To marry or not to marry? : Studying others to know myself

Reflection is integral to ethnographic work; it situates the ethnographer’s insights, beliefs, fears, motivations and confrontations within the larger framework of investigation. But as ethnographers, do we always listen to and act upon our personal reflection? To what extent are we able to go beyond writing reflexively and turn those insights into self-exploration? Using the example of my research on life stories of elderly women in long-term marriages in suburban Mumbai, I explore the relationship between reflexivity and self-exploration. First, I describe my motivation to research this topic. I analyze the contents of reflectional notes from my personal journal and master’s thesis to understand the impact the research had on me. I consider possible explanations for my inability to listen to or accept my own reflections and self-exploration during fieldwork and the consequences on my personal life at the end of the research period

Perceptions of mental illness in a Bangladesh village

In this paper, we discuss the perceptions of people from a Bangladeshi village about what they considered to be 'mental illness'. Observations, informal conversations, interviews, focus group discussions, and illness narratives include the perspectives of both the caregivers and the patients in Kakabo. The villagers provided us with local terms (e.g., paglami), their beliefs about illness causation, treatment, and its effects. Some illnesses were believed to be present from birth and mostly incurable. Supernatural causation and local cure were mentioned for some other categories of illness. There were very few instances when they accessed the existing mental health care in the big city. Widespread abuse of various substances was reported. In general, the participants showed broader acceptance of these conditions, excepting certain forms of substance abuse. We discus these findings in relation to defining their perceptions in terms of explanatory model(s). Our analysis is also concerned with the way people 'embody' their 'illness experience', and how this is made relevant for the process of coping with 'mental illness' in the family. Further investigation, however, is required to clarify some of the questions and ambiguities arising from this small-scale exploratory qualitative study

Challenges of translational research in cutting edge medical technology : a case of first-in-human (FIH) trials of medical applications of nanotechnology

The translation of discoveries in basic science into safe and effective clinical applications is essential for improving health care. Unfortunately, translational research is a long, arduous and resource intense process filled with high levels of uncertainty and renown for resulting in a series of failures before succeeding in its goal. This is particularly true when cutting-edge medical technologies are translated into improved diagnostic tests or better and safer therapeutic options. The aim of this doctoral research project was to describe the challenges involved in the translational research of medical applications of nanotechnology with a particular focus on first-in-human (FIH) trials. This exploratory research project was situated in a larger study and included in-depth qualitative interviews to gain insight into the perspectives of various stakeholders involved in planning, conducting or evaluating FIH trials in nanomedicine. Translational research is a multi-stakeholder enterprise and often requires the negotiation of various conflicting values and goals. FIH trials mark the moment in translational research when an experimental intervention is tested in human beings first time and poses the highest level of uncertainty with regard to the safety and efficacy. In-depth interviews conducted with expert stakeholders based in Europe and North America led to a greater understanding of the various challenges in translational nanomedicine and potential solutions. The key results of this research project indicate a number of challenges in the current practices of translational research. The results are mainly focused on insights obtained from stakeholder interviews and point to issues such as (1) diverse definitions of nanomedicine and its impact on the translational research, (2) financial, ethical and regulatory challenges in the translational research, (3) inconsistent disclosure practices with regard to the ‘nano’ nature of investigational products in patient information sheets and informed consent forms, (4) implications of the current practices of the researchers of including patients with end-stage cancer and no effective treatment options in FIH trials on the scientific value of the early phases of the translational research and (5) factors such as public health emergencies that can accelerate decision making and mobilize resources to initiate FIH trials with investigational products despite significant uncertainty related to their safety and efficacy. To understand all the complexities of translational research in nanomedicine, there is a need to further investigate the role of various regulatory guidelines and to define ‘meaningful’ public engagement in science and drug development. Both these aspects critically hinge upon scientific integrity and the public’s trust in science and regulatory mechanisms. Although these topics were not investigated in this research project, our results clearly indicate the need to explore them further. We conclude that while discussing the regulation of nanotechnology, careful attention must be paid to each application on a case-by-case basis. We argue for the critical examination of current procedures in regulatory assessments rather than creating new and special regulations for nanomedicine. Finally, we believe that the challenges in translational nanomedicine discussed in this project are also applicable to any cutting-edge medical technology.

Perceptions of mental illness in a Bangladesh village

In this paper, we discuss the perceptions of people from a Bangladeshi village about what they considered to be 'mental illness'. Observations, informal conversations, interviews, focus group discussions, and illness narratives include the perspectives of both the caregivers and the patients in Kakabo. The villagers provided us with local terms (e.g., paglami), their beliefs about illness causation, treatment, and its effects. Some illnesses were believed to be present from birth and mostly incurable. Supernatural causation and local cure were mentioned for some other categories of illness. There were very few instances when they accessed the existing mental health care in the big city. Widespread abuse of various substances was reported. In general, the participants showed broader acceptance of these conditions, excepting certain forms of substance abuse. We discus these findings in relation to defining their perceptions in terms of explanatory model(s). Our analysis is also concerned with the way people 'embody' their 'illness experience', and how this is made relevant for the process of coping with 'mental illness' in the family. Further investigation, however, is required to clarify some of the questions and ambiguities arising from this small-scale exploratory qualitative study

