In June 2002, the University of Minnesota hosted a conference to explore the implications of using genetic technologies and genealog.

BiDil, a heart failure drug for African Americans, emerged five years ago as the first FDA approved drug targeted at a specific racial group. While critical scholarship and the popular media have meticulously detailed the history of BiDil from its inauspicious beginnings as a generic combination drug for the general population to its dramatic resuscitation as a racial medicine, the enthusiastic support shown by some African American interest groups has been too little understood, as has their argument that BiDil was (...) an important response to race-based health disparities. In this essay, we show how the drugmaker, NitroMed, used the support it had solicited from black advocacy groups and community members to market BiDil as a unique “grassroots” pharmaceutical to the African American community. We go on to situate BiDil, which relied on a domestic, U.S.-centered conception of race, within the context of the global nature of both race and health disparities. Ironically, the grassroots angle of the BiDil case ultimately obscured the global crisis in health disparities. Furthermore, we argue that the grassroots model initiated by NitroMed should be taken note of, as it marks a potential avenue for the marketing of other drugs in the future. (shrink)

Since the first phase of the formal effort to sequence the human genome, geneticists, social scientists and other scholars of race and ethnicity have warned that new genetic technologies and knowledge could have negative social effects, from biologizing racial and ethnic categories to the emergence of dangerous forms of genetic discrimination. Early on in the Human Genome Project, population geneticists like Luigi Luca Cavalli-Sforza enthusiastically advocated for the collection of DNA samples from global indigenous populations in order to track the (...) history of human ancestry, migration, and languages, while social scientists like Troy Duster insisted that the new genetics was in danger of ushering in insidious practices of eugenics. The Human Genome Diversity Project's 1991 proposal to archive human genetic variation around the world quickly came under intense scrutiny by indigenous peoples and advocacy groups who worried that such measures could exploit indigenous groups as research populations and even resurrect racist taxonomies from the nineteenth century. (shrink)

The enrolment of children and adolescents in health research requires that attention to be paid to specific assent and consent requirements such as the age range for seeking assent; conditions for parental consent (and waivers); the age group required to provide written assent; content of assent forms; if separate assent and parental consent forms should be used, consent from emancipated young adults; reconsent at the age of adulthood when a waiver of assent requirements may be appropriate and the conditions for (...) waiving assent requirements. There is however very little available information for researchers and ethics committees on how to navigate these different issues. To provide guidance to research initiatives, the SickleInAfrica consortium conducted a thematic analysis of a sample of research ethics guidelines and procedures in African countries, to identify guidance for assent requirements in health research. The thematic analysis revealed that 12 of 24 African countries specified the age group for which assent is required. The minimum age for written assent varied across the countries. Five countries, Algeria, Botswana, Cameroon, Nigeria and The Democratic Republic of Congo require consent from both parents/family council in certain circumstances. Botswana, Nigeria, South Africa and Uganda have specific assent/consent requirements for research with emancipated minors. South Africa and Algeria requires re-consent at onset of adulthood. Five countries (Botswana, Cameroon, Nigeria, South Africa and Tanzania) specified conditions for waiving assent requirements. The CIOMS and the ICH-GCP guidelines had the most comprehensive information on assent requirements compared to other international guidelines. An interactive map with assent requirements for different African countries is provided. The results show a major gap in national regulations for the inclusion of minors in health research. The SickleInAfrica experience in setting up a multi-country SCD registry in Africa highlights the need for developing and harmonising national and international guidelines on assent and consent requirements for research involving minors. Harmonisation of assent requirements will help facilitate collaborative research across countries. (shrink)

Hastings Center Report, Volume 52, Issue S1, Page S83-S88, March‐April 2022.

