Lay perceptions of genetic testing in Germany and Israel: the interplay of national culture and individual experience

Germany and Israel represent opposite regulatory approaches and bioethical outlooks regarding genetic testing. This study examines lay attitudes (including attitudes of people affected by genetic diseases) in both countries towards genetic testing of adults, focusing on the differences between cultural and personal argumentations, as well as between affected and non-affected perspectives. With regard to three major emerging themes – medical technology/technocratic medicine; economic aspects of healthcare; and personal decision-making – a national contrast was apparent on the cultural level of argumentation, but not in the personal context of decision-making or in the concerns of people affected by genetic diseases. We conclude by discussing the interplay of national culture and individual experience in constructing arguments about the harms and benefits of genetic testing, and the implications for the study of cross-cultural bioethics in the context of “genetic responsibility”.     

Applications of cell-based phage display panning to proteomic analysis

In the post-genomic era, proteomics together with genomic tools have led to powerful new strategies in basic and clinical research. These combined “omics” technologies are being integrated into the drug target discovery process. Unlike the genome, the proteome is a highly dynamic entity that requires techniques capable of analyzing on selected populations of proteins in specific biological conditions that reflect the proteins’ functional characteristics. Antibodies have become one of the most important reagents for the analysis of selected populations of proteins, and the application of phage-display antibody libraries to high-throughput antibody generation against large numbers of various antigens provides a tool for proteome-wide protein expression analysis. In this review, we will discuss the utility of phage-display antibodies in proteomics applications, specifically for the discovery of novel disease markers and therapeutic targets.     

LGBT+ Individuals’ Perceptions of Healthcare Services in Turkey: A Cross-sectional Qualitative Study

When accessing healthcare services, LGBT+ individuals are often exposed to segregating and marginalizing discourses. Knowledge about how such experiences are reflected in the moral world of LGBT+ individuals living in Turkey is limited. This study examined LGBT+ individuals’ lived experiences when utilizing healthcare services. The findings are discussed in terms of moral discourses related to LGBT+ individuals’ gender identity and sexual orientation. A qualitative field study was conducted using semi-structured interviews with fifty-five LGBT+ individuals from Turkish cities who were in contact with various non-governmental organizations that conduct studies on gender identity and sexual orientation. A questionnaire was administered with items on participants’ demographic information, experiences, behavioural patterns, and knowledge regarding healthcare services. The data were analysed thematically. The findings were evaluated within the framework of “access to healthcare service” theme related to “healthcare service demand” context. Additionally, the “interaction with physicians” theme was addressed in the context of “physician–patient/counselee relationship.” LGBT+ individuals state that they are exposed to stigmatizing and segregating discourses by healthcare professionals, which might pose an obstacle for adaptive health-seeking behaviours. These results suggest that physicians’ professional approach has a considerable influence on LGBT+ individuals’ capacity for utilizing healthcare services.     

L’évaluation des nouvelles technologies en santé : un nouveau besoin,l’évaluation de l’adaptation à l’usage

In healthcare, technologies have a critical role in diagnostic, treatment and monitoring of the patients, either in hospitals settings or at home. But in order to be used in clinical routine, their assessment does not always comply with strict scientific criteria. In some situations, these technologies can also turn out useless, too costly or dangerous when integrated without precaution in the healthcare professional environment. In France, to address this issue, the Ministry of Health and the National Agency for Research in Medicine have installed new “Innovative Technologies” (IT) modules attached to existing Centres for Clinical Research (CRC). Eight CRC-IT (in short, CIT) have been accredited in different technological domains. They may support and secure the dissemination of promising IT applications in healthcare by assessing (i) the actual benefit for the patients, or medical service rendered, (ii) the potential drawbacks and (iii) the anticipated Return On Investment for the healthcare system. The procedures used to evaluate other healthcare innovations such as new drugs cannot be applied for the evaluation of innovative technologies. CIT also have to adapt their methodology to the type of device and domain. Besides the impact on the patient or public health, CIT are able to analyze the impact of innovative technologies on the quality of care and on their use by professionals.     

