Preferences over the Fair Division of Goods: Information, Good, and Sample Effects in a Health Context

Greater recognition by economists of the influential role that concern for distributional equity exerts on decision making in a variety of economic contexts has spurred interest in empirical research on the public judgments of fair distribution. Using a stated-preference experimental design, this paper contributes to the growing literature on fair division by investigating the empirical support for each of five distributional principles — equal division among recipients, Rawlsian maximin, total benefit maximization, equal benefit for recipients, and allocation according to relative need among recipients — in the division of a fixed bundle of a good across settings that differ with respect to the good being allocated (a health care good — pills, and non-health care but still health-affecting good — apples) and the way that alternative possible divisions of the good are described (quantitative information only, verbal information only, and both). It also offers new evidence on sample effects (university sample vs. community samples) and how the aggregate ranking of principles is affected by alternative vote-scoring methods. We find important information effects. When presented with quantitative information only, support for the division to equalize benefit across recipients is consistent with that found in previous research; changing to verbal descriptions causes a notable shift in support among principles, especially between equal division of the goods and total benefit maximization. The judgments made when presented with both quantitative and verbal information match more closely those made with quantitative-only descriptions rather than verbal-only descriptions, suggesting that the quantitative information dominates. The information effects we observe are consistent with a lack of understanding among participants as to the relationship between the principles and the associated quantitative allocations. We also find modest good effects in the expected direction: the fair division of pills is tied more closely to benefit-related criterion than is the fair division of apples (even though both produce health benefits). We find evidence of only small differences between the university and community samples and important sex-information interactions.Distributive Justice; Equity; Resource Allocation; Health Care

Preferences over the Fair Division of Goods: Information, Good, and Sample Effects in a Health Context

Greater recognition by economists of the influential role that concern for distributional equity exerts on decision making in a variety of economic contexts has spurred interest in empirical research on the public judgments of fair distribution. Using a stated-preference experimental design, this paper contributes to the growing literature on fair division by investigating the empirical support for each of five distributional principles — equal division among recipients, Rawlsian maximin, total benefit maximization, equal benefit for recipients, and allocation according to relative need among recipients — in the division of a fixed bundle of a good across settings that differ with respect to the good being allocated (a health care good — pills, and non-health care but still health-affecting good — apples) and the way that alternative possible divisions of the good are described (quantitative information only, verbal information only, and both). It also offers new evidence on sample effects (university sample vs. community samples) and how the aggregate ranking of principles is affected by alternative vote-scoring methods. We find important information effects. When presented with quantitative information only, support for the division to equalize benefit across recipients is consistent with that found in previous research; changing to verbal descriptions causes a notable shift in support among principles, especially between equal division of the goods and total benefit maximization. The judgments made when presented with both quantitative and verbal information match more closely those made with quantitative-only descriptions rather than verbal-only descriptions, suggesting that the quantitative information dominates. The information effects we observe are consistent with a lack of understanding among participants as to the relationship between the principles and the associated quantitative allocations. We also find modest good effects in the expected direction: the fair division of pills is tied more closely to benefit-related criterion than is the fair division of apples (even though both produce health benefits). We find evidence of only small differences between the university and community samples and important sex-information interactions.Distributive justice, equity, resource allocation, health care

When research seems like clinical care: a qualitative study of the communication of individual cancer genetic research results

<p>Abstract</p> <p>Background</p> <p>Research ethicists have recently declared a new ethical imperative: that researchers should communicate the results of research to participants. For some analysts, the obligation is restricted to the communication of the general findings or conclusions of the study. However, other analysts extend the obligation to the disclosure of individual research results, especially where these results are perceived to have clinical relevance. Several scholars have advanced cogent critiques of the putative obligation to disclose individual research results. They question whether ethical goals are served by disclosure or violated by non-disclosure, and whether the communication of research results respects ethically salient differences between research practices and clinical care. Empirical data on these questions are limited. Available evidence suggests, on the one hand, growing support for disclosure, and on the other, the potential for significant harm.</p> <p>Methods</p> <p>This paper explores the implications of the disclosure of individual research results for the relationship between research and clinical care through analysis of research-based cancer genetic testing in Ontario, Canada in the late 1990s. We analyze a set of 30 interviews with key informants involved with research-based cancer genetic testing before the publicly funded clinical service became available in 2000.</p> <p>Results</p> <p>We advance three insights: First, the communication of individual research results makes research practices <it>seem </it>like clinical services for our respondents. Second, while valuing the way in which research enables a form of clinical access, our respondents experience these quasi-clinical services as inadequate. Finally, our respondents recognize the ways in which their experience with these quasi-clinical services is influenced by research imperatives, but understand and interpret the significance and appropriateness of these influences in different ways.</p> <p>Conclusion</p> <p>Our findings suggest that the hybrid state created through the disclosure of research results about individuals that are perceived to be clinically relevant may produce neither sufficiently adequate clinical care nor sufficiently ethical research practices. These findings raise questions about the extent to which research can, and <it>should</it>, be made to serve clinical purposes, and suggest the need for further deliberation regarding any ethical obligation to communicate individual research results.</p

