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.     

Relative Hedging of Systematic Mortality Risk

A number of problematic issues have arisen in anticipation of the potential role of molecular tests for genetic predispositions to illness in risk assessment by insurance underwriters. We argue in this paper that the regrettable history and current risks of genetic discrimination warrant a presumption that genetic predisposition status should not be used in any nonmedical contexts, unless compelling evidence can demonstrate that serious harm will result to third-party interests without such use. We argue that insurers should not be able to initiate testing for genetic predisposition. We also argue that there are many reasons to doubt whether patients’ test results will result in such serious adverse selection as to cause substantial harm to insurance markets, except possibly at higher policy amounts in life or disability income insurance. We conclude that the burden of proof must be on insurers to demonstrate necessity of use in specific cases in which test availability shows high probability of imminent, serious harm to insurance markets.     

Genetic risk assessment from an ethical point of view

This contribution provides analyses of four ethically problematic issues in genetic risk assessment and management. First, should we require a positive risk-benefit balance for each concerned individual, or is it sufficient that the total sum of benefits outweighs the total sum of risks? Secondly, should sensitive groups have special protection, and in that case with what types of measures? Thirdly, what types of measures should be taken to protect against the risks associated with teratogenic, embryotoxic and foetotoxic agents? Fourthly, how should we deal with the new issues relating to equity and to group-based risk assessment that genomic medicine gives rise to?     

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.     

PLANET: An Expert System for Audit Risk Assessment and Planning

PLANET is an expert system for audit risk assessment and audit test selection. At present it is undergoing worldwide field testing by Price Waterhouse audit teams. As a case study, PLANET illustrates a complex interplay of audit methodology issues and expert systems development techniques, and reinforces the validity of many of the widely reported lessons learned about successful expert systems development during the 1980s. However, the experience also challenges elements of this received wisdom while exposing special issues arising in the development of expert systems in the field of auditing.     

An integrated system for information security management with the unified framework

Information security management plays an essential role for drawing the roadmap of information security; thus, many theoretical methodologies and practical standards are brought into this domain. However, many standards and methodologies are too cumbersome to be adopted by an organization. Additionally, there is no unified framework to systematically handle the tedious tasks of information security management. This study’s primary goal is to design an integrated system for information security management (ISISM) that aims to use current methodologies and standards to solve the above-mentioned issues. Because business impact analysis and risk analysis are the most important areas within this domain, we carefully select the related methods and then integrate them into a unified framework, upon which the proposed ISISM depends. To achieve this outcome for this study, security requirement engineering is adopted, which enables the designed system to support system users in generating risk assessment reports with related information security policies.     

The world ex ante risk premium: an empirical investigation

A number of recent papers have focused on testing the linearity restrictions implied by international asset pricing models. The tests, however, have not addressed an additional restriction implied by the models; namely, that the risk premium on the world portfolio is positive. This study provides a direct assessment of this restriction. The evidence indicates that the ex ante world market risk premium can be negative. The results are robust to market proxies that are hedged and unhedged with respect to currency risk. Subperiod analysis indicates that the rejection of the positive risk premium restriction is driven by the first half of the sample period.     

Quality in risk reporting on energy issues in German news media

In media coverage, the context of the German energy transition, also referred to as Energiewende, casts a spotlight not only on various technology options (e.g. wind or coal power) but also on more abstract topics such as security of supply or electricity prices. Thereby, the public’s assessment of energy-related issues may greatly rely on perceived risks. Focusing on the quality of energy-related risk reporting, this contribution therefore is intended to explore the German print and TV media discourse on energy options or topics. In our sample, one in three articles connects an energy option or topic with an evident or potential unwanted event. Although the media’s effect on actual risk perception involves some controversies, researchers tend to criticize the media as being susceptible to framing and for failing to place unwanted events in perspective, e.g. by not presenting the corresponding likelihood of occurrence, which is necessary to define risk. If this critique holds true, accurate public risk assessment is partly hampered because media coverage implies uncertainty rather than providing all information available. We examined seven indicators of quality reporting derived from literature research: intensity, likelihood, controllability, desired uncertainty, sensationalism, emotional language, and type of unwanted event. Based on German energy media coverage in 2013, we found a relatively high occurrence of intensity and controllability, whereas likelihood and desired uncertainty were reported less often. By aggregating the indicators into a risk-reporting quality index, we did not observe a poor quality of risk reporting on energy issues. In contrast to previous research, the overall quality of energy-related risk reporting can be assessed as at least moderate, implying that the media depicts risks more precisely than assumed. The occurrence of quality indicators thereby significantly depends on the type of unwanted event rather than on the energy option considered.     

Towards a concept of genetic risk tolerance: a risk analysis perspective

The starting point of the MindTheRisk project has been to raise socio-political questions about whether lay public’s understanding is satisfied about the genetic information they receive, and to what extent regulators do take this aspect on board when they decide to allow or restrict genetic testing or to develop communications about genetic testing. This article draws on the concepts that have emerged among the risk research community to tackle “risk tolerance’’. It explores the application of those concepts to the sharing and regulating of genetic risk information. We start with a conceptualisation of risk acceptability/tolerability in the genetic context, before turning to concrete hurdles that need to be overcome and questions that need to be answered. Finally, we suggest some direction for policy. The paper is based on an in-depth review supplemented by pilot interviews conducted with the European Medicines Agency, National regulatory agencies, academic and members of a patient organisation, all directly involved in policy.     