Dimensions of responsibility in medical genetics: exploring the complexity of the “duty to recontact”

Discussion of a “duty to recontact” emerged as technological advances left professionals considering getting back in touch with patients they had seen in the past. While there has been much discussion of the duty to recontact as a matter of theory and ethics, there has been rather little empirically based analysis of what this “duty” consists of. Drawing on interviews with 34 professionals working in, or closely with, genetics services, this paper explores what the “duty to recontact” means for healthcare professionals involved in genetics. Using a discourse analytic framework, the paper identifies three system generated discourses on recontact (governance, legal and responsibilizing discourses) and three lifeworld discourses (situating recontact as a formal duty; more loosely as an obligation; and as a personal sense of responsibility). In summary, the paper shows that the “duty” to recontact involves a complex interplay of system responsibilities with professional duties, responsibilities and obligations.     

Managing ethical challenges around misattributed parentage within the clinical context: Insights from an African moral theory

This study argues the thesis that a set of guidelines ‐ firmly rooted in a particular interpretation of African moral theory, specifically, Ubuntu – will do a better job than current medical ethics frameworks, in addressing ethical challenges around misattributed parentage within the clinical context. Incidental information such as information with significant personal/health implications raises unique challenges for medical professionals. For example, withholding information of misattributed paternity accidentally discovered in clinical interactions may be seen by a patient as a violation of his/her right‐to‐know. Contrarily, disclosure where a patient has not requested information – or where establishing paternity is not the purpose of clinical visit/interaction – may be taken by the patient as a violation of his/her right ‘not‐to‐know’. Resolving these challenges remain a herculean task. African moral theory contains an under‐emphasized value for addressing such ethical challenges around misattributed parentage in the field of transplant. I seek to contribute this knowledge; and enhance clinician‐patient relationship. This study builds off three completed systematic reviews, which aimed to answer the following questions: “what are the ethical challenges regarding information health professionals face within the clinical contest?” and “what core aspects (or common themes) of Ubuntu can be identified in existing literature describing the same?” In this present study, I applied the definition of Ubuntu which captures the core aspects of the theory in ethical literature on the same, to address ethical issues around unsought information of misattributed parentage in the field of transplant.     

Potential for industrial ecology to support healthcare sustainability: Scoping review of a fragmented literature and conceptual framework for future research

Healthcare is a critical service sector with a sizable environmental footprint from both direct activities and the indirect emissions of related products and infrastructure. As in all other sectors, the “inside‐out” environmental impacts of healthcare (e.g., from greenhouse gas emissions, smog‐forming emissions, and acidifying emissions) are harmful to public health. The environmental footprint of healthcare is subject to upward pressure from several factors, including the expansion of healthcare services in developing economies, global population growth, and aging demographics. These factors are compounded by the deployment of increasingly sophisticated medical procedures, equipment, and technologies that are energy‐ and resource‐intensive. From an “outside‐in” perspective, on the other hand, healthcare systems are increasingly susceptible to the effects of climate change, limited resource access, and other external influences. We conducted a comprehensive scoping review of the existing literature on environmental issues and other sustainability aspects in healthcare, based on a representative sample from over 1,700 articles published between 1987 and 2017. To guide our review of this fragmented literature, and to build a conceptual foundation for future research, we developed an industrial ecology framework for healthcare sustainability. Our framework conceptualizes the healthcare sector as comprising “foreground systems” of healthcare service delivery that are dependent on “background product systems.” By mapping the existing literature onto our framework, we highlight largely untapped opportunities for the industrial ecology community to use “top‐down” and “bottom‐up” approaches to build an evidence base for healthcare sustainability.     

Novel Genomic Tools and Modern Genetic and Breeding Approaches for Crop Improvement

In recent past, genomic tools especially molecular markers have been extensively used for understanding genome dynamics as well for applied aspects in crop breeding. Several new genomics technologies such as next generation sequencing (NGS), high-throughput marker genotyping, -omics technologies have emerged as powerful tools for understanding genome variation in crop species at DNA, RNA as well as protein level. These technologies promise to provide an insight into the way gene(s) are expressed and regulated in cell and to unveil metabolic pathways involved in trait(s) of interest for breeders not only in model-/major- but even for under-resourced crop species which were once considered “orphan” crops. In parallel, genetic variation for a species present not only in cultivated genepool but even in landraces and wild species can be harnessed by using new genetic approaches such as advanced-backcross QTL (AB-QTL) analysis, introgression libraries (ILs), multi-parent advanced generation intercross (MAGIC) population and association genetics. The gene(s) or genomic regions, responsible for trait(s) of interest, identified either through conventional linkage mapping or above mentioned approaches can be introgressed or pyramided to develop superior genotypes through molecular breeding approaches such as marker-assisted back crossing (MABC), marker assisted recurrent selection (MARS) and genome wide selection (GWS). This article provides an overview on some recent genomic tools and novel genetic and breeding approaches as mentioned above with a final aim of crop improvement.     