Sickle cell disease is a debilitating illness that affects quality of life and life expectancy for patients. In Cameroon, it is now possible to opt for termination of an affected pregnancy where the fetus is found to be affected by SCD. Our earlier studies found that, contrary to the views of Cameroonian physicians, a majority of parents with their children suffering from SCD would choose to abort if the fetuses were found to be affected. What have not yet been investigated (...) are the views of people suffering from/living with SCD. We used a quantitative sociological method, with administered structured questionnaires, to study the attitudes of adult patients suffering from SCD on prenatal genetic diagnosis and possible TAP. The majority of the 89 participants were urban dwellers , women , Christian and single , with a secondary/tertiary education . The majority would consider PND for SCD; almost half would reject TAP while 40.9% would consider it. Respondents who rejected TAP claimed mostly ethical reasons while those who found TAP acceptable cited fear of having an affected child and the poor quality of the affected child's health . Cameroonian patients with SCD are generally supportive of PND and a remarkably high number of patients living with SCD reported that they would consider terminating a pregnancy based on their assessment of the future well-being of the child. Research is required to investigate the burden of SCD on families and their quality of life. (shrink)

This article describes challenges of conducting an HIV prevention program involving 40 male and female participants ages 12–18 in Hammanskraal, South Africa, aimed at increasing awareness and knowledge of laws protecting children’s sexual health rights and access to services through a culturally based “study circle” format. Challenges highlighted by the project included Institutional Review Board approval of youth consent procedures, cooperation and coordination with local policymakers, the need to modify presentation materials to youths’ comprehension levels, availability of youth-based sexual health (...) service providers, and cultural ambiguity over parental involvement in youth health care decisions and laws pertaining to sexual relationships among minors. (shrink)

Engaging communities in community-based health research is increasingly being adopted in low- and middle-income countries. The use of community advisory boards is one method of practicing community involvement in health research. To date, few studies provide in-depth accounts of the strategies that CAB members use to practice community engagement. We assessed the perspectives, experiences and practices of the first local CAB in Eswatini, which was implemented as part of the MaxART Early Access to ART for All study. Trained Swazi research (...) assistants conducted two focus group discussions and 13 semi-structured interviews with CAB members who had been part of the MaxART study for at least 2.5 years. Interviews explored CAB composition and recruitment, the activities of CAB members, the mechanisms used to engage with communities and the challenges they faced in their role. The MaxART CAB played an active role in the implementation of the Early Access to Art for All study, and activities mainly focused on: promoting ethical conduct, in particular privacy, consent and confidentiality; communication and education, communicating about the study and educating the community on the benefits of HIV testing and early access to HIV treatment; and liaising between the community and the research team. Strategies for interacting with communities were varied and included attending general community meetings, visiting health facilities and visiting public places such as cattle dipping tanks, buses, bars and churches. Differences in the approach to community engagement between CAB members living in the study areas and those residing outside were identified. The experiences of the first CAB in Eswatini demonstrate that community engagement using CABs is a valuable mechanism for engaging communities in implementation studies. Considerations that could impact CAB functioning include clearly defining the scope of the CAB, addressing issues of CAB independence, the CAB budget, providing emotional support for CAB members, and providing continuous training and capacity building. These issues should be addressed during the early stages of CAB formation in order to optimize functioning. (shrink)

Engaging communities in community-based health research is increasingly being adopted in low- and middle-income countries. The use of community advisory boards is one method of practicing community involvement in health research. To date, few studies provide in-depth accounts of the strategies that CAB members use to practice community engagement. We assessed the perspectives, experiences and practices of the first local CAB in Eswatini, which was implemented as part of the MaxART Early Access to ART for All study. Trained Swazi research (...) assistants conducted two focus group discussions and 13 semi-structured interviews with CAB members who had been part of the MaxART study for at least 2.5 years. Interviews explored CAB composition and recruitment, the activities of CAB members, the mechanisms used to engage with communities and the challenges they faced in their role. The MaxART CAB played an active role in the implementation of the Early Access to Art for All study, and activities mainly focused on: promoting ethical conduct, in particular privacy, consent and confidentiality; communication and education, communicating about the study and educating the community on the benefits of HIV testing and early access to HIV treatment; and liaising between the community and the research team. Strategies for interacting with communities were varied and included attending general community meetings, visiting health facilities and visiting public places such as cattle dipping tanks, buses, bars and churches. Differences in the approach to community engagement between CAB members living in the study areas and those residing outside were identified. The experiences of the first CAB in Eswatini demonstrate that community engagement using CABs is a valuable mechanism for engaging communities in implementation studies. Considerations that could impact CAB functioning include clearly defining the scope of the CAB, addressing issues of CAB independence, the CAB budget, providing emotional support for CAB members, and providing continuous training and capacity building. These issues should be addressed during the early stages of CAB formation in order to optimize functioning. (shrink)

