Rationalisierung, Rationierung, Priorisierung: Terminologie und ethische Begründungsansätze zur Allokation bei begrenzten Ressourcen in der Hämatologie/Onkologie

Rationalization, Rationing, Prioritization: Terminology and Ethical Approaches to the Allocation of Limited Resources in Hematology/Oncology The field of oncology with its numerous high-priced innovations contributes considerably to the fact that medical progress is expensive. Additionally, due to the demographic changes and the increasing life expectancy, a growing number of cancer patients want to profit from this progress. Since resources are limited also in the health system, the fair distribution of the available resources urgently needs to be addressed. Dealing with scarcity is a typical problem in the domain of justice theory; therefore, this article first discusses different strategies to manage limited resources: rationalization, rationing, and prioritization. It then presents substantive as well as procedural criteria that assist in the just distribution of effective health benefits. There are various strategies to reduce the utilization of limited resources: Rationalization means that efficiency reserves are being exhausted; by means of rationing, effective health benefits are withheld due to cost considerations. Rationing can occur implicitly and thus covertly, e. g. through budgeting or the implementation of waiting periods, or explicitly, through transparent rules or policies about healthcare coverage. Ranking medical treatments according to their importance (prioritization) is often a prerequisite for rationing decisions. In terms of requirements of justice, both procedural and substantive criteria (e. g. equality, urgency, benefit) are relevant for the acceptance and quality of a decision to limit access to effective health benefits

Alexa, Can You Help Me Solve That Problem? – Understanding the Value of Smart Personal Assistants as Tutors for Complex Problem Tasks

In recent decades, the number of students per lecturer at universities has constantly risen. In these learning scenarios, individual lecturer support for helping students actively acquiring new knowledge is hardly possible. However, active student behavior is necessary for successful learning. Smart Personal Assistants such as Amazon’s Alexa or Google’s Home promise to fill this gap by being students’ individual tutors. In order to understand what students expect from Smart Personal Assistants as tutors and how they interact with them, we will carry out an experiment. In this research in progress paper, we present our experiment design, where we observe the individual interaction between students and a Smart Personal Assistant tutor and between students and a human tutor applying the same methods in both cases. Drawing on the concepts of parasocial interaction and trust, we derive hypotheses, present the Smart Personal Assistant development and explain the experiment process in detail

Contribution of the Rise in Cohabiting Parenthood to Family Instability: Cohort Change in Italy, Great Britain, and Scandinavia

In this study, we investigate through microsimulation the link between cohabiting parenthood and family instability. We identify mechanisms through which increases in cohabiting parenthood may contribute to overall increases in separation among parents, linking micro-level processes to macro-level outcomes. Analyses are based on representative surveys in Italy, Great Britain, and Scandinavia (represented by Norway and Sweden), with full histories of women's unions and births. We first generate parameters for the risk of first and higher-order birth and union events by woman's birth cohort and country. The estimated parameters are used to generate country- and cohort-specific populations of women with stochastically predicted family life courses. We use the hypothetical populations to decompose changes in the percentage of mothers who separate/divorce across maternal birth cohorts (1940s to 1950s, 1950s to 1960s, 1960s to 1970s), identifying how much of the change can be attributed to shifts in union status at first birth and how much is due to change in separation rates for each union type. We find that when cohabiting births were uncommon, increases in parents' separation were driven primarily by increases in divorce among married parents. When cohabiting parenthood became more visible, it also became a larger component, but continued increases in parents' divorce also contributed to increasing parental separation. When cohabiting births became quite common, the higher separation rates of cohabiting parents began to play a greater role than married parents' divorce. When most couples had their first birth in cohabitation, those having children in marriage were increasingly selected from the most stable relationships, and their decreasing divorce rates offset the fact that increasing proportions of children were born in somewhat less stable cohabiting unions

Evaluating a patient's request for life-prolonging treatment: an ethical framework

