferences will only jeopardize the tangible benefits of data sharing practices being fully realized.

Exploring the landscape of public attitudes towards gene-edited foods in Japan.

The success or failure of food technologies in society depends to a large extent on the public interest, concerns, images, and expectations surrounding them. This paper delves into the landscape of public attitudes towards gene-edited foods in Japan, exploring the reasons behind the acceptance or rejection of these products. A literature review and preliminary findings from a survey conducted in Japan in 2022, aim to identify key issues crucial for evaluating societal acceptance of gene-edited foods. The study showed that the public view gene-edited foods as somewhat unnatural, but upon closer examination, significant variation in attitudes was observed among respondents. Some respondents expressed a favorable perception towards gene-edited foods, particularly those that benefit consumers, while others expressed concerns about its perceived artificiality. Moreover, a significant number of respondents displayed indifference or lack of clear perspective regarding gene-edited foods. These findings reflect the complex relationship between public attitudes, naturalness, and social acceptance of gene-edited foods. Furthermore, the study indicates the importance of paying close attention to those who refrain from expressing their viewpoints in the survey. This nuanced landscape warrants further exploration.

Public attitudes towards protecting the human rights of people with mental illness: a scoping review and data from a population trend study in Germany.

The human rights of people with mental illness are constantly threatened. We conduct a scoping review showing how public attitudes towards protecting human rights have so far been examined and providing an overview of our present knowledge of these attitudes, and present novel findings from a trend study in Germany over nine years, reporting attitudes elicited in 2020 and examining whether these attitudes have changed since 2011. Few studies address attitudes towards human rights explicitly, but several studies contain single items on either first generation human rights, mainly concerning involuntary admission, or civil liberties like the right to vote, or second generation human rights, mainly with regard to funding for healthcare, but also for example regarding career choice. Recent data from Germany showed little improvement in attitudes towards protecting human rights over the last decade and particularly high support for restricting job opportunities for people with mental illness. Although generally, most restrictions were supported by a minority of respondents only, both our data and our scoping review indicate substantial support for several restrictions in several countries, showing that public attitudes pose a challenge to the human rights of persons with mental illness. We discuss possible lines of future research.

Should AI allocate livers for transplant? Public attitudes and ethical considerations.

BACKGROUND: Allocation of scarce organs for transplantation is ethically challenging. Artificial intelligence (AI) has been proposed to assist in liver allocation, however the ethics of this remains unexplored and the view of the public unknown. The aim of this paper was to assess public attitudes on whether AI should be used in liver allocation and how it should be implemented. METHODS: We first introduce some potential ethical issues concerning AI in liver allocation, before analysing a pilot survey including online responses from 172 UK laypeople, recruited through Prolific Academic. FINDINGS: Most participants found AI in liver allocation acceptable (69.2%) and would not be less likely to donate their organs if AI was used in allocation (72.7%). Respondents thought AI was more likely to be consistent and less biased compared to humans, although were concerned about the "dehumanisation of healthcare" and whether AI could consider important nuances in allocation decisions. Participants valued accuracy, impartiality, and consistency in a decision-maker, more than interpretability and empathy. Respondents were split on whether AI should be trained on previous decisions or programmed with specific objectives. Whether allocation decisions were made by transplant committee or AI, participants valued consideration of urgency, survival likelihood, life years gained, age, future medication compliance, quality of life, future alcohol use and past alcohol use. On the other hand, the majority thought the following factors were not relevant to prioritisation: past crime, future crime, future societal contribution, social disadvantage, and gender. CONCLUSIONS: There are good reasons to use AI in liver allocation, and our sample of participants appeared to support its use. If confirmed, this support would give democratic legitimacy to the use of AI in this context and reduce the risk that donation rates could be affected negatively. Our findings on specific ethical concerns also identify potential expectations and reservations laypeople have regarding AI in this area, which can inform how AI in liver allocation could be best implemented.

The Potential for Anti-Stigma Interventions to Change Public Attitudes Toward Minor-Attracted Persons: A Replication and Extension of Jara and Jeglic's Study.

