In bioethics as in other areas of health policy, historical institutional factors can shape policy independently of interests or public opinion. This article finds policy divergence among countries with similar national moral views of stem cell research, and explains that divergence as the product of path-dependency.

My aim in this paper is simply to show that, in bioethics no less than in other areas of health care, policy in democracies is shaped not only by principles and values, but also — and to some extent independently — by the shape and history of particular political institutions and past policies. “Path dependency,” or what one scholar has called the “accidental logics” of already-existing institutions, condition and guide national policy choices. These institutional and historical pressures can even create (...) substantial policy divergences between quite likeminded nations. I shall illustrate the point using some comparative data about national policies regarding research on human embryonic stem cells. The fact that gaps can develop between values and policies is readily visible to anyone who compares national stemcell research policies to the expressed attitudes of the citizens of various democratic countries regarding human embryonic stem-cell research. The role of path dependency and the accidental logics of institutional structure in creating those gaps can be illustrated by tracking down the details of the development of human embryonic stem cell policies in a few different countries. (shrink)

This article provides a critical and global overview of current research into public opinion about science and technology (S&T). Although several sets of high-quality data exist, there remains a lack of international coordination and irregular release of new data in forms that can be widely used. The article highlights a range of key challenges that those involved in collecting and reporting public opinion data about S&T can address to provide society with a more comprehensive and (...) more integrated picture of attitudes and understanding about S&T around the world. (shrink)

Education public opinion information management is an important research focus in the field of Education Data Mining. In this paper, we classify the education data information based on the traditional Flat-OCC model. From the cognitive psychology perspective, we identify up to 12 kinds of emotions, including sadness and happiness. In addition, the EMO-CBOW model is also proposed in this paper to further identify emotion by using various emoticons in educational data sets. The empirical result shows that the (...) proposed Flat-OCC model can classify and identify the emotion of education public opinion data well; and for the recognition of educational emotion classification, the categorization accuracy of the Flat-OCC+EMO-CBOW model is significantly higher than that of a single Flat-OCC model, which reveals that the emotional-pack-based model we propose can enhance our benchmark model. (shrink)

This major work surveys the historical roots, theoretical foundations, and normative claims of 20th-century conceptualizations of public opinion. It reanalyzes leading traditions, such as those of Lippmann, Dewey, and Noelle-Neumann, and reinvents some unjustly ignored ones, such as Toennies, Harrisson, and Wilson. The book critically examines popular modern research strategies such as polling and the 'spiral of silence' model and looks at the role of mass media in the formation and expression of public opinion.

ABSTRACT George Bishop’s The Illusion of Public Opinion does a superb job of showing how various errors and malfeasances in conducting and interpreting surveys have created illusions about public opinion. It thereby offers a very useful compendium on how to do, and especially how not to do, survey research. Nothing in the book, however, provides persuasive evidence for either of two more troubling “illusion” arguments: that collective public preferences on policy issues do not exist; (...) or that surveys cannot measure them. Instead, Bishop’s examples show that even in obscure, low‐information situations, well‐designed survey questions generally reveal meaningful collective policy preferences that are coherent, well differentiated, and reflective of citizens’ basic interests and values. (shrink)

This paper considers the relation between philosophical discussions of, and social-scientific research into popular beliefs about, distributive justice. The first part sets out the differences and tensions between the two perspectives, identifying considerations which tend to lead adherents of each discipline to regard the other as irrelevant to its concerns. The second discusses four reasons why social scientists might benefit from philosophy: problems in identifying inconsistency, the fact that non-justice considerations might underlie distributive judgments, the way in which different (...) principles of justice can yield the same concrete distributive judgments, and the ambiguity of key terms. The third part distinguishes and evaluates three versions of the claim that normative theorising about justice can profit from empirical research into public opinion: that its findings are food for thought, that they amount to feasibility constraints, and that they are constitutive of normatively justified principles of justice. The view that popular opinion about justice has a strongly constitutive role to play in justifying principles of distributive justice stricto sensu is rejected, but it is argued that what the people think (and what they can reasonably be expected to come to think) on distributive matters can be an important factor for the political theorist to take into account, for reasons of legitimacy, or feasibility, or both. (shrink)