Contrary to the widespread concern about over-treatment at the end of life, today, patient preferences for palliative care at the end of life are frequently respected. However, ethically challenging situations in the current healthcare climate are, instead, situations in which a competent patient requests active treatment with the goal of life-prolongation while the physician suggests best supportive care only. The argument of futility has often been used to justify unilateral decisions made by physicians to withhold or withdraw life-sustaining treatment. However, we argue that neither the concept of futility nor that of patient autonomy alone is apt for resolving situations in which physicians are confronted with patients' requests for active treatment. Instead, we integrate the relevant arguments that have been put forward in the academic discussion about 'futile' treatment into an ethical algorithm with five guiding questions: (1) Is there a chance that medical intervention will be effective in achieving the patient's treatment goal? (2) How does the physician evaluate the expected benefit and the potential harm of the treatment? (3) Does the patient understand his or her medical situation? (4) Does the patient prefer receiving treatment after evaluating the benefit-harm ratio and the costs? (5) Does the treatment require many resources? This algorithm shall facilitate approaching patients' requests for treatments deemed futile by the physician in a systematic way, and responding to these requests in an ethically appropriate manner. It thereby adds substantive considerations to the current procedural approaches of conflict resolution in order to improve decision making among physicians, patients and families

The New EEC Block Exemption Regulation on Franchising

This article discusses regulation of franchising within the European Community and its effect on competition policy. In part I the author gives a general presentation of the regulation, in part II the author discusses the scope of the regulation, in Part III the author discusses the substantive provisions of the regulation, and in the Conclusion the author suggests potential solutions

Carbon emissions of retail channels: the limits of available policy instruments to achieve absolute reductions

Buying the same product at the neighborhood store or at a shopping mall implies different carbon emissions. This paper quantifies carbon impacts of consumer choices of retail channel and shop location (where to buy), extending footprint assessments of product choices (what to buy). Carbon emissions of shopping situations are shown in the current situation, in a business-as-usual projection in 2020, and in policy scenarios with changed market shares of shopping situations. The analysis covers the product categories: groceries, clothing, and electronics & computers, from the shopping situations: neighborhood store, town center, discount store, shopping mall, and mail order/online selling. Stages of the product life cycle which differ between shopping situations are examined: freight transport, warehousing, store operation, and the last mile of the consumers' trip to the store. Carbon emissions of shopping situations amount to 2.7% of overall Austrian emissions in the base year. Dominant car use on the last mile substantially contributes to the overall footprint. In the business-as-usual scenario, carbon emissions from shopping situations increase by +33% until 2020, corresponding to 4.2% of the overall Austrian emissions target for 2020. Restricting shopping malls or supporting neighborhood stores could limit this increase to +25% and +20%, respectively. Facilitating online selling achieves no notable effects. The study underlines that an absolute reduction in private demand for household goods is necessary, as available policy instruments aiming at shopping situations fail to compensate the steady growth in private consumption

Ethical Discourse on Epigenetics and Genome Editing: The Risk of (Epi-) genetic Determinism and Scientifically Controversial Basic Assumptions