In this ground-breaking work, Deborah Cowen makes the first book-length critical intervention into the field of business logistics. Tracing the social, spatial and political transformations wrought by the ‘logistics revolution’, Cowen argues that logistical systems have blurred the boundaries between production and circulation, civilian and military life, and geopolitics and geo-economics, constructing an architecture of the supply chain animated by both the art of war and the science of business. This review considers the political stakes of Cowen’s argument that logistics (...) has reconfigured capitalist social relations of production, especially in relation to the securitisation of spatial mobility and the restructuring of the labour process. In particular, Cowen’s wager that logistical supply-chains are characterised by their vulnerability – and that attendant possibilities for building solidarity emerge out of movements that disrupt such flows – is interrogated in order to question whether such interruptions effectively produce challenges to value-in-motion, or actually become integral to processes of value production. (shrink)

This study looked for evidence of biases in the allocation and disengagement of attention in dysphoric individuals. Participants studied images for a recognition memory test while their eye fixations were tracked and recorded. Four image types were presented (depression-related, anxiety-related, positive, neutral) in each of two study conditions. For the simultaneous study condition, four images (one of each type) were presented simultaneously for 10 seconds, and the number of fixations and the total fixation time to each image was measured, similar (...) to the procedure used by Eizenman et al. (2003) and Kellough, Beevers, Ellis, and Wells (2008). For the sequential study condition, four images (one of each type) were presented consecutively, each for 4 seconds; to measure disengagement of attention an endogenous cuing procedure was used (Posner, 1980). Dysphoric individuals spent significantly less time attending to positive images than non-dysphoric individuals, but there were no group differences in attention to depression-related images. There was also no evidence of a dysphoria-related bias in initial shifts of attention. With respect to the disengagement of attention, dysphoric individuals were slower to disengage their attention from depression-related images. The recognition memory data showed that dysphoric individuals had poorer memory for emotional images, but there was no evidence of a conventional mood-congruent memory bias. Differences in the attentional and memory biases observed in depressed and dysphoric individuals are discussed. (shrink)

This paper develops a framework for establishing rigour for a discourse analysis of professional transition in midwifery, theorised as a ‘female professional project’. Discourse analysis has gained recognition as a useful approach in nursing and midwifery research. It provides an alternative to those qualitative approaches that propose to reveal a ‘reality’ from the perspective of the individual experience, and that this lived experience can be directly represented in language. There are multiple discourse analytic approaches, and often researchers are not explicit (...) about what type they are employing. Furthermore, to date there are few clear guidelines for what constitutes rigour in a discourse analytic study. Rigour in qualitative research broadly falls into two categories: the replication perspective that argues for the maintenance of criteria of validity and reliability, usually with an underpinning assumption (often unquestioned) that a ‘truth’ can be revealed. The second is the parallel perspective that questions the ontological and epistemological assumptions of the replication perspective and argues for the development of criteria that reflect the assumed questionable nature of truth and reality. Transferring these criteria to a discourse analytic study revealed some problems. A common challenge identified in achieving rigour in discourse analysis is the maintenance of congruity between the epistemological and ontological basis of a piece of research and the actual analysis conducted or reported. A framework is proposed to address these incongruities and includes six elements. As nurses and midwives increasingly employ discourse analysis in their research, attempts to clarify how rigour will be determined are important if the outcomes of such research are to be seriously considered for their implications for theory, policy and practice. (shrink)