Value for Money and Risk Relationships in Public–Private Partnerships: Evaluating Program‐based Evidence

Value for money – VfM (the provision of improved public infrastructure and services at lower cost) – is a central rationale for the deployment of public–private partnerships (P3s). However, it remains unclear how VfM is actually created in P3s. There are several issues that surround the ex ante evaluation conducted during P3 assessment, including: transparency of the process, engagement of stakeholders, potential restrictions on current and future public sector flexibility, and political influences that call into question the legitimacy of the process. This study examines these issues using Alberta's P3 projects executed since 2003, and interviews 35 key participants and stakeholders. The findings suggest that while the transfer of risk from the public to the private sector is a key driver of VfM, it may overstate the extent to which planning related risks can be transferred. This paper recommends enhanced VfM component disclosures and transparency as the evaluation process evolves. Furthermore, a more rigorous approach to risk conceptualisation and valuation should be adopted. Risk allocation should be about managing not only occurrence, but also impact of the risk factor. Finally, political interference must be moderated to allow for the optimal realisation of the best possible choices presented by P3 deployments.     

Total efficient risk priority number (TERPN): a new method for risk assessment

Safety is one of the most important issues in modern industrial plants and industrial activities. The Safety Engineering role is to ensure acceptable safety levels of production systems, not only to respect local laws and regulations, but also to improve production efficiency and to reduce manufacturing costs. For these reasons, the choice of a proper model for risk assessment is crucial. In this context, the present research aims to propose a new method, called Total Efficient Risk Priority Number (TERPN), able to classify risks and identify corrective actions in order to obtain the highest risk reduction with the lowest cost. The main scope is to suggest a simple, but suitable model for ranking risks in a company, to reach the maximum effectiveness of prevention and protection strategies. The TERPN method is an integration of the popular Failure Mode Effect and Criticality Analysis (FMECA) with other important factors in risk assessment.     

Determining overall risk

The risk journal literature lacks a clear and simple account of the conceptual issues involved in determining the overall risk of an action, and in explaining how risk is additive. This article attempts to bring a measure of clarity to these issues in as basic and non‐technical a way as possible. First of all, the view that risk is ‘expected harm’ is explained. The view that risk is a quantitative concept is then defended. The distinction between the risk run by doing action A in respect of possible outcome x, and the overall risk run by doing action A in general is explained, as is the position that the overall risk of A is determined by summing the risks of each possible harm that A could give rise to. The article then explains how risks can be summed over time, as long as the probabilities involved are determined according to probability theory. Finally, the article explains that in a doing a risk‐benefit analysis of A, positive aspects of a possible outcome x, where x is harmful on balance, must be incorporated into x's level of harm rather than incorporated into the benefit side of the risk‐benefit analysis of A.     

Features selection,data mining and finacial risk classification: a comparative study

The aim of this paper is to compare several predictive models that combine features selection techniques with data mining classifiers in the context of credit risk assessment in terms of accuracy, sensitivity and specificity statistics. The t‐statistic, Battacharrayia statistic, the area between the receiver operating characteristic, Wilcoxon statistic, relative entropy, and genetic algorithms were used for the features selection task. The selected features are used to train the support vector machine (SVM) classifier, backpropagation neural network, radial basis function neural network, linear discriminant analysis and naive Bayes classifier. Results from three datasets using a 10‐fold cross‐validation technique showed that the SVM provides the best accuracy under all features selections techniques adopted in the study for all three datasets. Therefore, the SVM is an attractive classifier to be used in real applications for bankruptcy prediction in corporate finance and financial risk management in financial institutions. In addition, we found that our best results are superior to earlier studies on the same datasets.     

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.     

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.     

Gene-environment interactions and the complexity of human genetic diseases

In the assessment of mortality and morbidity risk, the ability of family history and genetic test results to predict the age of occurrence, severity, and long-term prognosis of 'genetic' diseases is important. An increasing number of gene-gene and gene-environment interactions have been demonstrated in a number of monogenic Mendelian diseases. These interactions can significantly modify the clinical presentation (disease phenotype) of diseases previously regarded purely as 'genetic.' As a result, 'genetic' diseases can be positioned in a continuum between classic Mendelian and complex disease where the extremes, pure genetic or solely non-genetic, do not exist. The position of any given disease in this continuum is defined by three components: the major gene(s) contributing to the phenotype, the variability added by modifier genes and the significance of environmental factors influencing the phenotype. As the predictive value of genetic test results can be significantly influenced by additional genetic and environmental risk factors, a better understanding of these factors may influence the quantification of mortality and morbidity risk.     