Theory Based Medicine and the Role of Evidence: Why the Emperor Needs New Clothes, Again

The evidence based medicine movement ("EBM") was established to combat capricious reasoning in clinical care, particularly arguments from authority. Critique of authority and appraisal of evidence remain EBM's core values, and should be revisited in this current era of EBM's maturity and considerable influence. At this stage, we encounter a new form of under-questioned authority: evidence from well-designed and methodically appraised RCTs. RCT evidence is now prized even on some occasions when it is incapable of providing meaningful information - in particular, when underlying casual theory is inscrutable. This is the case with many health interventions whose mechanisms remain "black boxes" without compelling explanations. A review of recent clinical trials of remote intercessory prayer illustrates this problem. The findings of these trials are uninterpretable and inapplicable, due to unresolved and fundamental theoretical problems with their hypotheses and premises. Yet this trial evidence has gained remarkable scientific credibility and high profile dissemination, largely on the warrant of rigorous RCT methodology. The case of remote intercessory prayer evidence helps to identify some systematic blind spots in the institutions of EBM. As EBM has long counselled, clinicians and policy makers should indeed be sceptical of casual arguments in the absence of empirical evidence. However, empirical evidence in the absence of good casual argument is likewise occasion for scepticism. Medicine - even evidence-based medicine - is theory-based at its core. EBM must cultivate greater capacity to address the crucial role of theory, in both the generation and the use of experimental evidence.

A change of heart and a change of mind? Technology and the redefinition of death in 1968

In 1968, an ad hoc committee of Harvard faculty publicly redefined death as "brain death". What interests and issues compelled the redefinition of death, and formed the "spirit" of this precedent-setting policy? This paper reports on an historical study of the files of the Harvard ad hoc committee, the proceedings of an international conference on ethical issues in organ transplantation, and a review of the medical literature and media in the decades preceding the redefinition of death. This analysis of the technological and professional forces involved in the redefinition of death in 1968 questions two common theses: that technological "progress", primarily in the areas of life support and electroencephalography, literally created brain-dead bodies and dictated their defining features (respectively), and that Harvard's definition of brain death by committee constituted a net loss of autonomy for medicine. In fact, medical researchers through the 1960s disputed and negotiated many features of the brain death syndrome, and transplantation interests--perhaps more kidney than heart--played a particularly influential role in tailoring the final criteria put forth by Harvard in 1968. It is also doubtful whether Harvard's definition of brain death by multidisciplinary committee undermined medical privilege and autonomy. The Harvard Ad Hoc Committee may not have succeeded in establishing definitive, indisputable brain death criteria and ensuring their consistent application to all clinical cases of brain death. However, it did gain significant ground for transplant and other medical interests by (1) establishing brain death as a technical "fact" and the definition of brain death as an exercise for medical theorists, (2) involving non-medical ethics and humanities experts in supporting the technical redefinition of death, and, (3) successfully involving transplant surgeons in the redefinition of death and attempting (albeit unsuccessfully) not to exclude them from the actual diagnosis of death in individual cases.brain death ethics transplantation medical technology

Health system guidance appraisal-concept evaluation and usability testing

Health system guidance (HSG) provides recommendations aimed to address health system challenges. However, there is a paucity of methods to direct, appraise, and report HSG. Earlier research identified 30 candidate criteria (concepts) that can be used to evaluate the quality of HSG and guide development and reporting requirements. The objective of this paper was to describe two studies aimed at evaluating the importance of these 30 criteria, design a draft HSG appraisal tool, and test its usability.; This study involved a two-step survey process. In step 1, respondents rated the 30 concepts for appropriateness to, relevance to, and priority for health system decisions and HSG. This led to a draft tool. In step 2, respondents reviewed HSG documents, appraised them using the tool, and answered a series of questions. Descriptive analyses were computed.; Fifty participants were invited in step 1, and we had a response rate of 82 %. The mean response rates for each concept within each survey question were universally favorable. There was also an overall agreement about the need for a high-quality tool to systematically direct the development, appraisal, and reporting of HSG. Qualitative feedback and a consensus process by the team led to refinements to some of the concepts and the creation of a beta (draft) version of the HSG tool. In step 2, 35 participants were invited and we had a response rate of 74 %. Exploratory analyses showed that the quality of the HSGs reviewed varied as a function of the HSG item and the specific document assessed. A favorable consensus was reached with participants agreeing that the HSG items were easy to understand and easy to apply. Moreover, the overall agreement was high for the usability of the tool to systematically direct the development (85 %), appraisal (92 %), and reporting (81 %) of HSG. From this process, version 1.0 of the HSG appraisal tool was generated complete with 32 items (and their descriptions) and 4 domains.; The final tool, named the Appraisal of Guidelines for Research and Evaluation for Health Systems (AGREE-HS) (version 1), defines expectations of HSG and facilitates informed decisions among policymakers on health system delivery, financial, and governance arrangements