The rapid development of Internet technology has facilitated the dissemination of information that can threaten national security and public health, and effectively controlling the process of public opinion communication is an important topic in contemporary social network research. This paper establishes an official information-controlled public opinion propagation model based on the delay, latency, and conversion of public opinion communication under the control of official information. According to the influence and importance of the (...) network nodes, we theoretically derive the attitude conversion probability of the nodes, making the model more in line with the actual situation. Through actual cases, we analyzed the important influence of official information on the public opinion communication process and provided a theoretical basis for the government and relevant departments to supervise and correctly guide the public opinion network, which has certain practical significance. (shrink)

Media has paid more attention recently on environmental issues caused by construction companies which imposes public opinion pressure on construction companies and could potentially impact their decision-making processes for green innovations. However, research on the relationship between public opinions pressure and construction company green innovation behavior is still limited. To understand how such public opinions pressure can impact construction companies' green transition and formulate advice accordingly, it is necessary to use empirical data to find the (...) correlations. Therefore, this research has gathered questionnaire data of the construction companies in Chengdu-Chongqing economic circle of China to study the influencing mechanism of environmental public opinion pressure on enterprise green innovation behavior, analyzes the realization path of leaders' environmental intention as a mediating variable in the impact of environmental public opinion pressure on enterprise green innovation behavior, and reveals the role boundary of environmental regulation as a moderating variable in the impact of environmental public opinion pressure on enterprise green innovation behavior. The results show that environmental public opinion pressure has a significant positive impact on enterprise green innovation behavior. More specifically, enterprise green innovation behavior is affected by leaders' environmental intention and the latter plays a partial mediating role between environmental public opinion pressure and enterprise green innovation behavior. Environmental regulation also enhances the sensitivity of companies to environmental public opinion pressure, and therefore can significantly strengthen the relationship between environmental public opinion pressure and enterprise green innovation behavior. Further research find that, compared with incentive-based environmental regulations, mandatory environmental regulations make companies more sensitive to environmental public opinion pressure and has a more significant positive moderating effect. The research conclusions could be used to provide theoretical reference with empirical data for accelerating the green innovation transformation and promoting the high-quality development in the construction industry. (shrink)

Anticipatory policy for gene editing requires assessing public opinion about this new technology. Although previous surveys have examined respondents’ views on the moral acceptability of various hypothetical uses of CRISPR, they have not considered whether these scenarios are perceived as plausible. Research in construal level theory indicates that participants make different moral judgments about scenarios seen as likely or near and those seen as unlikely or distant. Therefore, we surveyed a representative sample of 400 Americans and Canadians (...) about both the likelihood and the permissibility of 23 commonly discussed uses of gene editing. Respondents with more knowledge of gene editing generally thought these applications would be more likely within the next 20 years. There was a strong positive relationship between the perceived likelihood and permissibility of most CRISPR applications. Our results suggest that ongoing public engagement efforts for gene editing could be improved by taking its perceived time-frames into account. (shrink)

Empirical research on public opinion has tended to misjudge the normative rationales for modern democracy. Although it is often presumed that citizens' policy preferences are the opinions of interest to democratic theorists, and that democracy requires a highly informed citizenry, neither of these premises represents a dominant position in mainstream democratic theory. Besides incorrect assumptions about major tenets of democratic theory, empirical research on civic engagement is running into dead ends that will require normative analysis to (...) overcome. Bringing political philosophy back in to the study of public opinion can not only remedy shortcomings in the empirical literature, but can also underscore how relevant that literature is for a wide range of problems in democratic practice. (shrink)

Animal research remains a deeply controversial topic in biomedical science. While a vast amount has been written about the ethical status of laboratory animals, far less academic attention has been devoted to the public and, more specifically, to public opinion. Rather than what the public think, this article considers the role of ‘public opinion’. It draws on a recent empirical study which involved interviews with laboratory scientists who use animals in their research, (...) and with other UK stakeholders. The first section of the paper demonstrates that public opinion has become a kind of resource in the animal research debate. Public opinion polls, in particular, are frequently cited. The second section explores this further and argues that, for all sides, appealing to public opinion is a key way to show legitimacy. Finally, the paper shifts gear to consider whether public opinion should matter, both for ethical reasoning and for science policy. (shrink)