Excerpt: 1. Introduction This chapter provides insight into the diverse ethical debates on genetics and epigenetics. Much controversy surrounds debates about intervening into the germline genome of human embryos, with catchwords such as genome editing, designer baby, and CRISPR/Cas. The idea that it is possible to design a child according to one’s personal preferences is, however, a quite distorted view of what is actually possible with new gene technologies and gene therapies. These are much more limited than the editing and design metaphors suggest. Such metaphors are therefore highly problematic phrases in the context of new gene technologies, for two reasons. On one hand, to design a child of choice by modifying the genome would require modifying any gene of choice, which is more than can be done with current gene technologies, such as CRISPR/Cas. On the other hand, a modification of genes would need to be enough to create any characteristic of choice in the future child. The latter presupposes the assumption of genetic determinism. Moreover, the CRISPR/Cas technology can not only be used in a potentially therapeutic manner at the germline level. In addition, there is the (more likely) scenario of a future clinical therapeutic use of these new gene technologies for modifying the DNA sequence of other cells of the body (somatic genome editing). There is also the option of modifying the epigenome, that is, the spatial configuration of DNA (epigenome editing) (see table 1). Like genetics and genome editing, epigenetics has been at the center of recent popular scientific and ethical discourse as well as scientific debates. The concept of epigenetics has given rise to very different notions of inheritability and responsibility for health, which, however, are oftentimes based on scientifically controversial basic assumptions. That there continues to be covert genetic determinism in the form of epigenetic determinism (see table 2) in debates about epigenetics has been pointed out in ethical analyses of epigenetics. Neither genetic determinism nor epigenetic determinism has been confirmed scientifically. It is therefore important to recognize the concepts that are discussed (and sometimes harshly criticized) in debates about genome editing and epigenetics—for example, concepts about the causal role of DNA for our own life course. This importance is based on the fact that if we understand such controversial concepts, we will be able to remain critical when evaluating scientific knowledge and ethical arguments about genome editing and epigenetics. This chapter, therefore, explains some of these concepts. For an ethical analysis of epigenetics as well as of genome editing, it is necessary to understand and critically reflect upon the underlying concepts of genetic determinism and other, related -isms. The following section offers a detailed introduction to these -isms (section 2; see also table 2). Section 3 provides an ethical analysis of genome editing and epigenetics based on the explanations in section 2. Section 3 focuses on inheritability and responsibility, justice, safety, the problem of consent, and the effects of genome editing and epigenetics on embryos and future generations. This section does not discuss in detail further points that can be found in ethical debates about epigenetics as well as in ethical debates about genome editing. These points include (among others): • fear that the findings of epigenetics and that the methods of genome editing are misused—this also with respect to eugenics and enhancement; • naturalness—an issue we mention in passing a few times in the following analysis; • a possible connection between the genome/epigenome and the concept of human dignity, and the derived danger of instrumentalization and infringement of autonomy when intervening in the genome or epigenome. Since current discourse about ethical issues associated with genome editing focuses mainly on germline interventions, which are, for instance, interventions into a human embryo’s genome, we mainly focus on germline interventions when comparing the debates on genome editing and on epigenetics in section 3

Applying systems biology to biomedical research and health care: a précising definition of systems medicine

Background: Systems medicine has become a key word in biomedical research. Although it is often referred to as P4-(predictive, preventive, personalized and participatory)-medicine, it still lacks a clear definition and is open to interpretation. This conceptual lack of clarity complicates the scientific and public discourse on chances, risks and limits of Systems Medicine and may lead to unfounded hopes. Against this background, our goal was to develop a sufficiently precise and widely acceptable definition of Systems Medicine. Methods: In a first step, PubMed was searched using the keyword “systems medicine”. A data extraction tabloid was developed putting forward a means/ends-division. Full-texts of articles containing Systems Medicine in title or abstract were screened for definitions. Definitions were extracted; their semantic elements were assigned as either means or ends. To reduce complexity of the resulting list, summary categories were developed inductively. In a second step, we applied six criteria for adequate definitions (necessity, non-circularity, non-redundancy, consistency, non-vagueness, and coherence) to these categories to derive a so-called précising definition of Systems Medicine. Results: We identified 185 articles containing the term Systems Medicine in title or abstract. 67 contained at least one definition of Systems Medicine. In 98 definitions, we found 114 means and 132 ends. From these we derived the précising definition: Systems Medicine is an approach seeking to improve medical research (i.e. the understanding of complex processes occurring in diseases, pathologies and health states as well as innovative approaches to drug discovery) and health care (i.e. prevention, prediction, diagnosis and treatment) through stratification by means of Systems Biology (i.e. data integration, modeling, experimentation and bioinformatics). Our study also revealed the visionary character of Systems Medicine. Conclusions: Our insights, on the one hand, allow for a realistic identification of actual ethical as well as legal issues arising in the context of Systems Medicine and, in consequence, for a realistic debate of questions concerning its matter and (future) handling. On the other hand, they help avoiding unfounded hopes and unrealistic expectations. This especially holds for goals like improving patient participation which are intensely debated in the context of Systems Medicine, however not implied in the concept