Thinking about completed life : euthanasia in the Netherlands from a generativity perspective

In this reflective essay, we explore the concept of generativity and propose it as a more positive interpretation of the experience of ‘completed life’ and its bearing on the wish to die. In 2010, more than 100,000 people in the Netherlands signed a petition requesting an extension of the existing euthanasia legislation. They asked the government to grant euthanasia to older persons who feel tired of life and who regard their lives as complete, in the absence of physical or psychic sickness. Debates about ‘completed life’ euthanasia have continued since then, but the various factions in these debates have been unable to reach consensus or conclusion. In this paper, we analyse the concept of generativity and use this to interpret statements by supporters of ‘completed life’ euthanasia. Next, we disentangle common idioms that people use when they grow older and feel that death is approaching yet still out of reach. The aim of this article is to invite readers to reflect on the wish for ‘completed life’ euthanasia as a meaningful end-of-life reaction

Lost opportunities

Do we need different ethical standards for observational research as compared to experimental study designs like randomised controlled trials (RCT)? Should we allow different standards of care if the research is funded and carried out by local research councils in developing countries without external sponsors? How could we carry out clinical research in resource-constrained, publicly-funded healthcare facilities without compromising the quality of care given to research participants? These questions are discussed against the backdrop of an observational research study undertaken by the national medical research council in a south Asian country in the 1970s to determine which lesions of cervical dysplasia gradually progress to malignant changes

Is failure to raise concerns about misconduct a breach of integrity? Researchers' reflections on reporting misconduct

This article describes and discusses the views of researchers on the significance of raising concerns about scientific misconduct in their work environment and the reasons or circumstances that might deter them from doing so. In this exploratory qualitative research study, we conducted in-depth interviews with 33 researchers working in life sciences and medicine. They represent three seniority levels and five universities across Switzerland. A large majority of respondents in this research study argued that failure to raise concerns about scientific misconduct compromises research integrity. This is an encouraging result demonstrating that researchers try to adhere to high ethical standards. However, further interaction with respondents highlighted that this correct ethical assessment does not lead researchers to take the consequent action of raising concerns. The factors that discourage researchers from raising concerns need to be addressed at the level of research groups, institutions, and by setting a positive precedent which helps them to believe in the system's ability to investigate concerns raised in a timely and professional manner. Training of researchers in research integrity related issues will have limited utility unless it is coupled with the creation of research culture where raising concerns is a standard practice of scientific and research activities

Researchers' interpretations of research integrity: A qualitative study

Despite increasing interest in integrity issues, relatively few studies have examined researchers' own interpretations of integrity. As part of the Perspectives on Research Integrity in Science and Medicine (PRISM) project, we sought to explore how researchers themselves define research integrity. We conducted 33 semi-structured interviews with clinical and laboratory-based researchers from across Switzerland. Data were transcribed and coded using thematic analysis and illustrative quotes were selected. Researchers defined integrity in terms of honesty, transparency, and objectivity, and generally stressed the importance of sticking to the research question and avoiding bias in data interpretation. Some saw research integrity as being synonymous with scientific integrity, but others regarded research integrity as being a subset of the wider domain of scientific integrity. A few participants equated research integrity with mere absence of misconduct, but the majority of participants regarded integrity as being more than this. Researchers regarded truth as the key aspect of integrity, though they expressed this in different ways and with various emphases on honesty, transparency, and objectivity. Integrity goes beyond avoiding misconduct, and scientific integrity has a wider domain than research integrity

How do researchers acquire and develop notions of research integrity? A qualitative study among biomedical researchers in Switzerland

Structured training in research integrity, research ethics and responsible conduct of research is one strategy to reduce research misconduct and strengthen reliability of and trust in scientific evidence. However, how researchers develop their sense of integrity is not fully understood. We examined the factors and circumstances that shape researchers' understanding of research integrity.; This study draws insights from in-depth, semi-structured interviews with 33 researchers in the life sciences and medicine, representing three seniority levels across five research universities in Switzerland.; The results of this study indicate that early education, moral values inculcated by the family and participation in team sports were the earliest influences on notions of honesty, integrity and fairness among researchers. Researchers' personality traits, including degree of ambition and internal moral compass, were perceived as critical in determining the importance they attributed to conducting research with high ethical standards. Positive and negative experiences in early research life also had a significant impact on their views regarding research integrity. Two thirds of the study participants had not received any formal training in research integrity. Their awareness of training opportunities at their institutions was also limited.; Age-appropriate development of honesty and integrity starts as early as primary education. Research integrity training should be offered from the bachelors level and continue throughout the entire professional life of researchers. Although these courses may not imbue researchers with integrity itself, they are essential to improving the research culture, reinforcing integrity norms, and discouraging researchers who lack personal integrity from engaging in research misconduct