How to strengthen emergency management and improve the ability to prevent and respond to emergencies is an important part of building a harmonious socialist society. This paper proposes a domain emotion dictionary construction method for network public opinion analysis of public emergencies. Using the advantages of corpus and semantic knowledge base, this paper extracts the seed words based on the large-scale network public opinion corpus and combined with the existing emotion dictionary, trains the word vector (...) through the word2vec model in deep learning, expands the emotion words, and obtains the candidate emotion words according to the semantic similarity calculation, So as to generate a domain emotion dictionary. The accuracy rate of emotion discrimination by the emotion dictionary constructed in this paper is 0.86, the recall rate is 0.92. Through the verification of accuracy and recall rate, the construction method proposed in this paper has good accuracy and reliability. Because of the great differences in different experiences and situations of different groups, there will be great differences in views and perspectives on the same event. The key to prevent the public from blindly following the crowd should be to reach groups close to emotional distance, and targeted prevention and control of public opinion can be conducted according to different characteristics of different groups. (shrink)

Data fraud and selective reporting both present serious threats to the credibility of science. However, there remains considerable disagreement among scientists about how best to sanction data fraud, and about the ethicality of selective reporting. The public is arguably the largest stakeholder in the reproducibility of science; research is primarily paid for with public funds, and flawed science threatens the public’s welfare. Members of the public are able to make meaningful judgments about the morality of (...) different behaviors using moral intuitions. Legal scholars emphasize that to maintain legitimacy, social control policies must be developed with some consideration given to the public’s moral intuitions. Although there is a large literature on popular attitudes toward science, there is no existing evidence about public opinion on data fraud or selective reporting. We conducted two studies—a survey experiment with a nationwide convenience sample, and a follow-up survey with a representative sample of US adults —to explore community members’ judgments about the morality of data fraud and selective reporting in science. The findings show that community members make a moral distinction between data fraud and selective reporting, but overwhelmingly judge both behaviors to be immoral and deserving of punishment. Community members believe that scientists who commit data fraud or selective reporting should be fired and banned from receiving funding. For data fraud, most Americans support criminal penalties. Results from an ordered logistic regression analysis reveal few demographic and no significant partisan differences in punitiveness toward data fraud. (shrink)

The issue of religious freedom while serving a sentence of imprisonment often occupies scientists from around the world. Basically, they agree that a prisoner, regardless of the act for which he or she has been convicted, has the right to religious freedom. Problems are posed, however, by the question of delimiting this freedom, especially at the level of the right to practise a chosen religion during prison isolation. The decisions of international tribunals and national courts are not uniform owing to (...) the generality of the rules governing this issue. The initial research question that we pose is this: how does society perceive the right to religious freedom in prisons? Does a convict have the right to demand respect for the rules of his or her religion regarding diet, clothes, appearance and participation in religious services? We look for answers to these questions in research conducted in Polish society, one that is confronted by international regulations. (shrink)

Public opinion surveys and polls have a long history as tools for the reportage of public sentiment. Born in the “straw polls” of nineteenth century politics, their use expanded in the last century to include a range of commercial and social subjects. In recent decades, these have included issues of medico-legal uncertainty including, in a partial list, abortion, fetal tissue research, and the propriety of medical termination. Because public opinion surveys are assumed to be (...) “scientific,” and thus unbiased, there has been little discussion of either their suitability in areas of complex, medico-legal uncertainty or the ethics of their use in these areas. This paper reviews their general history and then their use in the debate over medical termination, often called “medical aid in dying.” In this review, two problems are highlighted. First, there is the ambiguous nature of polls and the manner of their construction. Second, there is the manner in which they are deployed as simple and definitive statements in areas of complex medico-legal debate. The result calls for caution in their use by ethicists and a clear duty by both academics and journalists to understand the limits of the medium in areas of medico-legal debate and discussion. (shrink)