Health Professionals “Make Their Choice”: Pharmaceutical Industry Leaders’ Understandings of Conflict of Interest

Conflicts of interest, stemming from relationships between health professionals and the pharmaceutical industry, remain a highly divisive and inflammatory issue in healthcare. Given that most jurisdictions rely on industry to self-regulate with respect to its interactions with health professionals, it is surprising that little research has explored industry leaders’ understandings of conflicts of interest. Drawing from in-depth interviews with ten pharmaceutical industry leaders based in Australia, we explore the normalized and structural management of conflicts of interest within pharmaceutical companies. We contrast this with participants’ unanimous belief that the antidote to conflicts of interest with health professionals were “informed consumers.” It is, thus, unlikely that a self-regulatory approach will be successful in ensuring ethical interactions with health professionals. However, the pharmaceutical industry’s routine and accepted practices for disclosing and managing employees’ conflicts of interest could, paradoxically, serve as an excellent model for healthcare.     

Closing the Gap between Knowledge and Clinical Application: Challenges for Genomic Translation

Despite early predictions and rapid progress in research, the introduction of personal genomics into clinical practice has been slow. Several factors contribute to this translational gap between knowledge and clinical application. The evidence available to support genetic test use is often limited, and implementation of new testing programs can be challenging. In addition, the heterogeneity of genomic risk information points to the need for strategies to select and deliver the information most appropriate for particular clinical needs. Accomplishing these tasks also requires recognition that some expectations for personal genomics are unrealistic, notably expectations concerning the clinical utility of genomic risk assessment for common complex diseases. Efforts are needed to improve the body of evidence addressing clinical outcomes for genomics, apply implementation science to personal genomics, and develop realistic goals for genomic risk assessment. In addition, translational research should emphasize the broader benefits of genomic knowledge, including applications of genomic research that provide clinical benefit outside the context of personal genomic risk.     

Defining Ourselves: Personal Bioinformation as a Tool of Narrative Self-Conception

Where ethical or regulatory questions arise about an individual’s interests in accessing bioinformation about herself (such as findings from screening or health research), the value of this information has traditionally been construed in terms of its clinical utility. It is increasingly argued, however, that the “personal utility” of findings should also be taken into account. This article characterizes one particular aspect of personal utility: that derived from the role of personal bioinformation in identity construction. The suggestion that some kinds of information are relevant to identity is not in itself new. However, the account outlined here seeks to advance the debate by proposing a conception of the relationship between bioinformation and identity that does not depend on essentialist assumptions and applies beyond the narrow genetic contexts in which identity is customarily invoked. The proposal is that the identity-value of personal bioinformation may be understood in terms of its instrumental role in the construction of our narrative identities, specifically that its value lies in helping us to develop self-narratives that support us in navigating our embodied existences. I argue that this narrative conception provides useful insights that are pertinent to the ethical governance of personal bioinformation. It illuminates a wider range of ethical considerations in relation to information access; it accounts for variations in the utility of different kinds of information; and it highlights that the context in which information is conveyed can be as important as whether it is disclosed at all. These arguments are illustrated using an example drawn from psychiatric neuroimaging research.     

Negotiating “The Social” and Managing Tuberculosis in Georgia

In this paper I utilize anthropological insights to illuminate how health professionals and patients navigate and negotiate what for them is social about tuberculosis in order to improve treatment outcomes and support patients as human beings. I draw on ethnographic research about the implementation of the DOTS (Directly Observed Therapy, Short Course) approach in Georgia’s National Tuberculosis Program in the wake of the Soviet healthcare system. Georgia is a particularly unique context for exploring these issues given the country’s rich history of medical professionalism and the insistence that the practice of medicine is a moral commitment to society. I argue for critical attention to the ways in which treatment recipients and providers navigate what, for them, is “social” about therapeutic practices and their significance for avoiding biological and social reductionism.     