From a public health perspective, ensuring access to, and uptake of, support services for people concerned about their sexual thoughts and behavior is essential to the prevention of child sexual abuse. However, public and fiscal support for these services can be adversely affected by negative preconceptions regarding minor-attracted persons (MAPs); negative stigma may also limit MAPs' engagement with such services. Using a randomized-control design, the present study replicated and extended a recent US study to test effects of different modes of educational messaging to reduce negative attitudes toward MAPs in Australia. Participants were recruited nationally via a Qualtrics XM online survey platform. The final sample (n = 178) were aged 18-84 (M = 47.57 years, SD = 17.34; 49% male). Participants completed the Attitudes Toward Minor Attracted Persons (ATMAP) scale prior to being randomly assigned to one of four conditions (written text [facts only]; written text [myth and facts]; info-video [myths and facts]; and control). Following intervention (or control) the ATMAP was readministered; those in experimental groups also completed a comprehension test. Mixed between-within subjects analysis of covariance revealed significant reductions in pre-post scores on the ATMAP scale, but no significant differences were found across intervention types, or the control. Scores indicated that older participants were less negative in their attitudes compared to younger participants, both before and after intervention. Findings suggest that educating the public may improve attitudes toward MAPs, but more knowledge is required on how to best disseminate messages to maximize impact.

COVID-19 and (mis)understanding public attitudes to social security: Re-setting debate.

The Covid-19 pandemic has seen emerging debate about a possible shift in 'anti-welfare commonsense' i.e. the orthodoxy previously described in this journal as solidifying negative public attitudes towards 'welfare'. While a shift in attitudes might be ascribed to the circumstances of the crisis it would still be remarkable for such a strongly established orthodoxy to have changed quite so rapidly. It is appropriate, therefore, to reflect on whether the 'anti-welfare' orthodoxy was in fact as unequivocal as claimed? To address this question, challenges to the established orthodoxy that were emerging pre-pandemic are examined along with the most recently available survey data. This leads to discussion of broader issues relating to understanding attitudes: methodology; 'messiness' and ambivalence of attitudes; attitudes and constructions of deservingness; and following or leading opinion. It is argued that the 'anti-welfare' orthodoxy has always been far more equivocal than claimed, with consequent implications for anti-poverty action and re-setting debate.

Portrayals of gun violence victimization and public support for firearm policies: an experimental analysis.

Objectives: This study examines how characteristics of victims and types of incidents described in a media account of gun violence affect public support for three categories of policies that regulate firearms. Methods: A randomized experiment with a sample of US public (N = 3410). Results: Victim race, particularly if the victim was Black, was a strong predictor of less public support for all tested categories of firearm regulation. Respondents were less supportive of policies to address gun suicide or accidents and more supportive of policy solutions to mass shootings, compared to street-level gun homicides. Depictions of victim gender, mental illness, prior incarceration, and age were less salient to support across categories of firearm regulation, compared to race and type of incident. Conclusions: Media coverage of gun violence has heterogenous effects on public support for firearm regulation and may influence support for policies aimed at reducing specific types of gun violence.

Timeliness of information disclosure during the low transmission period of COVID-19: resident-level observational study in China.

BACKGROUND: Only when people feel they have received timely disclosure will they have sufficient incentive to implement community prevention and control measures. The timely and standardized information published by authorities as a response to the crisis can better inform the public and enable better preparations for the pandemic during the low transmission period of COVID-19; however, there is limited evidence of whether people consent that information is disclosed timely and influencing factors. METHODS: A cross-sectional survey was conducted in China from 4 to 26 February 2021. Convenient sampling strategy was adopted to recruit participators. Participants were asked to filled out the questions that assessed questionnaire on the residents' attitudes to information disclosure timely. A binary logistic regression analysis was performed to identify the risk factors affecting the residents' attitudes. RESULTS: A total of 2361 residents filled out the questionnaire. 1704 (72.17%) consented COVID-19 information has been disclosed timely. Furthermore, age (OR = 0.093, 95%CI = 0.043 ~ 0.201), gender (OR = 1.396, 95%CI = 1.085 ~ 1.797), place of residence (OR = 0.650, 95%CI = 0.525 ~ 0.804), employed status (OR = 2.757, 95%CI = 1.598 ~ 4.756), highest educational level (OR = 0.394, 95%CI = 0.176 ~ 0.880), region (OR = 0.561, 95%CI = 0.437 ~ 0.720) and impact on life by the COVID-19 (OR = 0.482, 95%CI = 0.270 ~ 0.861) were mainly factors associated with residents' attitudes. CONCLUSIONS: The aims of this study were to evaluate the residents attitudes to information disclosure timely during the low transmission period in China and to provide a scientific basis for effective information communication in future public health crises. Timely and effective efforts to disclose information need to been made during the low transmission period. Continued improvements to local authority reporting will contribute to more effective public communication and efficient public health research responses. The development of protocols and the standardization of epidemic message templates-as well as the use of uniform operating procedures to provide regular information updates-should be prioritized to ensure a coordinated national response.