We present a short introduction to, and the first English language translation of, Theodor W. Adorno's 1964 article, "Meinungsforschung und Öffentlichkeit." In this article, Adorno situates the misunderstanding of public opinion within a dialectic of elements of publicness itself: empirical publicness' dependence on a normative ideology of publicness, and modern publicness' tendency to undermine its own principles. He also locates it in the dual role of mass media as both fora for the expression of opinion and, as (...) he calls them, "organs of public opinion." The introduction provides a discussion of Adorno's reception in the American academy, arguing that contemporary sociological practice should be concerned with the problems Adorno raises. We suggest that Adorno's relegation to the fields of philosophy and aesthetics belies his relevance to empirical sociological research. (shrink)

Public pressure is essential for providing multinational enterprises (MNEs) with motivation to follow the standards of human rights conduct set in soft-law instruments, such as the United Nations Guiding Principles on Business and Human Rights. But how does the public judge MNE involvement in human rights violations? We empirically answer this question drawing on an original survey of American adults. We asked respondents to judge over 12,000 randomly generated scenarios in which MNEs may be considered to have been (...) involved in human rights violations. Our findings reveal substantial gaps between public judgments and the standards set in soft law and the normative literature. We identify the attributes of episodes of human rights violations involving MNEs that influence public judgments, including the relationship between the MNE and the perpetrator, the practice of due diligence, and the type of abuse. These results provide insights as to when we might expect public pressure to drive MNE compliance with soft-law instruments, and they direct attention to specific standards that will likely require stronger, ‘hard’ law approaches or broader efforts to shift the public’s view. (shrink)

This article focuses on the multidimensional construction of the multimedia network public opinion supervision mechanism, puts the research on the background of the era of big data, and based on the analysis and definition of the difference between network public opinion and network public opinion, deeply summarizes the network public opinion in the era of big data. New features analyze the opportunities and challenges faced by online public opinion in (...) the era of big data. Based on the rational construction of the index system, this paper studies the multimedia network public opinion evaluation and prediction algorithm. Existing network public opinion assessment and prediction algorithms have shortcomings in capturing the characteristics of data sequences and the long-term dependence of data sequences, and the problems of overfitting and gradient disappearance may occur during training. Because of the above problems, based on the long-term and short-term memory network model, a regularized method is used to construct a multimedia network public opinion prediction model algorithm. This paper builds a multimedia network public opinion threat rating evaluation model based on the public opinion supervision prediction model and conducts analysis. The model constructed this time can not only improve the accuracy of public opinion assessment and prediction but also better avoid the problem of gradient disappearance and overfitting. (shrink)

We report the results of an exploratory study that examines the judgments of climate scientists, climate policy experts, astrophysicists, and non-experts (N = 3367) about the factors that contribute to the creation and persistence of disagreement within climate science and astrophysics and about how one should respond to expert disagreement. We found that, as compared to non-experts, climate experts believe that within climate science (i) there is less disagreement about climate change, (ii) methodological factors play less of a role in (...) generating disagreements, (iii) fewer personal or institutional biases influence climate research, and (iv) there is more agreement about which methods should be used to examine relevant phenomena we also observed that the uniquely American political context predicted experts’ judgments about some of these factors. We also found that, in regard to disagreements concerning cosmic ray physics, and commensurate with the greater inherent uncertainty and data lacunae in their field, astrophysicists working on cosmic rays were generally more willing to acknowledge expert disagreement, more open to the idea that a set of data can have multiple valid interpretations, and generally less quick to dismiss someone articulating a non-standard view as non-expert, than climate scientists were in regard to climate science. (shrink)

This collection represents the latest research from leading scholars whose work has helped to frame our understanding of Bentham since the publication of H. L. A. Hart's Essays on Bentham. The authors explore fundamental areas of Bentham's thought, including the relationship between the rule of law and public opinion; law and popular prejudices or manipulated tastes; Bentham's methodology versus Hart's; sovereignty and codification; and the language of natural rights. Drawing on original manuscripts and volumes in The Collected (...) Works of Jeremy Bentham, the chapters combine philosophical and historical approaches and offer new and more faithful interpretations of Bentham's legal philosophy and its development. As a coherent whole, the book challenges the dominant understandings of Bentham among legal philosophers and rescues him from some famous mischaracterizations. (shrink)

