The human genome and translational research: how much evidence is enough?

Multiple new genomic diagnostic tests are currently under development. Given the lack of an efficient translational infrastructure, it is not clear how, or whether, robust evidence for their clinical value will be generated.     

Can we assess students' awareness of cultural diversity? A qualitative study of stakeholders' views

CONTEXT: Personal attitudes of doctors towards cultural diversity may influence the delivery of clinical care. Yet whether medical schools should assess a student's cultural awareness and if so, how, has not been specifically debated. OBJECTIVE: To establish the views of key stakeholders in medical education on the assessment of awareness of cultural diversity within the undergraduate curriculum. METHODS: Semi-structured interviews were undertaken, using sampling and snowballing, with 61 stakeholders, including policymakers, teachers of diversity, students, service users and carers. The data were analysed qualitatively using quasi-statistical and template approaches and themes identified. RESULTS: Three main themes emerged. The first was ambivalence over the need to assess students. Most felt students should be assessed to ensure the subject was taken seriously. Some were concerned that assessment might encourage false attitudes. The second theme was uncertainty over the best methodology. Objective structured clinical examinations (OSCEs) were the most favoured method. Significant concern was expressed that this alone was sufficient. The third theme was concern that current assessment methods do not identify students with inappropriate attitudes that are potentially detrimental to patient care. CONCLUSIONS: Assessment of cultural awareness should be attempted but it needs to be multifaceted. The OSCE alone is inadequate. Other tools, such as reflective portfolios, need evaluation.     

Structural adjustment, cultural adjustment?

Over the last two decades, multiple studies have been conducted and many articles published about Structural Adjustment Programmes (SAPs). These studies mainly describe the characteristics of SAPs and analyse their economic consequences as well as their effects upon a variety of sectors: health, education, agriculture and environment. However, very few focus on the sociological and cultural effects of SAPs. Following a summary of SAP's content and characteristics, the paper briefly discusses the historical course of SAPs and the different critiques which have been made. The cultural consequences of SAPs are introduced and are described on four different levels: political, community, familial, and individual. These levels are analysed through examples from the literature and individual testimonies from people in the Southern Hemisphere. The paper concludes that SAPs, alongside economic globalisation processes, are responsible for an acute breakdown of social and cultural structures in societies in the South. It should be a priority, not only to better understand the situation and its determining factors, but also to intervene and act with strategies that support and reinvest in the social and cultural sectors, which is vital in order to allow for individuals and communities in the South to strengthen their autonomy and identify.     

Enterprising or altruistic selves? Making up research subjects in genetics research

The emergence of direct-to-consumer (DTC) personal genomics companies in 2007 was accompanied by considerable media attention and criticism from clinical geneticists and other health professionals, regulators, policy advisors, and ethicists. As well as offering genetic testing services, some firms are also engaged in building their own databases and conducting research with the data obtained from their customers. In this paper, we examine how one of these companies, 23andMe, is creating a certain kind of 'research subject' in opposition to that constituted in conventional forms of disease research. Drawing on debates about neoliberalism, contemporary health discourses and subjectivity, we consider two kinds of subjectivities produced through the discursive and material practices of 23andMe and UK Biobank, namely, 'enterprising' and 'altruistic' selves. We argue that the 23andMe model promotes the idea that curiosity about one's genome on the one hand, and participation in research on the other, are not only compatible but complementary aspects of being an entrepreneurial subject of contemporary health and medicine framed by the technologies of web 2.0.     

Advancing what? Qualitative research,scholarship, and the research imperative

In this keynote address, the author explores the role that scholarship plays in shaping and advancing qualitative research. The focus is on the dynamic relationship that exists between scholarship, qualitative research, qualitative researchers, and the research imperatives that form part of the context in which they operate. Neither scholarship nor qualitative research exists in a contextual vacuum. Changing thoughts and emphases in educational institutions and society at large influence, and are in turn influenced by, understandings of scholarship and research. Boyer's (1990) work on scholarship provides a vehicle for much of the discussion.     

How can PhD research contribute to the global health research agenda?

We propose that PhD and post-doctoral researchers are a strong, untapped resource with the potential to make a real contribution to global health research (GHR). However, we raise some ethical, institutional and funding issues which either discourage new researchers from entering the field or diminish their capacity to contribute. We offer a number of recommendations to Canadian academic and non-academic institutions and funders, and aim to generate discussion among them about how to overcome these constraints. We need changes in the way graduate research is organized and funded, to create opportunities to work collaboratively within established low- and middle-income country (LMIC)/Canadian research partnerships. We urge changes in the way institutions fund, recognize, value and support GHR, so established researchers are encouraged to develop long-term LMIC relationships and mentor new Canadian/LMIC researchers. We ask funders to reconsider additional GHR activities for support, including strategic training initiatives and dissemination of research results. We also encourage the development of alternative institutions that can provide training and mentoring opportunities. GHR per se faces many challenges. If we address those that reduce our potential to contribute, we can become real partners in GHR, working towards equitable global health and solutions to priority health issues.     

Can we research suffering?

Illness troubles us because it is an occasion of suffering, but research on illness has difficulty conceptualizing suffering--and naturally so because suffering is not a concept but a lived reality that resists articulation. Based on the work of Dorothy Smith, the author argues that the rhetoric of social science inadvertently increases suffering because it attempts to organize local experience within extralocal categories. He concludes with suggestions for changing research practices.     

Ethics of qualitative research: are there special issues for health services research?

BACKGROUND: An increasing volume of qualitative research and articles about qualitative methods has been published recently in medical journals. However, compared with the extensive debate in social sciences literature, there has been little consideration in medical journals of the ethical issues surrounding qualitative research. A possible explanation for this lack of discussion is that it is assumed commonly that qualitative research is unlikely to cause significant harm to participants. There are no agreed guidelines for judging the ethics of qualitative research proposals and there is some evidence that medical research ethics committees have difficulty making these judgements. OBJECTIVES: Our aim was to consider the ethical issues which arise when planning and carrying out qualitative research into health and health care, and to offer a framework within which health services researchers can consider these issues. RESULTS: Four potential risks to research participants are discussed: anxiety and distress; exploitation; misrepresentation; and identification of the participant in published papers, by themselves or others. Recommended strategies for reducing the risk of harm include ensuring scientific soundness, organizing follow-up care where appropriate, considering obtaining consent as a process, ensuring confidentiality and taking a reflexive stance towards analysis. CONCLUSIONS: While recognizing the reservations held about strict ethical guidelines for qualitative research, we argue for further debate of these issues so that the health services research community can move towards the adoption of agreed standards of good practice. In addition, we suggest that empirical research is desirable in order to quantify the actual risks to participants in qualitative studies.