Healthcare professionals’ perceptions of risk in the context of genetic testing for the prediction of chronic disease: a qualitative metasynthesis

Advances in genomic technologies and a growing trend towards stratified and preventive approaches to medicine mean that increasing numbers of individuals may have access to information about their genetic makeup, and their risk of developing diseases. This is likely to impact on healthcare professionals involved in the delivery of genetic tests, or in supporting patients who are affected by a disease with a genetic risk factor. It is therefore important to understand healthcare professionals’ perceptions about providing these services, and how they feel about communicating information about genetic risk to patients. This paper provides a systematic review and metasynthesis of qualitative research exploring healthcare professionals’ perceptions of genetic risk in the context of predictive genetic testing for chronic disease. Healthcare professionals expressed a range of reservations about the utility of predictive testing in this context. Professionals judged patients’ understanding of risk information to be limited and subject to bias and a range of sociocultural influences. Concerns about the psychosocial impact of genetic risk information were frequently cited, both in relation to individual patients and the wider impact on their families and communities. The need for provision of multidisciplinary support was described. The concept of responsibility was also an important theme. Healthcare professionals recognized the responsibility that accompanies risk knowledge, and that ultimately this responsibility lies with the patient, not the provider. Our analysis suggests that professionals’ evaluation of the utility of predictive genetic testing is influenced not only by resource deficits, but may also be interpreted as a response to challenging ethical and social issues associated with genetic risk, that are not well aligned with current medical practice.     

Capturing how individuals perceive genetic risk information: a phenomenological perspective

The prevailing scientific approach to genetic risk information centres around communication of risk in terms of numerical probabilities. However, it is well known that individuals have difficulties in understanding and making sense of this information in their own lives. There is, accordingly, a need to investigate whether any methodologies in psychological research may shed light on how individuals perceive genetic risk information within their specific contexts of family history, personal relationships, lifestyles and future plans. To explore whether hermeneutic phenomenology and methodology may offer a deeper understanding of an individual’s perception of having a hereditary predisposition, we conducted a literature search. We found that Interpretative Phenomenological Analysis may be a fruitful approach to an individual’s lived experiential world. The studies analysed showed how individuals interpret information about genetic risk in the light of their own beliefs about the multiple causes of illness, patterns of heredity and observable risk factors in their families. People’s understanding of their experience is derived from an intricate interconnectedness with others that arises in the context of a world shaped in equal measure by language and culture, on the one hand, and bodies and objects on the other.     

Genetic risk and value

A conceptual truth about risks is that they involve a possible and future adverse effect or a negative value of some kind. The genetic risks that individuals may face in the health care setting differ in some crucial respects to other kind of risks. The aims of this paper are to analyse the notion of value in the context of genetic risk in the setting of health care, and to suggest a conception of the evaluative aspect of genetic risk that is fruitful for genetic risk information. Two influential and relevant approaches to value, preferentialism and the capability approach, are discussed in the light of certain distinctive features of genetic risk and a third, a sensibility theory of value is suggested. According to this view, the concept of risk is a so-called ‘thick’ evaluative concept that has both a world-guiding function as well as an action-guiding or normative function. It is argued that this provides a more promising way to think about genetic risks in the clinical setting.     

Perceptions of predictive testing for those at risk of developing a chronic inflammatory disease: a meta-synthesis of qualitative studies*

Background: The availability of tests to predict the risk of developing chronic diseases is increasing. The identification of individuals at high risk of disease can trigger early intervention to reduce the risk of disease and its severity. In order for predictive tests to be accepted and used by those at risk, there is a need to understand people’s perceptions of predictive testing. Method: A meta-synthesis of qualitative research that explored patient and public perceptions of predictive testing for chronic inflammatory diseases was conducted. Studies were coded by researchers and patient research partners, and then organised into common themes associated with the acceptability or use of predictive testing. Results: Perceived barriers to predictive testing were identified, including a concern about a lack of confidentiality around the use of risk information; a lack of motivation for change; poor communication of information; and a possible impact on emotional well-being. In order to reduce these barriers, the literature shows that a patient-centred approach is required at each stage of the testing process. This includes the consideration of individual needs, such as accessibility and building motivation for change; readily available and easy to understand pre and post-test information; support for patients on how to deal with the implications of their results; and the development of condition specific lifestyle intervention programmes to facilitate sustainable lifestyle changes. Conclusion: Patients and members of the public had some concerns about predictive testing; however, a number of strategies to reduce barriers and increase acceptability are available. Further research is required to inform the development of a resource that supports the individual to make an informed decision about whether to engage in a predictive test, what test results mean, and how to access post-test support.     