Who's afraid of genetic tests?: An assessment of Singapore's public attitudes and changes in attitudes after taking a genetic test.

BACKGROUND: As a consequence of precision medicine initiatives, genomic technologies have rapidly spread around the world, raising questions about genetic privacy and the ethics of data sharing. Previous scholarship in bioethics and science and technology studies has made clear that different nations have varying expectations about trust, transparency, and public reason in relation to emerging technologies and their governance. The key aims of this article are to assess genetic literacy, perceptions of genetic testing, privacy concerns, and governing norms amongst the Singapore population by collecting surveys. METHODS: This study investigated genetic literacy and broad public attitudes toward genetic tests in Singapore with an online public survey (n = 560). To assess potential changes in attitudes following receipt of results from a genetic test, we also surveyed undergraduate students who underwent a genetic screen as part of a university class before and after they received their test results (n = 25). RESULTS: Public participants showed broad support for the use of genetic tests; scored an average of 48.9% in genetic literacy; and expressed privacy concerns over data sharing and a desire for control over their genetic data. After taking a genetic test and receiving genetic test results, students reported less fear of genetic tests while other attitudes did not change significantly. CONCLUSION: These findings highlight the potential of genetic education and active engagement with genetic testing to increase support and participation in genomic projects, PM, and biobanking initiatives; and they suggest that data privacy protections could potentially reduce discrimination by giving participants control over who can access their data. More specifically, these findings and the dataset we provide may be helpful in formulating culturally sensitive education programs and regulations concerning genomic technologies and data privacy.

'I don't want my son to be part of a giant experiment': public attitudes towards COVID-19 vaccines in children.

OBJECTIVES: This qualitative study explored public attitudes to COVID-19 vaccines in children, including reasons for support or opposition to them. STUDY DESIGN: This was a qualitative study using online focus groups and interviews. METHODS: Group and individual online interviews were conducted with a diverse sample of 24 adults in the United Kingdom to explore their views on the issue of COVID-19 vaccination in children. Data were analysed using a framework approach. RESULTS: COVID-19 vaccination in children was framed as a complex problem (a 'minefield'). Six themes emerged to explain participants views: (1) uncertainty over whether children can catch, transmit or be severely harmed by COVID-19; (2) lower risk tolerance for unknown longer term effects of the vaccine in children; (3) association of the vaccine programme with government's handling of the pandemic; (4) local social norms as a driver of hesitancy; (5) vaccinating children as a way to protect vulnerable adults; and (6) children's vaccination as parental choice. CONCLUSIONS: COVID-19 vaccination in children is perceived by members of the public as a complex issue, and many are torn or hesitant about the idea. Public health communications will need to combat this hesitancy if vaccine uptake for children is to be pursued as a public health policy.

A tale of "second chances": an experimental examination of popular support for early release mechanisms that reconsider long-term prison sentences.

Objectives: This study examines US popular support for mechanisms that provide early release and "second chances" for individuals serving long-term prison sentences. Methods: An experiment using a national sample of US adults (N=836). Results: Data showed moderate, consistent levels of general support for using a range of commonly available "second chance" mechanisms that also extended to offenders convicted of both violent and non-violent offenses. Levels of support significantly varied by race, gender, and age. There was significantly more support for using certain mechanisms in response to the trafficking of serious drugs, which was fully mediated by participants' views on the importance of the cost of incarceration. Conclusions: Members of the public appear open and supportive to utilizing "second chance" mechanisms in a variety of contexts. Yet the cost of incarceration to taxpayers appears to particularly motivate increased public interest in using such mechanisms for offenders convicted of the trafficking of serious drugs.

Measuring Attitudes About Genomic Medicine: Validation of the Genomic Orientation Scale (GO Scale).

OBJECTIVES: Assessing public attitudes about genomic medicine is critical for anticipating patient receptivity to clinical applications of genomics. Although scholars have highlighted the importance of assessing stakeholder opinions and views regarding advances in clinical genomics, to date there has not been a robust tool for measuring these attitudes. We designed a study to evaluate the validity of an instrument we developed for measuring attitudes about genomic medicine. METHODS: We used psychometric methods to validate the Genomic Orientation Scale (GO Scale). Our goal was to create an easy-to-use tool for evaluating positive and negative attitudes about genomic medicine. RESULTS: We describe the validation testing of the GO Scale in a nationally representative sample of 1536 individuals residing in the United States. We report results from convergent and divergent validity testing and Rasch modeling analysis. The study produced a 26-item scale with 2 dimensions-optimism and pessimism. CONCLUSIONS: The GO Scale may be used to characterize attitudinal perspectives among patients, clinicians, and the public. The GO Scale may also be useful in evaluating shifts in attitude over time, for example, following educational interventions, which has not been feasible to date.

