Background: Discussing treatment risks has become increasingly important in medical communication. Still, despite regulations, physicians must decide how much and what kind of information to present. Objective: To investigate patients’ preference for information about a small risk of a complication of colonoscopy, and whether medical and personal factors contribute to such preference. To propose a disclosure policy related to our results. Design: Vignettes study. Setting: Department of Gastroenterology, Academic Medical Centre, the Netherlands. Patients: 810 consecutive colonoscopy patients. Intervention: A home-sent (...) questionnaire containing three vignettes. Vignettes varied in the indication for colonoscopy, complication severity and level of risk. Patients were invited to indicate their wish to be informed and the importance of such information. In addition, sociodemograhic, illness-related and psychological characteristics were assessed. Main outcome measurements: Wish to be informed and importance of information. Results: Of 810 questionnaires, 68% were returned. Patients generally wished to be informed about low-risk complications, regardless of the indication for colonoscopy or the severity of the complication. The level of risk did matter, though (OR = 2.48, SE = 0.28, p = 0.001). The information was considered less important if done for population screening purposes or diagnosis of colon cancer, if the complication was less severe (bleeding) and if the risk was smaller (0.01% and 0.1%). Patients’ information preference was also related to age, mood and coping style. Limitations: Difficulty of vignettes. Conclusions: Patients generally wish to be informed about all possible risks. However, this might become uninformative. A stepwise approach is suggested. (shrink)

The aim of this research was to gain insight into the experiences and perspectives of individual members of a Medical Research Ethics Committee regarding their individual roles and possible tensions within and between these roles. We conducted a qualitative interview study among members of a large MREC, supplemented by a focus group meeting. Respondents distinguish five roles: protector, facilitator, educator, advisor and assessor. Central to the role of protector is securing valid informed consent and a proper risk-benefit analysis. The role (...) of facilitator implies that respondents want to think along with and assist researchers in order to help medical science progress. As educators, the respondents want to raise ethical and methodological awareness of researchers. The role of advisor implies that respondents bring in their own expertise. The role of assessor points to contributing to the overall evaluation of the research proposal. Various tensions were identified within and between roles. Within the role of protector, a tension is experienced between paternalism and autonomy. Between the role of protector and facilitator tensions occur when the value of a study is questioned while risks and burdens for the subjects are negligible. Within the role of assessor, a tension is felt between the implicit nature of judgments and the need for more explicit formulations. Awareness of various roles and responsibilities may prevent one-sided views on MREC work, not only by members themselves, but also by researchers. Tensions within and between the roles require reflection by MREC members. (shrink)

The aim of this research was to gain insight into the experiences and perspectives of individual members of a Medical Research Ethics Committee regarding their individual roles and possible tensions within and between these roles. We conducted a qualitative interview study among members of a large MREC, supplemented by a focus group meeting. Respondents distinguish five roles: protector, facilitator, educator, advisor and assessor. Central to the role of protector is securing valid informed consent and a proper risk-benefit analysis. The role (...) of facilitator implies that respondents want to think along with and assist researchers in order to help medical science progress. As educators, the respondents want to raise ethical and methodological awareness of researchers. The role of advisor implies that respondents bring in their own expertise. The role of assessor points to contributing to the overall evaluation of the research proposal. Various tensions were identified within and between roles. Within the role of protector, a tension is experienced between paternalism and autonomy. Between the role of protector and facilitator tensions occur when the value of a study is questioned while risks and burdens for the subjects are negligible. Within the role of assessor, a tension is felt between the implicit nature of judgments and the need for more explicit formulations. Awareness of various roles and responsibilities may prevent one-sided views on MREC work, not only by members themselves, but also by researchers. Tensions within and between the roles require reflection by MREC members. (shrink)

Broad genome-wide testing is increasingly finding its way to the public through the online direct-to-consumer marketing of so-called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision-making with regard to the testing offer, we argue that current (...) practices of information provision are insufficient and that there is a place – and a need – for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings. (shrink)

Broad genome‐wide testing is increasingly finding its way to the public through the online direct‐to‐consumer marketing of so‐called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision‐making with regard to the testing offer, we argue that current (...) practices of information provision are insufficient and that there is a place – and a need – for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings. (shrink)