Redefining the issues of risk and public acceptance: The social viability of technology

A conceptual framework is proposed within which the notion of risk as normally used in risk assessment (RA) could be enlarged in line with the real substance of social issues of technology policy, to help avoid RA's threatened irrelevance to social decisionmaking. It is argued that the frequent organizational incoherence and thus the unviability of modern technology arises from ‘social alienation’ between the innovation-commitment phase and the implementation of the technology in society. The roles of technical elites and of particular concepts of technology in this alienation are emphasized.     

Capital and Risk Revisited: A Structural Equation Model Approach for Life Insurers

The role of risk in the capital structure decision of firms is a vast topic in finance. Commonly, models of the interrelationship between risk and capital enumerate as many risk factors as possible by appropriate proxies, with the goal of detailing their individual effects. In this study of the life insurance industry for 1994 through 2000, we take a broader, holistic view of enterprise risk, identifying two groups of insurer risk factors that arise from the major activities of life insurers: investing and underwriting. We call the group of risk factors associated with investing asset risk, and the group associated with underwriting product risk. After specifying other important determinants of capital structure as controls, we allow all other risk factors to find expression in residual error. Within this framework, our focus is to compare two candidate measures for the role of proxy for asset‐related risks. One measure, called regulatory asset risk (RAR), derives from the regulatory tradition of concern with solvency and is related to the C‐1 component of risk‐based capital. The other measure, called opportunity asset risk (OAR), is motivated by traditional finance concerns with market risk and reflects volatility of returns. Product‐related risks are proxied by underwriting exposures in different product lines. We employ structural equation modeling (SEM), which uses longitudinal factor analysis. SEM is an innovative technique for such studies, in dealing effectively with multiple structural equations, autocorrelated panel data, unobserved underlying factors, and other issues that are not simultaneously addressed in other methodologies. We find that RAR and OAR are not equivalent proxies for asset risks. Although overlapping to some extent, each illuminates different aspects of the asset risk–capital interrelationship. In particular, RAR does not seem to affect the capital structure decision of small firms, although OAR does. We interpret this to suggest that small firms as a whole are not as sensitive in their capital decisions to the proxy of regulatory concerns as to the proxy of market opportunity. This contrasts with large insurers, for whom both RAR and OAR have significant effects on capital that comport with the finite risk hypothesis. More detailed analysis suggests that the lack of effect of RAR for small insurers may result from RAR's proxying some factors that induce finite risk for part of the small insurer sample, and other factors that favor the excessive risk hypothesis.     

Risk assessments at the Royal Netherlands Air Force: an explorative study

In this paper, differences in the assessment of mission risks and mission benefits between operators and members of the management level in the transport helicopter branch of the Royal Netherlands Air Force (RNLAF) are studied. Results were obtained from a risk analysis that was conducted in accordance with RNLAF procedures. The analysis suggests that the two organizational levels have a coherent perception on risks despite their hierarchical position. Perceived measures of control – controllability – seem to induce the inclusion or the exclusion of what is appeared to be a risk. The analysis also suggests that risk management tools may obscure these perceptual differences. Risk management tools may therefore not be sufficient to attain safe operations. In discussions and future studies on risk management and on hierarchical differences in risk perception, this is something to take well notice of. Also, managers and others involved in risk management need to recognize the implications of using risk management instruments that are based on simplified models of risk. This research adds to the risk management theory because it connects multi-dimensional risk theory with actual organizational risk management practice.     

Accounting for decisions and decisions for accounting

Behavioral decision theory (BDT) is concerned with “accounting for decisions”. The development of this interdisciplinary field is traced from the appearance of several key publications in the 1950s to the present. Whereas the 1960s saw increasing theoretical and empirical work, the field really started to flourish in the 1970s with the appearance of the review by Slovic & Lichtenstein (Organizational Behavior and Human Performance, pp. 549–744, 1971), and key papers on probabilistic judgment (Tversky & Kahneman, Science, pp. 1124–1131, 1974), and choice (Kahneman & Tversky, Econometrica, pp. 263–291, 1979). From the early 1980s to the present, BDT has seen considerable consolidation and expansion and its influence now permeates many fields of enquiry. After this brief history, eight major ideas or findings are discussed. These are: (1) that judgment can be modeled; (2) bounded rationality; (3) to understand decision making, understanding the task is more important than understanding the people; (4) levels of aspiration/reference points; (5) use of heuristic rules; (6) the importance of adding; (7) search for confirmation; and (8) thought as construction. Next, comments are addressed to differences between BDT and problem solving/cognitive science. It is argued that whereas many substantive differences are artificial, two distinct communities of researchers do exist. This is followed by a discussion of some major shortcomings currently facing BDT that include questions about the robustness of findings as well as overconcern with a few specific, “paradoxial” results. On the other hand, there are many interesting issues that BDT could address and several specific suggestions are made. Moreover, these issues represent opportunities for accounting research and several are enumerated. Finally, BDT presents “decisions for accounting” in the sense that scarce resources need to be allocated to different types of research that could illuminate accounting issues. The argument is made that BDT is one research metaphor or paradigm that has proved useful in accounting and that should be supported. Such support, however, may mean that some researchers may work on issues that, at first blush, might seem distant from accounting per se.