Perceptions associated with the public attitudes toward epilepsy (PATE) scale: A mixed-method study.

BACKGROUND: In epilepsy stigma, certain perceptions are culturally dependent and greatly influence a person's attitudes. Hence, we aimed to explore the perceptions associated with attitudes toward epilepsy in various urban subpopulations. METHOD: This is a mixed-method study employing the Public Attitude Toward Epilepsy (PATE) scale as the quantitative measure, followed by a semi-structured interview. The qualitative data were then counted and analyzed concurrently with the quantitative data. RESULT: A total of 410 respondents (104 people with epilepsy [PWE]; 104 family members [FM]; 100 medical students [MS]; 102 public [Pb]) aged 37 years (IQR 23-55) were recruited. They were mostly female (57.3%), Chinese (52.0%), and highly educated (63.7%). The attitudes toward epilepsy among medical students are the best, followed by the PWE and their family members, and the worst among the public. The qualitative results revealed 4 main themes, which were "general social values", "epilepsy severity and control", "PWE's abilities", and "harms and burdens to the respondents and others". A two-dimensional perception model was constructed based on these themes, which consisted of general-personal and universal-specific dimensions. Generally, the PWE/FM subgroup focused more on PWE's abilities, whereas the MS/Pb subgroup more on general social values, and harms and burden. In the education aspect, most attitudes were related to the epilepsy severity and PWE's abilities, whereas in employment, the main consideration was the PWE's abilities. Burden to life and concern about inheritance were major considerations in the marital relationship. Those with positive attitudes tend to highlight the importance of general social values, while negative attitudes associated more with epilepsy severity. In general domain, general social values were the main considering factor but in personal domain, most participants will consider epilepsy severity and control, harms and burden to themselves. CONCLUSION: The perceptions underlying attitudes toward epilepsy were complex and varied between subpopulations, attitude levels, domains, and aspects of life. (304 words).

Changing Public Tolerance for Same-Sex Sexual Behaviors in China, 2010-2017: A Decomposition Analysis.

Although the majority of the Chinese general public remains unaccepting of same-sex sexual behaviors, results from multiple waves of the Chinese General Social Survey have shown a substantial change in the public tolerance for same-sex sexual behaviors between 2010 and 2017. Using logistic regression models and decomposition analysis, the current study revealed that while changes in the changes in the demographic predictors (e.g., cohort succession and improved education) contributed to some of the attitudinal change, changes in the predictor coefficients explained most of the attitudinal change. Specifically, the Internet historically played a critical role in shaping pro-LGBTQ consciousness in China, but its effect has diminished over time. Socioeconomic factors such as education and household registration status (i.e., urban versus rural origin) have gained statistical significance and effect size in their prediction of public tolerance. Policy and advocacy implications of the findings are also discussed.

Acceptability and potential impact on uptake of using different risk stratification approaches to determine eligibility for screening: A population-based survey.

BACKGROUND: Using risk stratification approaches to determine eligibility has the potential to improve efficiency of screening. OBJECTIVES: To compare the public acceptability and potential impact on uptake of using different approaches to determine eligibility for screening. DESIGN: An online population-based survey of 668 adults in the UK aged 45-79 including a series of scenarios in the context of a potential kidney cancer screening programme in which eligibility was determined by age, sex, age and sex combined, a simple risk score (age, sex, body mass index, smoking status), a complex risk score additionally incorporating family history and lifestyle, or a genetic risk score. OUTCOME MEASURES: We used multi-level ordinal logistic regression to compare acceptability and potential uptake within individuals and multivariable ordinal logistic regression differences between individuals. RESULTS: Using sex, age and sex, or the simple risk score were less acceptable than age (P < .0001). All approaches were less acceptable to women than men. Over 70% were comfortable waiting until they were older if the complex risk score or genetics indicated a low risk. If told they were high risk, 85% would be more likely to take up screening. Being told they were low risk had no overall influence on uptake. CONCLUSIONS: Varying the starting age of screening based on estimated risk from models incorporating phenotypic or genetic risk factors would be acceptable to most individuals and may increase uptake. PATIENT OR PUBLIC CONTRIBUTION: Two members of the public contributed to the development of the survey and have commented on this paper.

Public attitudes towards COVID-19 contact tracing apps: A UK-based focus group study.

