Demented patients and the quandaries of identity: setting the problem, advancing a proposal.

In the paper, after clarifying terms such as 'identity', 'self' and 'personhood', I propose an empirical account of identity based on the notion of "whole phenotype". This move allows one to claim the persistence of the individuals before and after their being affected by dementia. Furthermore, I show how this account permits us to address significant questions related to demented individuals' loss of the capacity of moral decisions.

[Artificial intelligence in ophthalmology : Guidelines for physicians for the critical evaluation of studies]. / Künstliche Intelligenz in der Augenheilkunde : Leitfaden für Ärzte zur kritischen Bewertung von Studien.

BACKGROUND: Empirical models have been an integral part of everyday clinical practice in ophthalmology since the introduction of the Sanders-Retzlaff-Kraff (SRK) formula. Recent developments in the field of statistical learning (artificial intelligence, AI) now enable an empirical approach to a wide range of ophthalmological questions with an unprecedented precision. OBJECTIVE: Which criteria must be considered for the evaluation of AI-related studies in ophthalmology? MATERIAL AND METHODS: Exemplary prediction of visual acuity (continuous outcome) and classification of healthy and diseased eyes (discrete outcome) using retrospectively compiled optical coherence tomography data (50 eyes of 50 patients, 50 healthy eyes of 50 subjects). The data were analyzed with nested cross-validation (for learning algorithm selection and hyperparameter optimization). RESULTS: Based on nested cross-validation for training, visual acuity could be predicted in the separate test data-set with a mean absolute error (MAE, 95% confidence interval, CI of 0.142 LogMAR [0.077; 0.207]). Healthy versus diseased eyes could be classified in the test data-set with an agreement of 0.92 (Cohen's kappa). The exemplary incorrect learning algorithm and variable selection resulted in an MAE for visual acuity prediction of 0.229 LogMAR [0.150; 0.309] for the test data-set. The drastic overfitting became obvious on comparison of the MAE with the null model MAE (0.235 LogMAR [0.148; 0.322]). CONCLUSION: Selection of an unsuitable measure of the goodness-of-fit, inadequate validation, or withholding of a null or reference model can obscure the actual goodness-of-fit of AI models. The illustrated pitfalls can help clinicians to identify such shortcomings.

Catching TFSI: A Computational-Experimental Approach to ß-Cyclodextrin-Based Host-Guest Systems as electrolytes for Li-Ion Batteries.

Cyclodextrins (CDs) are pyranoside-based macromolecules with a hydrophobic cavity to encapsulate small molecules. They are used as molecular vehicles, for instance in pharmaceutical drug delivery or as solubility enhancer of monomers for their polymerization in aqueous solution. In this context, it was discovered about 10 years ago that the bis(trifluoromethylsulonyl)imide (TFSI) anion forms host-guest complexes with ßCD in aqueous media. This sparked interest in using the TFSI anion in lithium-based battery electrolytes open for its encapsulation by ßCD as an attractive approach to increase the contribution of the cation to the total ion conductivity. By using semi-empirical quantum mechanical (SQM) methods and the conductor-like screening model for a real solvent (COSMO-RS), a randomly methylated ßCD (RMßCD) is here identified as a suitable host for TFSI when using organic solvents often used in battery technology. By combining molecular dynamics (MD) simulations with different NMR and FTIR experiments, the formation of the corresponding RMßCD-TFSI complex was investigated. Finally, the effects of the addition RMßCD to a set of electrolytes on the ion conductivity are measured and explained using three distinct scenarios.

Constructing a Database of Similar Exposure Groups: The Application of the Exporisq-HAP Database from 1995 to 2015.

