Technology has expanded genomic research and the complexity of extracted gene-related information. Health-related genomic incidental findings pose new dilemmas for nurse researchers regarding the ethical application of disclosure to participants. Consequently, informed consent specific to incidental findings is recommended. Critical Social Theory is used as a guide in recognition of the changing meaning of informed consent and to serve as a framework to inform nursing of the ethical application of disclosure consent in genomic nursing research practices.

Variant Creutzfeldt–Jakob disease is a fatal, transmissible, neurodegenerative disorder for which there is currently no effective treatment. vCJD arose from the zoonotic spread of bovine spongiform encephalopathy. There is now compelling evidence for human to human transmission through blood transfusions from presymptomatic carriers and experts are warning that the real epidemic may be yet to come. Imperatives exist for the development of reliable, non-invasive presymptomatic diagnostic tests. Research into such tests is well advanced. In this article the ethical implications of (...) the availability of these tests are elaborated and comparisons drawn with predictive genetic testing for Huntington’s disease and screening for HIV. Paramount to considerations is the issue of whom to test, weighing up respect for personal autonomy against obligations to benefit and protect society. A paradigm is proposed similar to that used for HIV screening but with unique features: compulsory testing of all blood/organ donors and individuals undergoing surgery or invasive procedures who have a significant risk of disease transmission. (shrink)

This article argues that we could improve the design of research protocols by developing an awareness of and a responsiveness to the social contexts of all the actors in the research enterprise, including subjects, investigators, sponsors, and members of the community in which the research will be conducted. ?Social context? refers to the settings in which the actors are situated, including, but not limited to, their social, economic, political, cultural, and technological features. The utility of thinking about social contexts is (...) introduced and exemplified by the presentation of a hypothetical case in which one central issue is limitation of the probability of injury to subjects by selection of individuals who are not expected to live long enough for the known risks of the study to become manifest as harms. Benefits of such considerations may include enhanced subject satisfaction and cooperation, community acceptance, and improved data quality, among other desirable consequences. (shrink)

An alternative notion of an existential quantifier on four-valued Łukasiewicz algebras is introduced. The class of four-valued Łukasiewicz algebras endowed with this existential quantifier determines a variety which is denoted by \. It is shown that the alternative existential quantifier is interdefinable with the standard existential quantifier on a four-valued Łukasiewicz algebra. Some connections between the new existential quantifier and the existential quantifiers defined on bounded distributive lattices and Boolean algebras are given. Finally, a completeness theorem for the monadic four-valued (...) Łukasiewicz predicate calculus corresponding to the dual of the alternative existential quantifier is proven. (shrink)

Unrecognized presuppositions about patient appearance have become increasingly important in medicine, medical ethics and medical law. Symptoms of these historically conditioned assumptions include common ageism, aesthetic surgery, and litigation about ‘wrongful life’. These phenomena suggest a societal intolerance for what is considered an ‘abnormal’ appearance. Among others, eighteenth-century artists and anatomists helped to set these twentieth-century precedents, actually measuring deviations of external traits to analogous deformations of the soul, and drawing moral conclusions from physiognomic measurements. Other eighteenth-century artists countered with (...) pathognomy, recognizing that uneven physical features may indicate humanity, instead of character flaws. We suggest that there is an important and as yet unrecognized role played by visual and perceptual preferences in our judgments concerning normalcy and anomaly. We further suggest a shift away from our current fashion-magazine, youth-oriented aesthetic, and towards an aesthetic of imperfection. Physicians and medical students can be made aware of their historically conditioned reactions to ‘abnormal’ appearing patients by studying the understandings and methods with which artists have portrayed those who are considered deformed in appearance. (shrink)

Initial responses to questionnaires used to assess participants' understanding of informed consent for malaria vaccine trials conducted in the United States and Mali were tallied. Total scores were analyzed by age, sex, literacy (if known), and location. Ninety-two percent (92%) of answers by United States participants and 85% of answers by Malian participants were correct. Questions more likely to be answered incorrectly in Mali related to risk, and to the type of vaccine. For adult participants, independent predictors of higher scores (...) were younger age and female sex in the United States, and male sex in Mali. Scores in the United States were higher than in Mali (P = 0.005). Despite this difference participants at both sites were well informed overall. Although interpretation must be qualified because questionnaires were not intended as research tools and were not standardized among sites, these results do not support concerns about systematic low understanding among research participants in developing versus developed countries. (shrink)

Aim: Patients with advanced cancer need information about end-of-life treatment options in order to make informed decisions. Clinicians vary in the frequency with which they initiate these discussions.Patients and methods: As part of a long-term longitudinal study, patients with an expected 2-year survival of less than 50% who had advanced gastrointestinal or lung cancer or amyotrophic lateral sclerosis were interviewed. Each patient’s medical record was reviewed at enrollment and at 3 months for evidence of the discussion of patient wishes concerning (...) ventilator support, artificial nutrition and hydration , resuscitation and hospice care. A Kaplan–Meier analysis was also performed and 2-year survival calculated.Results: 60 cancer and 32 ALS patients were enrolled. ALS patients were more likely than cancer patients to have evidence of discussion about their wishes for ventilator support , ANH , DNR and hospice care . At 6 months, 91% of ALS patients were alive compared with 62% of cancer patients; at 2 years, 63% of ALS patients were alive compared with 23% of cancer patients .Conclusions: Cancer patients were less likely than ALS patients to have had documented advanced care planning discussions despite worse survival. This may reflect perceptions that ALS has a more predictable course, that advanced cancer has a greater number of treatment options, or differing views about hope. Nevertheless, cancer patients may be less adequately prepared for end-of-life decision-making. (shrink)