BACKGROUND: During the 2020 COVID-19 pandemic, one of the key components of many countries' strategies to reduce the spread of the virus is contact tracing. OBJECTIVE: To explore public attitudes to a COVID-19 contact tracing app in the United Kingdom. SETTING: Online video-conferencing. PARTICIPANTS: 27 participants, UK residents aged 18 years and older. METHODS: Qualitative study consisting of six focus groups carried out between 1st-12th May, 2020 (39-50 days into the UK 'lockdown'). RESULTS: Participants were divided as to whether or not they felt they would use the app. Analysis revealed five themes: (1) lack of information and misconceptions surrounding COVID-19 contact tracing apps; (2) concerns over privacy; (3) concerns over stigma; (4)concerns over uptake; and (5) contact tracing as the 'greater good'. Concerns over privacy, uptake and stigma were particularly significant amongst those stated they will not be using the app, and the view that the app is for the 'greater good' was particularly significant amongst those who stated they will be using the app. One of the most common misconceptions about the app was that it could allow users to specifically identify and map COVID-19 cases amongst their contacts and in their vicinity. CONCLUSIONS: Our participants were torn over whether digital contact tracing is a good idea or not, and views were heavily influenced by moral reasoning. PATIENT OR PUBLIC CONTRIBUTION: No patients were involved in this study. The public were not involved in the development of the research questions, research design or outcome measures. A pilot focus group with participants not included in the present paper was used to help test and refine the focus group questions. Summary results were disseminated via email to participants prior to publication for feedback and comment.

What drives public attitudes towards moral bioenhancement and why it matters: an exploratory study.

The paper represents an empirical study of public attitudes towards moral bioenhancement. Moral bioenhancement implies the improvement of moral dispositions, i.e. an increase in the moral value of the actions or character of a moral agent. The views of bioethicists and scientists on this topic are present in the ongoing debate, but not the view of the public in general. In order to bridge the gap between the philosophical debate and the view of the public, we have examined attitudes towards moral bioenhancement. The participants were people from Serbia older than 15, who voluntarily completed an online questionnaire. The questionnaire consisted of a brief introduction to moral bioenhancement, seven general questions, 25 statements about participants' attitudes towards moral bioenhancement, and five examples of moral dilemmas. The questionnaire also included questions which were used to reveal their preference of either deontology, or utilitarianism. Participants were asked to what degree they agree or disagree with the statements. The results showed that the means used to achieve moral enhancement, the level of education, and preference for deontology or utilitarianism do have an impact on public attitudes. Using exploratory factor analysis, we isolated four factors that appear to drive the respondents' attitudes toward moral bioenhancement, we named: general-closeness, fear of change, security, and voluntariness. Each factor in relationship to other variables offers new insights that can inform policies and give us a deeper understanding of the public attitudes. We argue that looking into different facets of attitudes towards moral bioenhancement improves the debate, and expands it.

Before the 2020 Pandemic: an observational study exploring public knowledge, attitudes, plans, and preferences towards death and end of life care in Wales.

BACKGROUND: Understanding public attitudes towards death and dying is important to inform public policies around End of Life Care (EoLC). We studied the public attitudes towards death and dying in Wales. METHODS: An online survey was conducted in 2018. Social media and the HealthWiseWales platform were used to recruit participants. Data were analysed using descriptive statistics and thematic analysis. RESULTS: 2,210 people participated. Loss of independence (84%), manner of death, and leaving their beloved behind were the biggest fears around death and dying. In terms of EoLC, participants sought timely access to care (84%) and being surrounded by loved ones (62%). Being at home was less of a priority (24%). Only 50% were familiar with Advance Care Planning (ACP). A lack of standard procedures as well as of support for the execution of plans and the ability to revisit those plans hindered uptake. The taboo around death conversations, the lack of opportunities and skills to initiate discussion, and personal fear and discomfort inhibited talking about death and dying. 72% felt that we do not talk enough about death and dying and advocated normalising talking by demystifying death with a positive approach. Health professionals could initiate and support this conversation, but this depended on communication skills and manageable workload pressure. Participants encouraged a public health approach and endorsed the use of: a) social media and other public platforms, b) formal education, c) formal and legal actions, and d) signposting and access to information. CONCLUSIONS: People are ready to talk about death and dying and COVID-19 has increased awareness. A combination of top-down and bottom-up initiatives across levels and settings can increase awareness, knowledge, and service-utilisation-drivers to support health professionals and people towards shared decisions which align with people's end of life wishes and preferences.