Antecedent factors of the need for information regarding petrochemical complex hazards

Information transparency is a relevant factor nowadays. The current legislation has forced hazardous companies to improve their communication policy with the local community, but this entails the difficulty that each individual has a different need for information. This study considers the main antecedents of need for information to explain these differences. The paper analyses, to our knowledge for the first time, the direct influence of personal beliefs about environmental issues on the individual’s need for information. The research focused on the residents (992) of an area near to a petrochemical complex. The results, derived from the structural equation modelling analysis, confirmed the influence of environmental beliefs, trust in companies and negative affective response on the need for information. In the light of these results, we recommend that the companies of the complex develop a risk communication policy based on personal environmental beliefs, in order to understand the public’s concerns and their needs for risk information. Finally, the analysed companies need to see risk communication as a long-term and ongoing process that involves active dialogue and enables stakeholders’ participation, with the aim of establishing a communication network.     

Genetic risk information

Risk information and communication of health risks play a large role in medicine. With the growing importance of genetics and genomics in medicine, the importance of risk communication will even increase in the future. This paper starts with a discussion on the concept of medical risk information and then focusses on genetic risk information. Three examples of genetic risk information are discussed (carrier testing, susceptibility testing and pharmacogenomics testing) in order to exemplify the broad variety of types of risk information and their specific challenges for medical counselling.     

The determinants of integrating policy-based and community-based adaptation into coastal hazard risk management: a resilience approach

Abstract

A growing number of studies focus on improving the understanding of how the households’ adaptations can be encouraged in the process of coastal hazards and risk management. Particularly, this process is undergoing a major paradigm shift as it moves from an approach dominated by policy-based adaptation to another one in which community-based resilience building is favored. Thus, this article aims to apply a resilience approach to improve the knowledge about how public measures influence private autonomous adaptation behavior, through a transdisciplinary investigation of household adaptation behavior and its determinants. The Resilience Framework of Household Autonomous Adaptation to Climate- and Weather-Related Hazard Risks (ROHACHR) is proposed and combined with a focus group meeting and multivariate analysis to compare pre-disaster, during a disaster, post-disaster adaptations, and resilience behavior of households. Using an empirical survey of the households in three coastal municipalities in Taiwan, we examine the relationships between public measures and private adaptations that provides three distinguishing types of household behavior: ‘core’, ‘trust in governmental aid’, and ‘awareness and structures’. Results show that providing hazard risk information may be one step toward encouraging private autonomous adaptations. Several factors that help foster resilience also appear to be influential in households’ adaptation decisions, such as specific and positive governmental aid, information trust, and social capital. Based on these results, it shows that the ROHACHR is useful to characterize households’ adaptation and resilience behavior and explain how they respond to public measures. Finally, the policy implications of our findings for improving resilience of coastal communities and encouraging public-private collaboration in the process of hazard risk management are discussed.     

Cultural theory and risk perception: a proposal for a better measurement

Why do members of the public disagree – sharply and persistently – about facts on which expert scientists largely agree? We designed a study to test a distinctive explanation: the cultural cognition of scientific consensus. The ‘cultural cognition of risk’ refers to the tendency of individuals to form risk perceptions that are congenial to their values. The study presents both correlational and experimental evidence confirming that cultural cognition shapes individuals’ beliefs about the existence of scientific consensus, and the process by which they form such beliefs, relating to climate change, the disposal of nuclear wastes, and the effect of permitting concealed possession of handguns. The implications of this dynamic for science communication and public policy‐making are discussed.     

Communication of risk assessment information to risk managers

This article describes the results of a two-phase study of risk communication between risk assessors and risk managers (including policy makers). The first phase consisted of telephone interviews with 30 air quality risk managers from all levels (18 from local, state, and regional offices, and 12 from national offices). The second phase involved a focus group with 11 senior EPA risk managers representing a broad range of EPA national offices and programmes. The two-hour focus group elicited responses from the risk managers to specific examples of videotaped risk information created by agency risk assessors. The risk managers indicated their interests in hearing both qualitative and quantitative information about risk and emphasized the importance of discussing other information about the decision context. Similar responses to the videotaped risk information were elicited from a class of students at the Harvard School of Public Health. This exploratory work suggests that to better inform risk managers, risk assessors must also appreciate and present the broader context of the decision, and they must convey how uncertainties and weaknesses in the assessment may influence stakeholder perceptions of risk and the effectiveness of different risk management options. Further research on how to communicate risk information to risk managers is recommended.     

Economic policy uncertainty and stock price crash risk

This paper studies the impact of economic policy uncertainty on stock price crash risk using data from China. We develop a new index to measure Chinese economic policy uncertainty and find that economic policy uncertainty has a remarkable positive effect on stock price crash risk. However, the effect reverses later. The results also indicate that the positive effect of economic policy uncertainty on stock price crash risk is more prominent for state‐owned enterprises. Moreover, this effect is more prominent for firms with higher information asymmetry and firms with greater disagreement among investors, indicating that economic policy uncertainty affects crash risk through two mechanisms: managers’ concealment of bad news and investors’ heterogeneous beliefs.     