BackgroundIn the Canadian Alliance for Healthy Hearts and Minds (CAHHM) cohort, participants underwent magnetic resonance imaging (MRI) of the brain, heart, and abdomen, that generated incidental findings (IFs). The approach to managing these unexpected results remain a complex issue. Our objectives were to describe the CAHHM policy for the management of IFs, to understand the impact of disclosing IFs to healthy research participants, and to reflect on the ethical obligations of researchers in future MRI studies.MethodsBetween 2013 and 2019, 8252 participants (...) (mean age 58 ± 9 years, 54% women) were recruited with a follow-up questionnaire administered to 909 participants (40% response rate) at 1-year. The CAHHM policy followed a restricted approach, whereby routine feedback on IFs was not provided. Only IFs of severe structural abnormalities were reported.ResultsSevere structural abnormalities occurred in 8.3% (95% confidence interval 7.7–8.9%) of participants, with the highest proportions found in the brain (4.2%) and abdomen (3.1%). The majority of participants (97%) informed of an IF reported no change in quality of life, with 3% of participants reporting that the knowledge of an IF negatively impacted their quality of life. Furthermore, 50% reported increased stress in learning about an IF, and in 95%, the discovery of an IF did not adversely impact his/her life insurance policy. Most participants (90%) would enrol in the study again and perceived the MRI scan to be beneficial, regardless of whether they were informed of IFs. While the implications of a restricted approach to IF management was perceived to be mostly positive, a degree of diagnostic misconception was present amongst participants, indicating the importance of a more thorough consent process to support participant autonomy.ConclusionThe management of IFs from research MRI scans remain a challenging issue, as participants may experience stress and a reduced quality of life when IFs are disclosed. The restricted approach to IF management in CAHHM demonstrated a fair fulfillment of the overarching ethical principles of respect for autonomy, concern for wellbeing, and justice. The approach outlined in the CAHHM policy may serve as a framework for future research studies.Clinical trial registrationhttps://clinicaltrials.gov/ct2/show/nct02220582. (shrink)

The purpose of this article is to illustrate moral learning in persons with a psychiatric disability who participated in a nursing intervention, called the photo-instrument. This intervention is a form of hermeneutic photography. The findings are based on a multiple case study of 42 patients and additional interviews with eight of them. Photo groups were organized within three settings of psychiatric services: ambulatory as well as clinical, all situated in the Netherlands. Data were analysed according to hermeneutic and semiotic principles. (...) Two cases are presented. Findings show that voice and face are concepts that help to identify elements of moral learning in the rehabilitation process of persons with a psychiatric disability. During the process patients become more aware of their responsibilities towards themselves and others. (shrink)

A quantum theory of the photon is developed in a natural manner. Newton-Wigner and Wightman demonstrated that the photon could not be strictly localized according to natural criteria. These investigations involved the identification of an elementary system with a uirrep of the Poincare group. We identify a particle with the localized measurement of the states satisfying the uirrep. In the case of zero mass and unit spin, the photon is identified with those components of the state that can be localized. (...) A c-number four-vector potential and Lorentz condition are derived from the relativistic wave equation. The Wightman localization is demonstrated for the three independent space components of the vector potential, and the photon is identified with these components. A position operator and probability density follow immediately from the localization. A consequence of the subjective definition of a photon is that the transformations of the vector potential are unitary, and hence the unitary scalar product can be obtained for the four-vector potential. A Hilbert space is defined for the three space components of the vector potential. A position operator and probability density are derived from the scalar product, which compare directly with those obtained from the localization and the non-relativistic theory. As the longitudinal and scalar polarizations do not contribute to the measured transition probability, they are considered virtual. Lastly, a conserved four-vector current is derived from the scalar product. The possibility of observing a strict localization of the photon in the laboratory is suggested. (shrink)

The problem of simultaneous measurement of incompatible observables in quantum mechanics is studied on the one hand from the viewpoint of an axiomatic treatment of quantum mechanics and on the other hand starting from a theory of measurement. It is argued that it is precisely such a theory of measurement that should provide a meaning to the axiomatically introduced concepts, especially to the concept of observable. Defining an observable as a class of measurement procedures yielding a certain prescribed result for (...) the probability distribution of the set of values of some quantity (to be described by the set of eigenvalues of some Hermitian operator), this notion is extended to joint probability distributions of incompatible observables. It is shown that such an extension is possible on the basis of a theory of measurement, under the proviso that in simultaneously measuring such observables there is a disturbance of the measurement results of the one observable, caused by the presence of the measuring instrument of the other observable. This has as a consequence that the joint probability distribution cannot obey the marginal distribution laws usually imposed. This result is of great importance in exposing quantum mechanics as an axiomatized theory, since overlooking it seems to prohibit an axiomatic description of simultaneous measurement of incompatible observables by quantum mechanics. (shrink)

The focus of this study was to analyze the content, distribution, and comparative genome relationships of 996 chromosome bin-mapped expressed sequence tags accounting for 2266 restriction fragments on the homoeologous group 3 chromosomes of hexaploid wheat. Of these loci, 634, 884, and 748 were mapped on chromosomes 3A, 3B, and 3D, respectively. The individual chromosome bin maps revealed bins with a high density of mapped ESTs in the distal region and bins of low density in the proximal region of the (...) chromosome arms, with the exception of 3DS and 3DL. These distributions were more localized on the higher-resolution group 3 consensus map with intermediate regions of high-mapped-EST density on both chromosome arms. Gene ontology classification of mapped ESTs was not significantly different for homoeologous group 3 chromosomes compared to the other groups. A combined analysis of the individual bin maps using 537 of the mapped ESTs revealed rearrangements between the group 3 chromosomes. Approximately 232 of the consensus mapped ESTs matched sequences on rice chromosome 1 and revealed large- and small-scale differences in gene order. Of the group 3 mapped EST unigenes ∼21 and 32% matched the Arabidopsis coding regions and proteins, respectively, but no chromosome-level gene order conservation was detected. (shrink)

This selection of the gross features of oriental philosophy yields only a sketchy introduction to the subject. Greek philosophy, particularly Plato and Aristotle, receives a fuller treatment, but it, too, is oversimplified.--J. E. M.