No water for the poor: the Roma ethnic minority and local governance in Slovakia

This article contributes to the emerging critiques of inequalities in the access to water by focusing on three inter-related aspects: affordability, accessibility and quality of water. Based on extensive fieldwork, the paper explores the situation in segregated Roma settlements in Slovakia and highlights the critical role of power asymmetries at a local level. It builds a conceptual framework using Bourdieu’s notions of “social field”, “habitus”, “doxa”, and “capital”, highlighting the central role of power asymmetries at a local level. Insights are drawn on how dominantly positioned social actors command decision-making regarding water supply, and how social hierarchies, inequalities and the “positionality” of Roma as a marginalized group are functional to the lack of political will to address insufficient water access for Roma in any efficient manner.     

Mitochondrial regulation of epigenetics and its role in human diseases

Most pathogenic mitochondrial DNA (mtDNA) mutations induce defects in mitochondrial oxidative phosphorylation (OXPHOS). However, phenotypic effects of these mutations show a large degree of variation depending on the tissue affected. These differences are difficult to reconcile with OXPHOS as the sole pathogenic factor suggesting that additional mechanisms contribute to lack of genotype and clinical phenotype correlationship. An increasing number of studies have identified a possible effect on the epigenetic landscape of the nuclear genome as a consequence of mitochondrial dysfunction. In particular, these studies demonstrate reversible or irreversible changes in genomic DNA methylation profiles of the nuclear genome. Here we review how mitochondria damage checkpoint (mitocheckpoint) induces epigenetic changes in the nucleus. Persistent pathogenic mutations in mtDNA may also lead to epigenetic changes causing genomic instability in the nuclear genome. We propose that “mitocheckpoint” mediated epigenetic and genetic changes may play key roles in phenotypic variation related to mitochondrial diseases or host of human diseases in which mitochondrial defect plays a primary role.     

Road-maps and revelations: on the somatic ethics of genetic susceptibility

Understanding genomic susceptibility risk has been represented as key to a new era of personalized medicine, in which “empowered” individuals shape their lives according to a “somatic ethics” of genetic risk management. Based on a comprehensive analysis of websites and other documents produced by key companies within the personal genomics industry, I argue that the rhetoric of empowerment these companies employ constructs an “ideal subject” of personal genomics while also expressing tensions implicit within the idea of a somatic ethics based on genetic susceptibility. Using Kaushik Sunder Rajan's concept of “genomic fetishism,” I show how these tensions arise from the relationship the rhetoric of personal genomics constructs between risk and uncertainty, and relate them to broader tensions within “risk thinking” as a mode of governmentality that extends beyond genomics.     

Extending experimentation: oncology’s fading boundary between research and care

Historians and social scientists view the distinction between research and care as diachronically and synchronically contingent, rather than transcendental, as is often the case in bioethics. Comparing how the notion of total care was used in the 1950s with present-day use of that same term by genomically informed oncology programs, the paper argues that the distinction between research and care needs: to be historicized, by examining its repeated emergence and re-definition, and the shifting relations between these two “ideal-typical” components; and to be problematized, by paying attention to the entities, practices, and institutions that are constitutive of the successive regimens that have punctuated oncology’s development. Shifting to contemporary activities, the paper examines how the recent massive injection of molecular biology and high-throughput genomic technologies in the field of oncology has been accompanied by a reshuffling of the research/care distinction, a process that is leading to new forms of “experimental care”.     

Opening the Gift: Social Inclusion, Professional Codes and Gift-Giving in Long-Term Mental Healthcare

Deinstitutionalisation has not only made the social inclusion of clients a key objective in long-term mental healthcare, it may also affect the role of the care professional. This article investigates whether the social inclusion objective clashes with other long-standing professional values, specifically when clients give gifts to care professionals. In making a typology of gifts, we compare the literature on gift-giving with professional codes for gifts and relate both to the objective of social inclusion of clients. Our typology draws on an analysis of ethnographic fieldwork carried out in 2007/2008 at a Dutch mental healthcare centre. We identify four types of gifts for professionals in long-term mental healthcare, each relating individually to professional codes and the objective of social inclusion of clients. Only the ‘personal gift’ directly supports social inclusion, by fostering personal relationships between professionals and clients. Acceptance of this type of gift is advocated only for long-term care professionals. We suggest that professional codes need to consider this typology of gifts, and we advocate promoting reflexivity as a means of accounting for professional behaviour in deinstitutionalised care settings.     