Perception of technological risk: insights from research and lessons for risk communication and management

Technology has become a familiar companion in all areas of life. Production consumption, administration, education, communication, and leisure activities are all shaped by the use of technologies. However, people often associate with the term ‘technology’ attributes, such as catastrophic and potentially dangerous, and tend to take the benefits of technological products for granted. This asymmetry in risk–benefit perception is one of the main reasons why many consumers are concerned about ‘hidden’ risks of technologies and why they demand stringent regulatory actions when they feel unduly exposed to potential emissions or waste products associated with the lifecycle of technologies. This situation is often aggravated by social amplification processes, by which even small risks receive high media attention and are blown out of proportion in the public arena. At the same time, however, one needs to acknowledge that many technologies have the potential to harm the human health and the environment. The purpose of this article is to review our knowledge about risk perception with respect to technologies, in particular emerging technologies, and to suggest possible strategies to use this knowledge for improving our risk management practice. Technological risk perception is defined in this article as the processing of physical signals and/or information about a potentially harmful impact of using technology and the formation of a judgment about seriousness, likelihood, and acceptability of the respective technology. Based on the review of psychological, social, and cultural factors that shape individual and social risk perceptions, we have attempted to develop a structured framework that provides an integrative and systematic perspective on technological risk perception and that may assist risk management and regulation in taking perceptions into account.     

Security or opportunity: the influence of risk‐taking tendency on risk information preference

It has been suggested that risk avoiders and risk takers differ in the extent to which they focus on the worst and best outcomes of a risky activity. By implication risk avoiders and risk takers should also differ in their risk information preferences. Specifically, as risk avoiders focus more on the worst outcomes, it was hypothesized that they would prefer negative information about the risk. In contrast, as risk takers focus more on the best outcomes, it was hypothesized that they would prefer positive information about the risk. In an information selection task, subjects could select newspaper headlines that indicated negative and positive information about a variety of risks. Contrary to the hypothesis, risk avoiders selected more positive information than risk takers. The results are discussed in relation to the influence of personality on risk taking. One tentative explanation is that differences in anxiety between risk avoiders and risk takers account for these results in that risk avoiders try to find reassurance by seeking positive information. Another is that the participants were seeking reassurance in a relatively involuntary confrontation with risks.     

Beyond under the dome: an environmental documentary amplified public risk perception about air pollution in China

Abstract

Air pollution is a major environmental problem in China and it poses serious risks to public health. Based on the social amplification of risk framework (SARF), this study examines how media, in particular, an impactful environmental documentary titled Under the Dome, influenced Chinese citizens’ risk perception about air pollution. Survey results showed that exposure to the documentary amplified risk perception and risk perception was significantly related to viewers’ information seeking behaviors, policy support, and individual mitigation action about this issue.     

Improving lay understanding of exposure to electromagnetic fields; the effect of information on perception of and responses to risk

Studies show that, although many people are concerned about the potential health risks of being exposed to electromagnetic fields (EMF), lay understanding of exposure, an important determinant of risk perceptions and responses, is limited. In an online consumer panel (n = 245), we tested the effects of providing people with information about EMF on lay understanding of exposure, and on perceptions and responses to risks, using an experimental 2?×?2?×?2 design. Providing people with specific information explaining the distance–exposure relationship, clarifying EMF policy, or specifying personal exposure management options actions resulted in a better understanding of exposure. We demonstrated that information provision as such had no effects on concerns about EMF nor on perceived risk of personal sources, i.e. mobile phones, but lowered perception of risk of public sources, i.e. mobile phone base stations and high-voltage power lines. In addition, information explaining the distance–exposure relationship in combination with policy information resulted in reduced self-reported risk-aversive responses. Moreover, participants who understood more about exposure in relation to the distance to the source showed lower perceptions of risk, were less likely to restrict their own exposure, and more likely to accept new installations of public sources of EMF in their neighborhood. In contrast, awareness that exposure was mainly determined by personal use of EMF sources corresponded with higher perceptions of risk from personal sources and a higher likelihood to restrict one’s own exposure. Our findings provide focal points for improving communication on EMF. In particular, we suggest to include information clarifying the distance–exposure relationship to improve understanding of exposure.     