Some 600 entries are included in the 75-page section on philosophy. Behavioral sciences and other related sources occupy the rest of the volume. The period treated is from 1920-1958. Most entries include short, summarial statements.--J. E. M.

The 2010 Nagoya Protocol is an international framework for access and benefit sharing (ABS) of the use of genetic and biological resources, with particular focus on indigenous communities. This is especially important in Africa, where local communities have a close reliance on environmental resources and ecosystems. However, national legislation and policies commonly lag behind international agreements, and this poses challenges for legal compliance as well as practical applications. This study reviews the academic literature on the Nagoya Protocol and ABS applications, (...) and then considers the implications of this analysis for research in Africa. Results show that there is uneven engagement with the principles of the Nagoya Protocol across different academic disciplines; local communities are sometimes sidelined in these studies; and only 8% of researchers in the literature analysed are located in Africa. Future developments should focus on ensuring national compliance with the Nagoya Protocol, and that researchers and industry work in partnership with local African communities on ABS issues. (shrink)

Intended as a course for beginning students in philosophy, this anthology consists of three "Books": "The Search for Understanding," "Ethics," and "Practical Philosophy." The latter is a hodgepodge--largely of moral advice--with selections from Buddha and Christ, among others. Although the selections are representative of diverse positions, both old and new, they are too short to be informative, and some of them might easily be misleading.--J. E. M.

The author hurries through the classical mathematicians in short order, highlighting their most significant contributions and their indebtedness to other thinkers. Written in a restrained narrative, this book presupposes throughout a detailed knowledge of mathematical concepts and symbolism. Some curious biographical data are included.--J. E. M.

Malcolm spends a good part of this short essay discussing what it could possibly mean if someone were to say, "I know that I am asleep." He concludes that such an utterance is not meaningful, that no assertions or judgments can be made in dreams, but that reports of dreams may be accepted without attempted verification. Aristotle's and Descartes views on dreaming are briefly examined.-J. E. M.

An extremely lucid, important work. The author surveys major ethical theories, giving a hearing not so much to proponents of theories as to the theories themselves: their assumptions and implications. His criticisms are acute and convincing. In the end he presents his "Social Adjustment Theory"--an empirical ethics which explains values as indigenous to the selective systems of human organisms.--J. E. M.

The naturalistic fallacy, properly understood, and the nature of ethical disagreement render classical ethical naturalism untenable. Emotive naturalism, furthermore, overlooks the "semantic dimension" of moral judgments, while logical naturalism fails "genuinely" to produce suppressed imperative premises or to explain away the apparently cognitive nature of the desires and attitudes which present imperatives. Hence, the author has been led by his critical study of naturalism to affirm nonnaturalism in ethics. An interesting final chapter in this resourceful work considers the metaphysical implications (...) of naturalism vis-a-vis nonnaturalism.--J. E. M. (shrink)

The author is concerned to show that Freud and Dewey were in agreement with regard to their basic psychological positions, and that because of their personal experiences they were led "to emphasize the opposite element in a relatively fixed equation ['the dynamic interaction between the individual and his environment']" with Freud placing more weight upon internal organization of the individual and Dewey on external events. In establishing similarities the author seems to have overlooked the fact that one difference, if important (...) enough, can minimize similarities. The "inner," "outer" difference seems to be a case in point. Hence, Dewey is generally associated with a social psychology and Freud with an individual psychology. --J. E. M. (shrink)

Addressed to the non-mathematician, this mainly historical work attempts to bring out the basic philosophical issues in the face of which mathematics exhibits that it has "'no corner on the market' of truth." The author's discussion of theory of numbers is quite good; the chapter on the infinite, however, with its concern for the infinity of God, is perhaps less mathematical or strictly philosophical than one has a right to expect.--J. E. M.

Subtitled An Introductory Text in Metaphysics this work provides a basic indoctrination in Thomism, giving credit to the theses borrowed from Aristotle. Non-Thomistic answers to the mysteries of being are, for the most part, dismissed as irrelevant.--J. E. M.

This book deals with many interesting topics in a provocative way. Of considerable interest in Kaufmann's vicious counterattack on Popper's treatment of Hegel. Unfortunately there is no over-all unifying theme. The author is obviously erudite and misses no opportunity for pointing this out.--J. E. M.