BackgroundFor many decades, the debate on children’s competence to give informed consent in medical settings concentrated on ethical and legal aspects, with little empirical underpinnings. Recently, data from empirical research became available to advance the discussion. It was shown that children’s competence to consent to clinical research could be accurately assessed by the modified MacArthur Competence Assessment Tool for Clinical Research. Age limits for children to be deemed competent to decide on research participation have been studied: generally children of 11.2 (...) years and above were decision-making competent, while children of 9.6 years and younger were not. Age was pointed out to be the key determining factor in children’s competence. In this article we reflect on policy implications of these findings, considering legal, ethical, developmental and clinical perspectives.DiscussionAlthough assessment of children’s competence has a normative character, ethics, law and clinical practice can benefit from research data. The findings may help to do justice to the capacities children possess and challenges they may face when deciding about treatment and research options. We discuss advantages and drawbacks of standardized competence assessment in children on a case-by-case basis compared to application of a fixed age limit, and conclude that a selective implementation of case-by-case competence assessment in specific populations is preferable. We recommend the implementation of age limits based on empirical evidence. Furthermore, we elaborate on a suitable model for informed consent involving children and parents that would do justice to developmental aspects of children and the specific characteristics of the parent-child dyad.SummaryPrevious research outcomes showed that children’s medical decision-making capacities could be operationalized into a standardized assessment instrument. Recommendations for policies include a dual consent procedure, including both child as well as parents, for children from the age of 12 until they reach majority. For children between 10 and 12 years of age, and in case of children older than 12 years in special research populations of mentally compromised patients, we suggest a case-by-case assessment of children’s competence to consent. Since such a dual consent procedure is fundamentally different from a procedure of parental permission and child assent, and would imply a considerable shift regarding some current legislations, practical implications are elaborated. (shrink)

To localize wheat ESTs on chromosomes, 882 homoeologous group 6-specific ESTs were identified by physically mapping 7965 singletons from 37 cDNA libraries on 146 chromosome, arm, and sub-arm aneuploid and deletion stocks. The 882 ESTs were physically mapped to 25 regions flanked by 23 deletion breakpoints. Of the 5154 restriction fragments detected by 882 ESTs, 2043 were localized to group 6 chromosomes and 806 were mapped on other chromosome groups. The number of loci mapped was greatest on chromosome 6B and (...) least on 6D. The 264 ESTs that detected orthologous loci on all three homoeologs using one restriction enzyme were used to construct a consensus physical map. The physical distribution of ESTs was uneven on chromosomes with a tendency toward higher densities in the distal halves of chromosome arms. About 43% of the wheat group 6 ESTs identified rice homologs upon comparisons of genome sequences. Fifty-eight percent of these ESTs were present on rice chromosome 2 and the remaining were on other rice chromosomes. Even within the group 6 bins, rice chromosomal blocks identified by 1-6 wheat ESTs were homologous to up to 11 rice chromosomes. These rice-block contigs were used to resolve the order of wheat ESTs within each bin. (shrink)

Background: More and more quantitative information is becoming available about the risks of complications arising from medical treatment. In everyday practice, this raises the question whether each and every risk, however low, should be disclosed to patients. What could be good reasons for doing or not doing so? This will increasingly become a dilemma for practitioners.Objective: To report doctors’ views on whether to disclose or withhold information on low risks of complications.Methods: In a qualitative study design, 37 respondents were included. (...) Focus group interviews were held with 22 respondents and individual in-depth interviews with 15.Results: Doctors have doubts about disclosing or withholding information on complication risk, especially in a risk range of 1 in 200 to 1 in 10 000. Their considerations on whether to disclose or to withhold information depend on a complicated mix of patient and doctor-associated reasons; on medical and personal considerations; and on the kind and purpose of intervention.Discussion: Even though the degree of a risk is important in a doctor’s considerations, the severity of the possible complications and patients’ wishes and competencies have an important role as well. Respondents said that low risks should always be communicated when there are alternatives for the intervention or when the patient may prevent or mitigate the risk. When the appropriateness of disclosing risks is doubtful, doctors should always tell their patients that no intervention is without risk, give them the opportunity to gather all the information they need or want, and enable them to detect a complication at an early stage. (shrink)