Background: Similar exposure groups (SEGs) are needed to reliably assess occupational exposures and health risks. However, the construction of SEGs can turn out to be rather challenging because of the multifactorial variability of exposures. Objectives: The objective of this study is to put forward a semi-empirical approach developed to construct and implement a SEG database for exposure assessments. An occupational database of airborne levels of polycyclic aromatic hydrocarbons (PAHs) was used as an illustrative and working example. Methods: The approach that was developed consisted of four steps. The first three steps addressed the construction and implementation of the occupational Exporisq-HAP database (E-HAP). E-HAP was structured into three hierarchical levels of exposure groups, each of which was based on exposure determinants, along 16 dimensions that represented the sampled PAHs. A fourth step was implemented to identify and generate SEGs using the geometric standard deviation (GSD) of PAH concentrations. Results: E-HAP was restructured into 16 (for 16 sampled PAHs) 3 × 3 matrices: three hierarchical levels of description versus three degrees of dispersion, which included low (the SEG database: GSD ≤ 3), medium (3 < GSD ≤ 6), and high (GSD > 6). Benzo[a]pyrene (BaP) was the least dispersed particulate PAH with 41.5% of groups that could be considered as SEGs, 48.5% of groups of medium dispersion, and only 8% with high dispersion. These results were comparable for BaP, BaP equivalent toxic, or the sum of all carcinogenic PAHs but were different when individual gaseous PAHs or ∑PAHG were chosen. Conclusion: Within the framework of risk assessment, such an approach, based on groundwork studies, allows for both the construction of an SEG database and the identification of exposure groups that require improvements in either the description level or the homogeneity degree toward SEG.

Organ procurement organizations Internet enrollment for organ donation: abandoning informed consent.

BACKGROUND: Requirements for organ donation after cardiac or imminent death have been introduced to address the transplantable organs shortage in the United States. Organ procurement organizations (OPOs) increasingly use the Internet for organ donation consent. METHODS: An analysis of OPO Web sites available to the public for enrollment and consent for organ donation. The Web sites and consent forms were examined for the minimal information recommended by the United States Department of Health and Human Services for informed consent. Content scores were calculated as percentages of data elements in four information categories: donor knowledge, donor consent reinforcement, donation promotion, and informed consent. RESULTS: There were 60 Web sites for organ donation enrollment serving the 52 states. The median percent (10 percentile-90 percentile) content scores of the Web sites for donor knowledge, donor consent reinforcement, and donation promotion were 33% (20-47), 79% (57-86), and 75% (50-100), respectively. The informed consent score was 0% (0-33). The content scores for donor knowledge and informed consent were significantly lower than donor consent reinforcement and donation promotion for all Web sites (P < .05). The content scores for the four categories were similar among the 11 regions of the United Network for Organ Sharing. CONCLUSION: The Web sites and consent forms for public enrollment in organ donation do not fulfill the necessary requirements for informed consent. The Web sites predominantly provide positive reinforcement and promotional information rather than the transparent disclosure of organ donation process. Independent regulatory oversight is essential to ensure that Internet enrollment for organ donation complies with legal and ethical standards for informed consent.

Consenting of the vulnerable: the informed consent procedure in advanced cancer patients in Mexico.

BACKGROUND: A topic of great concern in bioethics is the medical research conducted in poor countries sponsored by wealthy nations. Western drug companies increasingly view Latin America as a proper place for clinical research trials. The region combines a large population, modern medical facilities, and low per capita incomes. Participants from developing countries may have little or non alternative means of treatment other than that offered through clinical trials. Therefore, the provision of a valid informed consent is important. METHODS: To gain insight about some aspects of the informed consent procedure in a major cancer centre in Mexico, we conducted a three-step evaluation process: 1) a ten point multiple choice survey questionnaires, was used to explore some aspects of the patients' experiences during the informed consent process, 2) researchers' knowledge about specific aspects of the informed consent was evaluated in this study using survey questionnaires; and 3) the comprehensibility, readability and number of pages of the consent forms were analysed. The socioeconomic and educational level of the patients, were also considered. Results were reported using a numerical scale. RESULTS: Thirty five patients, 20 doctors, and 10 individuals working at the hospital agreed to participate in the study. Eighty three percent of the patients in the study were classified as living in poverty; education level was poor or non existent, and 31% of the patients were illiterate. The consent forms were difficult to understand according to 49% of the patients, most doctors agreed that the forms were not comprehensible to the patients. The average length of the IC documents analysed was 14 pages, and the readability average score was equivalent to 8th grade. CONCLUSION: The results presented in this work describe some relevant characteristics of the population seen at public health care institutions in Mexico. Poverty, limited or no education, and the complexity of the information provided to the patients may question the validity of the informed consent procedure in this group of patients.

Abortion: pro and contra.