Fairness,risk and risk tolerance in the siting of a nuclear waste repository

In this paper, risk tolerance with regard to nuclear waste is investigated. It is shown that Swedish respondents did not readily accept a local high-level nuclear waste repository, contrary to claims based on polling data. The important role played in Sweden by misleading survey questions is pointed out and demonstrated on empirical data where formulations and procedures are varied. The acceptance of a local repository (measured as intention to vote in its favour in a local referendum) could not be explained well by a cost-benefit approach, neither by an individual risk perception model. Concern about the local community was an important determinant, however, and so were moral aspects. When these aspects were included in a model, about 60% of the variance of risk perception and risk acceptance was accounted for. Cultural Theory scale items, however, added virtually nothing to the explanatory power of the models. In further analyses, NIMBY respondents were identified, defined here as people who rejected a local repository in spite of having acknowledged substantial utility of nuclear power. NlMBYs constituted, however, only a small minority of all opposition to a local repository. Few respondents stated that they would accept a local repository if they were to be given financial compensation. This fact may be related to nuclear power issues being conceived as general, rather than personal, matters. Those who saw it as a politically important issue also conceived of it in general rather than personal terms.     

Die Arglistanfechtung des Versicherungsvertrags bei fehlender textförmiger Nachfrage nach Gefahrumständen

The article treats the issue of disputing an insurance contract for reasons of malice in the event of an insurance company failing to comply with the requirements pertaining to the risk-issue-conversation provided by the VVG. According to §19 Abs. 1 VVG, the policy holder is merely required to answer questions about risk issues that are presented to him in writing and timewise before the policy holder has submitted his offer respectively in the time frame between submission of the offer by the policy holder and the acceptance by the insurance company. It is contentious whether an insurance company that has violated §19 Abs. 1 VVG may nevertheless dispute the insurance contract for reasons of malice in case of misrepresentation or omission of information on part of the policy holder. The article argues for an application of §241 Abs. 2 BGB in conjunction with §123 Abs. 1 BGB in addition to §19 Abs. 1 VVG—and thus in favor of an insurance company’s possibility to dispute the insurance contract. The protection of the policy holder’s rights is not an issue in the problem of applying the correct provision. They must rather be considered when determining the requirements of the contract dispute.     

Implicit attitudes toward risk: the construction and validation of the measurement method

Methods that are typically used to examine individual differences in risk attitudes (e.g. lotteries, dilemmas, questionnaires) require participants to explicitly declare their willingness to take risk. Therefore, they may be biased by the need for self-presentation or situational characteristics such as time pressure and cognitive constraints that lead to more spontaneous and automatic processing of risk-related information. The aim of this study was to construct an indirect measure of risk attitudes that is free of these methodological limitations. The method based on the Implicit Association Test shows high internal reliability and satisfactory stability over time. It correlates moderately with different explicit measures of risk attitudes that are related to sensation seeking. Finally, it is characterized by a high predictive power. Adding the implicit measure to the set of independent variables representing declarative evaluations of risk attitudes significantly improved the model predicting risky real-life behavior. We argue that the indirect assessment of risk attitudes presented in this paper may be used as an universal measure of people’s risk propensity that is free of biases related to self-presentation and situational factors.     

People’s responses to risks of electromagnetic fields and trust in government policy: the role of perceived risk,benefits and control

Trust in government policy affects the way people perceive and handle risks. In our study, we investigated the relationships between trust in government policy regarding electromagnetic fields (EMF), perceived risk and perceived benefits of public and personal EMF sources, perceived control over exposure to EMF and responses to the possible EMF health risk (e.g. protest against placement of mobile phone base stations or power lines, or taking own measures against EMF exposure). Previous research indicated that perceived risk and benefits mediate the relationship between trust and people’s risk responses. Additionally, we suggest that perceived control over EMF exposure affects the relation between trust in government policy and perceived risk, and, consequently, the risk responses. We performed a survey among the Dutch population (n?=?1009), which contained questions about risk responses to EMF, perceived risk and benefits of several EMF sources, trust in government policy and perceived control over EMF exposure. Comparing public EMF sources, i.e. power lines and mobile phone base stations, to personal EMF sources, i.e. microwave ovens and cordless and mobile phones, we tested our hypotheses. Variations in risk responses to both public and personal EMF sources were mainly explained by risk perception. In addition, perceived risk partially mediated the relationship between trust in government policy and risk responses. For public sources, perceived control over exposure weakened the negative relationship between trust and perceived risk. We conclude that, especially in people with low perceived control, a lack of trust in government policy may enhance perceptions of health risks, thereby increasing their inclination for risk responses.     

Public perceptions of environmental risk in China

China, as a ‘double risk’ society, is in urgent need for effective environmental risk management systems. Compared with other risks, man-made environmental risks have not been given due weight. Public awareness and perceptions of environmental risks are crucial in all phases of effective risk management. However, little is known about public perceptions of environmental risks in China. To contribute to better understanding of public perception of environmental risk, a questionnaire survey was conducted among university students in Beijing, who represent a group with high level of education and a generally high sensitivity to new information. The results show that even this group has limited knowledge about environmental risks and current risk management systems. Further studies are needed to understand the social construction of environmental risks in China and to seek ways to involve the Chinese public in emergency response and risk management.