Previous research (e.g., Horiuchi, Goldsmith, and Inoguchi, 2005) has shown some intriguing patterns of effects of several variables on international public opinion about US foreign policy. But results for the theoretically appealing effects of regime type and post-materialist values have been weak or inconsistent. This paper takes a closer look at the relationship between these two variables and international public opinion about US foreign policy. In particular, international reaction to the wars in Afghanistan (2001) and (...) Iraq (2003) are examined using two major multinational surveys. The conclusions of previous research are largely reinforced: neither regime type nor post-materialist values appears to robustly influence global opinion on these events. Rather, some central interests, including levels of trade with the US and NATO membership, and key socialized factors, including a Muslim population, experience with terrorism, and the exceptional experiences of two states (Israel, Albania) emerge as the most important factors in the models. There is also a consistent backlash effect of security cooperation with the US outside of NATO. A discussion of these preliminary results points to their theoretical implications and their significance for further investigation into the transnational dynamics of public opinion and foreign policy. (shrink)

This article seeks to address current debates comparing polls and opinion mining as empirically based figuration models of public opinion in the light of in-depth intellectual debates on the role and nature of public opinion that began after the French Revolution and the controversy over public opinion spurred by the invention of polls. Issues of historical quantification and re-conceptualisation of public opinion are addressed in four parts. The first summarises the history (...) of the rise and fall of the concept of public opinion. The second re-examines the key controversies in the debates on the theoretical, empirical and social implications and consequences of the invention of polling. The third part scrutinises the datafication of public opinion that started with polling industry and continues in the age of big data and data mining. The final section discusses the controversial potentials of opinion-mining technology and suggests ways in which social scientists could critically respond to the big data and opinion-mining challenges in order to reintegrate the ideas of publicness, the public and public sphere into public opinion research. (shrink)

This study examines how different forms of media use predict attitudes toward the development of facial recognition technology (FRT) and applications of it by law enforcement to identify criminal suspects, identify potential terrorists, and monitor public protests. The theoretical framework builds on theories of cultivation and genre-specific viewing to develop hypotheses and research questions. The analyses draw on original data from two nationally representative surveys of the U.S. public conducted in 2020, amid a series of controversies and (...) protests about policing and racial justice. The results demonstrate that overall television viewing and crime media viewing predicted support for multiple uses of FRT, while Fox News viewing predicted support for using FRT to monitor protests. The findings advance our understanding of public opinion toward the technology and its implications for policing, protests, and social justice. (shrink)

Vox pops, interviews with ordinary people on the street, are one of the most common ways to represent public opinion in television news. Research found that they influence audience judgments more than static base-rate information such as poll results. However, little research has compared vox pops with vivified base-rate information. Most research studying vox pops assumed they are included in the news because of their apparent attractiveness and trustworthiness to audiences. Using a television news experiment (...) comparing statistical base-rate information vivified by an expert with vox pop statements, this study shows that news items containing vox pop statements are perceived as being less attractive and trustworthy than items containing the expert statement. No difference is found between the two types of public opinion information in their influence on perceived public opinion, but vox pops do influence audiences’ personal opinion more strongly. (shrink)

Scientific-technological innovation (particularly in the field of transgenic foods and cloning), scientific journalism and public opinion all share a complex relationship. The rupture of internal consensus among the scientific community, the role played by scientific journalists as "mediators" and the differentiation between what can be referred to as the "informed public" or "epistemological leaders" and the rest of the population were the starting point for our research on the impact of news related to biotechnological advances. In (...) this paper we will show the principal characteristics of the discourse on this type of news among what we can call the "informed public". From there, we will establish a set of strategies for improving the level of scientific-technological alphabetisation in our complex societies. (shrink)

This research focuses on the Turkish government’s communications with the international community with regard to Syrian refugees. I use the Discourse Historical Approach to reveal and compare the discursive strategies that the official Turkish news agency has used as part of its public diplomacy efforts in their mass communication efforts regarding Syrian refugees during the last 8 years. The results reveal how a humanitarian issue such as the plight of refugees might be employed to establish a government’s political (...) position, affirm its involvement and influence public opinion about a conflict that exceeds national boundaries and has turned into a challenge for international dominance involving world superpowers. The topics highlighted in the Turkish news reports and the argumentations that these reports put forward reveal that the Turkish government is highly critical of the international community, especially Western powers, for not fulfilling their humanitarian responsibilities. This specific criticism from Turkey regarding its outsized role in hosting refugees has become a leverage point to claim a place in the decision table about the future of Syria. (shrink)

The current paper discusses the peer review process in journals that publish research papers purveying new science and understandings. Different aspects of peer review including the selection of reviewers, the review process and the decision policy of editor are discussed in details. Here, the pros and cons of different conventional methods of review processes are mentioned. Finally, a suggestion is presented for the review process of scientific papers.