Weight Bias among Health Professionals Specializing in Obesity

Purpose: To determine the level of anti‐fat bias in health professionals specializing in obesity and identify personal characteristics that correlate with both implicit and explicit bias. Research Methods and Procedures: The Implicit Associations Test (IAT) and a self‐report questionnaire assessing explicit attitudes, personal experiences with obesity, and demographic characteristics was administered to clinicians and researchers attending the opening session of an international obesity conference (N = 389). The IAT was used to assess overall implicit weight bias (associating “obese people” and “thin people” with “good” vs. “bad”) and three ranges of stereotypes: lazy‐motivated, smart‐stupid, and valuable‐worthless. The questionnaire assessed explicit bias on the same dimensions, along with personal and professional experiences with obesity. Results: Health professionals exhibited a significant pro‐thin, anti‐fat implicit bias on the IAT. In addition, the subjects significantly endorsed the implicit stereotypes of lazy, stupid, and worthless using the IAT. Level of bias was associated with several personal characteristics. Characteristics significantly predictive of lower levels of implicit anti‐fat bias include being male, older, having a positive emotional outlook on life, weighing more, having friends who are obese, and indicating an understanding of the experience of obesity. Discussion: Even professionals whose careers emphasize research or the clinical management of obesity show very strong weight bias, indicating pervasive and powerful stigma. Understanding the extent of anti‐fat bias and the personal characteristics associated with it will aid in developing intervention strategies to ameliorate these damaging attitudes.     

Georgy Gause’s shift from ecology and evolutionary biology to antibiotics research: reasons,objectives, circumstances

Georgy Gause (1910–1986) is best known for his contribution to ecology and evolutionary theory. His book “The Struggle for Existence” (1934) inspired generations of ecologists. Yet his scientific interests were diverse, embracing many aspects of the life sciences and medicine. The most notable shift in his research took place in the early 1940s when he began to study antibiotics and discovered Gramicidin S. Superficially, this shift looked like an attempt to switch from purely theoretical to applied research during the years of World War II, but Gause’s decision may also have been seriously affected by the “Great Purge” and the growth of Lysenkoism. Personal factors played a significant role in his career too. In this article, we propose four factors which drove Gause to switch his focus from ecology to antibiotics: the inner logic of his scientific research, Stalin’s science policy and the growth of Lysenkoism, the sociopolitical influence of World War II, and personal relationships. We will also show how all these factors are interdependent to some extent.     

Attitudes toward Animals of Students at Three European Veterinary Medicine Schools in Italy and Spain

The European Veterinary Code of Conduct recognizes the crucial role of veterinarians in improving animal welfare and maintaining its standards. However, several studies have claimed that veterinary students’ attitudes toward animals may worsen as they progress through their academic training. This study aimed to investigate students’ attitudes toward nonhuman animal use in three European veterinary medicine schools (Italy and Spain). For this purpose, 565 veterinary students completed a questionnaire consisting of a range of items grouped into four animal-use categories: “Research,” “Entertainment,” “Utilitarianism,” and “Veterinary Issues.” Items were scored on a 5-point Likert-type scale, with higher scores indicative of higher concern regarding animal welfare. Results showed that the use of animals for “Entertainment” and questions related to “Veterinary Issues” raised the most concern among the veterinary students, while the use of animals for “Research” was of least concern. Moreover, we also examined some potentially confounding factors: age, academic year (first to fifth), gender, previous experience with pets, and university. Female students had a higher concern for animal welfare compared with their male counterparts. Students in their earlier stages of training as veterinarians also exhibited a greater concern for animal welfare compared with those of later academic years. Other factors affecting students’ attitudes toward animal use were the age of the students and the university they were enrolled at. The findings of this study confirm that attitudes toward animal use are not homogeneous and are associated with students’ demographic, educational, and personal characteristics.