This article discusses common ethical and practical considerations in psychosocial and behavioral research in healthcare. Issues such as appropriate objectives and intent, risk-benefit ratios, research design, and human subject protection are explored. The burden of ethical research design and implementation is placed on the investigator, rather than relying solely on institutional review boards to judge individual projects. The benefit of acquisition of knowledge must be balanced against the burdens of the research on society in general and human subjects specifically. Scientific (...) replication of research is encouraged, unnecessary duplication defined and discouraged, and benefits of true collaboration outlined. Investigators are advised to consider the context, intent, purpose, implementation, and use of information when developing research. The concept of “researcher myopia” is defined as a common stumbling block. It is suggested that academic researchers also look to other disciplines, such as industry, for examples of research that is concise, cost-effective, and reliable. (shrink)

BACKGROUND: Serotonin transporter promoter genotype appears to increase risk for depression in the context of stressful life events. However, the effects of this genotype on measures of stress sensitivity are poorly understood. Therefore, this study examined whether 5-HTTLPR genotype was associated with negative information processing biases in early childhood. METHOD: Thirty-nine unselected seven-year-old children completed a negative mood induction procedure and a Self-Referent Encoding Task designed to measure positive and negative schematic processing. Children were also genotyped for the 5-HTTLPR gene. (...) RESULTS: Children who were homozygous for the short allele of the 5-HTTLPR gene showed greater negative schematic processing following a negative mood prime than those with other genotypes. 5-HTTLPR genotype was not significantly associated with positive schematic processing. LIMITATIONS: The sample size for this study was small. We did not analyze more recently reported variants of the 5-HTTLPR long alleles. CONCLUSIONS: 5-HTTLPR genotype is associated with negative information processing styles following a negative mood prime in a non-clinical sample of young children. Such cognitive styles are thought to be activated in response to stressful life events, leading to depressive symptoms; thus, cognitive styles may index the "stress-sensitivity" conferred by this genotype. (shrink)

Purpose – To review and discuss Luciano Floridi’s 2019 book The Logic of Information: A Theory of Philosophy as Conceptual Design, the latest instalment in his philosophy of information (PI) tetralogy, particularly with respect to its implications for library and information studies (LIS). Design/methodology/approach – Nine scholars with research interests in philosophy and LIS read and responded to the book, raising critical and heuristic questions in the spirit of scholarly dialogue. Floridi responded to these questions. Findings – Floridi’s PI, including (...) this latest publication, is of interest to LIS scholars, and much insight can be gained by exploring this connection. It seems also that LIS has the potential to contribute to PI’s further development in some respects. Research implications – Floridi’s PI work is technical philosophy for which many LIS scholars do not have the training or patience to engage with, yet doing so is rewarding. This suggests a role for translational work between philosophy and LIS. Originality/value – The book symposium format, not yet seen in LIS, provides forum for sustained, multifaceted and generative dialogue around ideas. (shrink)

Although law is established on a strong presumption that persons younger than a certain age are not competent to consent, statutory age limits for asking children’s consent to clinical research differ widely internationally. From a clinical perspective, competence is assumed to involve many factors including the developmental stage, the influence of parents and peers, and life experience. We examined potential determining factors for children’s competence to consent to clinical research and to what extent they explain the variation in competence judgments.

This collection of essays, offered in honor of the distinguished career of prominent political philosophy professor Clifford Orwin, brings together internationally renowned scholars to provide a wide context and discuss various aspects of the virtue of “humanity” through the history of political philosophy.

The development of neuropsychological assessment methods using virtual reality (VR) is a valid and promising option for the detection of cognitive impairment in the older people, focusing on activities composed of tasks of multiple demands. This study verified the association of age, schooling, and general cognitive status on the performance of neurologically healthy older adults in ECO-VR, a virtual reality task of multiple demands for neuropsychological assessment. A total of 111 older adults answered a sociodemographic questionnaire, the Mini Mental State (...) Examination, the Vocabulary subtest of the Wechsler Intelligence Scale for Adults (third edition), and the ECO-VR. Correlation analyses, multiple linear regression, and comparisons between groups (effects by age and schooling groups) were used to evaluate the results. The ECO-VR total score was significantly associated with age, years of education, MMSE, and Vocabulary subtest. The linear regression models identified that age was the main predictor for total score and rule breaking of ECO-VR. According to the univariate analysis, it was identified the main effect of age group and schooling group in the total ECO-VR score, but there was no interaction effect. The results are discussed in order to understand the role of sociodemographic characteristics in the performance of older adults in a virtual reality task of multiple demands. It was also verified the possibility use of virtual reality for neuropsychological assessment of older adults. (shrink)

The aim of the present investigation was to describe and to classify significant ethical problems encountered by the members of the staff during the daily clinical work at a hospital medical department. A set of definitions was prepared for the purpose, including the definition of a 'significant ethical problem'. During a three month period 426 inpatients and 173 outpatients were admitted. Significant ethical problems were encountered during the management of 106 in-patients (25 per cent) and 9 out-patients (5 per cent). (...) No significant difference was found between the frequency of ethical problems in female and male patients, but a positive correlation was noted between the number of problems and the patients' age. The problem types were classified according to a problem list. The results of this investigation suggest that greater attention must be paid to discussions about ethical problems among doctors and other categories of health personnel and that, among others, medical students ought to be taught the analysis of ethical problems. (shrink)