Background There has been considerable investment and strategic planning to introduce genomic testing into Australia’s public health system. As more patients’ genomic data is being held by the public health system, there will be increased requests from researchers to access this data. It is important that public policy reflects public expectations for how genomic data that is generated from clinical tests is used. To inform public policy and discussions around genomic data sharing, we sought (...) class='Hi'>public opinions on using genomic data contained in medical records for research purposes in the Australian state of Queensland. Methods A total of 1494 participants completed an online questionnaire between February and May 2019. Participants were adults living in Australia. The questionnaire explored participant preferences for sharing genomic data or biological samples with researchers, and concerns about genomic data sharing. Results Most participants wanted to be given the choice to have their genomic data from medical records used in research. Their expectations on whether and how often they needed to be approached for permission on using their genomic data, depended on whether the data was identifiable or anonymous. Their willingness to sharing data for research purposes depended on the type of information being shared, what type of research would be undertaken and who would be doing the research. Participants were most concerned with genomics data sharing that could lead to discrimination, data being used for marketing, data security, or commercial use. Conclusions Most participants were willing to share their genomic data from medical records with researchers, as long as permission for use was sought. However, the existing policies related to this process in Queensland do not reflect participant expectations for how this is achieved, particularly with anonymous genomics data. This inconsistency may be addressed by process changes, such as inclusion of research in addition to clinical consent or general research data consent programs. (shrink)

This study examines Japanese reactions to neighboring countries’ behavior by addressing possible micro-motives, such as patriotism, the rational demand for national defense, and retrospective policy evaluation. This theoretical development leads to distinctive hypotheses from different motivations and directly tests them using macro-data . This research will apply this framework to Japanese politics and will show that foreign threats stimulate patriotism in the public mind and enhance political support for national leaders. It will also demonstrate that the Japanese (...) class='Hi'>public has no optimistic view of the new prime minister and that the honeymoon effect in previous research may be confounded with the patriotic effect because the new leader is less experienced and is often challenged by foreign countries. (shrink)

ABSTRACT Background: Explaining technical terms in consent forms prior to seeking informed consent to recruit into trials can be challenging in developing countries, and more so when the studies are randomized controlled trials. This study was carried out to examine the opinions of researchers on ways of dealing with these challenges in developing countries. Methods: Recorded in‐depth interviews with 12 lecturers and five doctoral students, who had carried out research in developing countries, at a leading school of public (...) health in the United Kingdom. A purposive, snowballing approach was used to identify interviewees. Results: Researchers were divided on the feasibility of explaining technical trials in illiterate populations; the majority of them held the view that local analogies could be used to explain these technical terms. Others were of the opinion that this could not be done since it was too difficult to explain technical trials, such as randomized controlled trials, even to people in developed countries. Conclusion: Researchers acknowledged the difficulty in explaining randomized controlled trials but it was also their perception that this was an important part of the ethics of the work of scientific research involving human subjects. These difficulties notwithstanding, efforts should be made to ensure that subjects have sufficient understanding to consent, taking into account the fact that peculiar situations in developing countries might compound this difficulty. (shrink)

Background: Explaining technical terms in consent forms prior to seeking informed consent to recruit into trials can be challenging in developing countries, and more so when the studies are randomized controlled trials. This study was carried out to examine the opinions of researchers on ways of dealing with these challenges in developing countries.Methods: Recorded in‐depth interviews with 12 lecturers and five doctoral students, who had carried out research in developing countries, at a leading school of public health in (...) the United Kingdom. A purposive, snowballing approach was used to identify interviewees.Results: Researchers were divided on the feasibility of explaining technical trials in illiterate populations; the majority of them held the view that local analogies could be used to explain these technical terms. Others were of the opinion that this could not be done since it was too difficult to explain technical trials, such as randomized controlled trials, even to people in developed countries.Conclusion: Researchers acknowledged the difficulty in explaining randomized controlled trials but it was also their perception that this was an important part of the ethics of the work of scientific research involving human subjects. These difficulties notwithstanding, efforts should be made to ensure that subjects have sufficient understanding to consent, taking into account the fact that peculiar situations in developing countries might compound this difficulty. (shrink)