To kill a new life before it's born, to do an abortion. This is a problem of many generations. In the evolution of human civilization, the attitude concerning abortion was different in different cultures, periods, societies. The aim of our study is to evaluate the actual opinion and attitude of young persons, students, and residents in medicine in Timisoara city, and the situation of the whole country. We performed a questionnaire for 400 people, between the ages of 19 and 28 with superior studies. The group is composed of 320 (80%) women and 80 (20%) men. We accepted for recording and analyzing all the the completed questionnaires. The questions referred to the topic of abortion in the antecedents, and asked if they had had one, how it affected the life of the women and her family, the circumstances of acceptance of abortion today, religious aspects and different other aspects.

Childbirth in modern Athens: the transition from homebirth to hospital birth.

The transition of birthing practices in Greece from a homebirth culture, in which women deliver at home surrounded by family and under the supervision of a typically female birth attendant, to a biomedical birth model, in which women deliver in a hospital with numerous forms of medical intervention and under the control of a physician, has been unusually rapid. Today, Western biomedicine not only dominates the health care system in Greece but has an essential hegemony on women's health care. My research examines whether the pervasive utilization of biomedical environments for birthing can be explained by a lack of alternatives or by women's satisfaction with the technology and care available in hospitals. I also examine how women retain control over their experience of pregnancy and childbirth within the biomedical context and attempt to explain the emerging construction of a "natural" discourse on pregnancy and childbirth in Athens. Major themes that emerged from interviews with Athenian women were the lack of consent for medical intervention during birth, limited infrastructure to support women who seek non-medical alternatives, and limited emotional support and collective education for mothers in the urban environment of Athens. Also, women described choosing the right caregiver as essential to maintaining a sense of control over their pregnancy and, more generally, over their life. In light of women's apparent interest in improving women's experience of pregnancy and childbirth in Athens, it is recommended that researchers further explore the interaction of medical and non-medical discourses on pregnancy and childbirth.

[Desire for a child and desired children--possibilities and limits of reproductive biomedicine]. / Kinderwunsch und Wunschkinder: Moglichkeiten und Grenzen der In-vitro-Fertilisations-Behandlung.

UNLABELLED: Definition of problem: BACKGROUND: Reproductive Biomedicine and new reproductive technologies (ART) belong to the fields of medicine that initiated most of the discussion on enhancement and desire fulfilling medicine in bioethics during the last years. One of the crucial questions to be answered is the definition of the right to procreate/right for a genetically related child. Closely connected are controversial opinions in regard to the definition of sterility as a disease/illness, or a mere fate, or malfunction, which does not have to be medically cured. Arguments: After a cursory description of the national and international debate, we introduce some results of our 'bioethical field studies', exploring and comparing the views of experts (human geneticists, ethicists, pediatricians, obstetricians and midwifes) and couples/patients (IVF couples, high genetic risk couples and couples with no known risk for an inherited disease or infertility problem) on sterility, the right to procreate, possibilities and appropriate limits of IVF in Germany. CONCLUSION: According to the WHO, sterility has to be defined as an illness, if the respective couples have a desire for a child. IVF can be a means for a cure. Since 2004, Germany does no longer supply a thoroughly insurer financed IVF treatment. Our surveys indicate that this change, though supported by many experts, is hard to accept for couples concerned. Only obstetricians share the WHO's view that sterility should count as an illness. Many ethicists see a proclaimed human right to procreate as merely negative right, although many support free IVF treatment for poor couples. We challenge the expert majority view on the basis of the capability approach (Amartya Sen) and functional liberalism (Herlinde Pauer Studer) and with a view to the international state of the art in IVF. The desire to have children cannot be reduced to a non-authoritative preference whose fulfillment is optional, but has to be conceptualized as a normative need that ought to be met.

Procedural misconceptions and informed consent: insights from empirical research on the clinical trials industry.

This paper provides a simultaneously reflexive and analytical framework to think about obstacles to truly informed consent in social science and biomedical research. To do so, it argues that informed consent often goes awry due to procedural misconceptions built into the research context. The concept of procedural misconception is introduced to describe how individuals respond to what is familiar in research settings and overlook what is different. In the context of biomedical research, procedural misconceptions can be seen to function as root causes of therapeutic misconceptions.

Research misconduct policies of high impact biomedical journals.

Several national and international organizations have recommended policies regarding journal responsibilities about research misconduct in submitted or published manuscripts. A search of Web sites of the fifty highest impact journals in a cluster of biomedical fields and a limited survey of their editors shows that few journals have formally adopted standards for dealing with questions of research misconduct. Publicly available policies may have a deterrent effect and can prevent arbitrariness in handling cases.