Background: Use of patients’ medical data for secondary purposes such as health research, audit, and service planning is well established in the UK. However, the governance environment, as well as public understanding about this work, have lagged behind. We aimed to systematically review the literature on UK and Irish public views of patient data used in research, critically analysing such views though an established biomedical ethics framework, to draw out potential strategies for future good practice guidance (...) and inform ethical and privacy debates. Methods: We searched three databases using terms such as patient, public, opinion, and electronic health records. Empirical studies were eligible for inclusion if they surveyed healthcare users, patients or the public in UK and Ireland and examined attitudes, opinions or beliefs about the use of patient data for medical research. Results were synthesised into broad themes using a framework analysis. Results: Out of 13,492 papers and reports screened, 20 papers or reports were eligible. While there was a widespread willingness to share patient data for research for the common good, this very rarely led to unqualified support. The public expressed two generalised concerns about the potential risks to their privacy. The first of these concerns related to a party’s competence in keeping data secure, while the second was associated with the motivation a party might have to use the data. Conclusions: The public evaluates trustworthiness of research organisations by assessing their competence in data-handling and motivation for accessing the data. Public attitudes around data-sharing exemplified several principles which are also widely accepted in biomedical ethics. This provides a framework for understanding public attitudes, which should be considered in the development in any guidance for regulators and data custodians. We propose four salient questions which decision makers should address when evaluating proposals for the secondary use of data. (shrink)

BackgroundStigma refers to a distinguishing personal trait that is perceived as or actually is physically, socially, or psychologically disadvantageous. Little is known about the opinion of those who have more or less stigmatizing health conditions regarding the need for consent for use of their personal information for health research.MethodsWe surveyed the opinions of people 18 years and older with seven health conditions. Participants were drawn from: physicians' offices and clinics in southern Ontario; and from a cross-Canada marketing panel (...) of individuals with the target health conditions. For each of five research scenarios presented, respondents chose one of five consent choices: (1) no need for me to know; (2) notice with opt-out; (3) broad opt-in; (4) project-specific permission; and (5) this information should not be used. Consent choices were regressed onto: demographics; health condition; and attitude measures of privacy, disclosure concern, and the benefits of health research. We conducted focus groups to discuss possible reasons for observed consent choices.ResultsWe observed substantial variation in the control that people wish to have over use of their personal information for research. However, consent choice profiles were similar across health conditions, possibly due to sampling bias. Research involving profit or requiring linkage of health information with income, education, or occupation were associated with more restrictive consent choices. People were more willing to link their health information with biological samples than with information about their income, occupation, or education.ConclusionsThe heterogeneity in consent choices suggests individuals should be offered some choice in use of their information for different types of health research, even if limited to selectively opting-out. Some of the implementation challenges could be designed into the interoperable electronic health record. However, many questions remain, including how best to capture the opinions of those who are more privacy sensitive. (shrink)

In emergency research, obtaining informed consent can be problematic. Research to develop and improve treatments for patients admitted to hospital with life-threatening and debilitating conditions is much needed yet the issue of research without consent (RWC) raises concerns about unethical practices and the loss of individual autonomy. Consistent with the policy and practice turn towards greater patient and public involvement in health care decisions, in the US, Canada and EU, guidelines and legislation implemented to protect patients (...) and facilitate acute research with adults who are unable to give consent have been developed with little involvement of the lay public. This paper reviews research examining public opinion regarding RWC for research in emergency situations, and whether the rules and regulations permitting research of this kind are in accordance with the views of those who ultimately may be the most affected. (shrink)

BACKGROUND: It can be argued that the ethical conduct of research involves achieving a balance between the rights and needs of three parties-potential research participants, society, and researchers. Local Research Ethics Committees (LRECs) have a number of roles and functions in the research enterprise, but there have been some indications that LREC members, researchers and the public can have different views about these responsibilities. Any such differences are potential sources of disagreement and misunderstanding. OBJECTIVES: To (...) compare the views of LREC members, researchers and the public towards the roles and functions of LRECs. DESIGN: A questionnaire that contained items concerned with a variety of such roles was distributed to general practice patients (as proxies for potential research participants), researchers and LREC members. FINDINGS: While general practice patients believed that the main function of LRECs is to ensure that research participants come to no harm, LREC members were more concerned with the protection of participants' rights. There was also some disagreement between members and researchers with regard to the consideration of proposals on the grounds of scientific merit. CONCLUSIONS: Local Research Ethics Committee members need to be aware of potential differences in views, that they ought to make their priorities clear, and that membership of LRECs ought to reflect the views of both researchers and potential research participants. (shrink)

Survey data are presented on opinions about agricultural biotechnology and its applications held by agricultural science faculty at highly ranked programs in the United States with and without personal involvement in biotechnology-oriented research. Respondents believed biotech holds much promise, but policy positions vary. These results underscore the relationship between opinion and stakeholder interests in this research, even among scientific experts. Media accounts are often seen as causes, rather than artifacts, of the existence of public controversy; European (...) and now U.S. opposition to food biotechnology is often explained away in terms of such a relationship. The authors argue that where even experts are divided, public opposition cannot reasonably be attributed to poor public understanding or sensationalistic media accounts. Ethical implications for communicating science are explored. (shrink)

Countries, companies and farming communities are increasingly involved in issues of sharing and protecting plant genetic resources, knowledge and technologies. Intellectual Property Rights and Access and Benefit-Sharing policies currently regulate the transfer and usage of much of this genetic material, information and related production, which is employed in multiple research projects involving public research institutes. Strikingly, not much is known about how these institutes deal with the transfer and usage regulations. And what, furthermore, are their responsibilities while (...) serving a civil society in which there is such a range of diverging interests in and opinions about such regulations? In order to shed more light on these questions, two public research institutes will here be studied, the International Potato Centre in Peru and Wageningen University & Research Centre in the Netherlands. These institutes are both heavily involved in research into genetic resources, knowledge and technologies related to the potato, and work together with a wide spectrum of stakeholders that have a direct interest in the sharing and/or protection of these resources. The two institutes are continuously weighing up the various stakeholder interests in their attempts to strike a balance between policies geared towards sharing and those aimed at protection. It will be argued that public research institutes must dare to share, and that they need to develop new ways of sharing and protecting in order to adhere to their mission and best serve the public interest. (shrink)

Countries, companies and farming communities are increasingly involved in issues of sharing and protecting plant genetic resources, (traditional) knowledge and technologies. Intellectual Property Rights and Access and Benefit-Sharing policies currently regulate the transfer and usage of much of this genetic material, information and related production, which is employed in multiple research projects involving public research institutes. Strikingly, not much is known about how these institutes deal with the transfer and usage regulations. And what, furthermore, are their responsibilities (...) while serving a civil society in which there is such a range of diverging interests in and opinions about such regulations? In order to shed more light on these questions, two public research institutes will here be studied, the International Potato Centre in Peru and Wageningen University & Research Centre in the Netherlands. These institutes are both heavily involved in research into genetic resources, knowledge and technologies related to the potato, and work together with a wide spectrum of stakeholders that have a direct interest in the sharing and/or protection of these resources. The two institutes are continuously weighing up the various stakeholder interests in their attempts to strike a balance between policies geared towards sharing and those aimed at protection. It will be argued that public research institutes must dare to share, and that they need to develop new ways of sharing and protecting in order to adhere to their mission and best serve the public interest. (shrink)

Due to the Reform and Openness of China’s market, Chinese people are increasingly aware of subjective and civic consciousness. What’s more, the attention to and demand for public affairs, public life and public spirit is increasing. Correspondingly, the research on publicness is becoming an academic hotspot, and divergent opinions are inevitable. This paper discusses publicness from the philosophical perspective. The difference between eastern and western contexts and disciplinary perspectives is noteworthy as is a self-conscious critical spirit (...) and democratic consciousness of enlightenment. Finally, the real problems of contemporary China should be focused on, so that research on publicness can play its due role in the realization of China’s modernization. (shrink)