The question of how to handle incidental findings has sparked a heated debate among neuroimaging researchers and medical ethicists, a debate whose urgency stems largely from the recent explosion in the number of imaging studies being conducted and in the sheer volume of scans being acquired. Perhaps the point of greatest controversy within this debate is whether the magnetic resonance imaging scans of all research participants should be reviewed in an active search for pathology and, moreover, whether this search should (...) be performed by a radiologist. Resistance to routine readings performed by radiologists, as opposed to selective review of those scans on which investigators have spotted a possible IF, has been fueled in part by the obvious and enormous cost — financial and logistical — of engaging radiologists to read massive numbers of scans. This cost would be especially burdensome, even prohibitive, to investigators who are not affiliated with a medical center, because of their limited access to radiologists and other medical expertise. (shrink)

We weigh the presumed benefts of routinely searching all research scans for incidental fndings against its substantial risks, including false-positive and false-negative fndings, and the possibility of triggering unnecessary, costly evaluations and perhaps harmful treatments. We argue that routinely searching for IFs may not maximize benefts and minimize risks to participants.

Background:Nurses exposed to community health nursing commonly encounter situations that can be morally distressing. However, most research on moral distress has focused on acute care settings and very little research has explored moral distress in a community health nursing setting especially among nursing students.Aim:To explore the moral distress experiences encountered by undergraduate baccalaureate nursing students in community health nursing.Research design:A descriptive qualitative design was employed to explore the community health nursing experiences of the nursing students that led them to have (...) moral distress.Participants and research context:The study included 14 senior nursing students who had their course in Community Health Nursing in their sophomore year and stayed in the partner communities in their junior year for 6 and 3 weeks during their senior year.Ethical considerations:Institutional review board approval was sought prior to the conduct of the study. Self-determination was assured and anonymity and confidentiality were guaranteed to all participants.Findings:Nursing students are vulnerable and likely to experience moral distress when faced with ethical dilemmas. They encounter numerous situations which make them question their own values and ideals and those of that around them. Findings of the study surfaced three central themes which included moral distress emanating from the unprofessional behavior of some healthcare workers, the resulting sense of powerlessness, and the differing values and mindsets of the people they serve in the community.Conclusion:This study provides educators a glimpse of the morally distressing situations that often occurs in the community setting. It suggests the importance of raising awareness and understanding of these situations to assist nursing students to prepare themselves to the “real world,” where the ideals they have will be constantly challenged and tested. (shrink)

As a subject for philosophizing about education, there are few topics as rich and significant as the role of public schools in fostering respect for sexual and religious diversity. The liberal state, it is said, has a clear mission to teach students to respect the rights of others to lead fundamentally different ways of life, and to provide students with the tools needed to make similarly fundamental choices about their own lives. The liberal state must do this, however, without undue (...) or excessive infringement on the rights of children and parents who believe that some common ways of life are, writ large, morally objectionable. This symposium paper features three arguments, each formulated by a different student in education or a related field. The first argues that LGBTQ role models must be provided in schools (through school resources or in person). The second argues that teachers are being placed in a very difficult position when such provision causes controversy with the surrounding community. The third argues that parents must not be given unchecked power over their children’s exposure to LGBTQ role modeling. (shrink)

Introduction -- Quiz -- Perception & mindset -- Creative thinking -- Decision making -- Analyzing arguments -- Mastering logic -- Appendix I: Summary of reasoning tips 1 to 50 -- Appendix II: Fallacious reasoning -- Appendix III: Avoiding improper inferences -- Appendix IV: Analogies -- Appendix V: The ten classic trade-offs -- Appendix VI: Critical reading and comprehension -- Appendix VII: Tips for taking reading tests -- Answers and explanations -- Quiz : answers.

John Dewey provides a philosophy of nature riven with questions of contexted-function, education, ecological balance, and in general an analysis of nature that understands that fixity won’t work, in the pragmatist sense of work, and consequently, that survival necessitates change. In light of the recent flood of evidence showing that epigenetic factors may have a greater role in evolution than previously thought, a re-envisioning of Dewey’s philosophy of nature is warranted. Dewey’s emphasis on the process of the moving parts, rather (...) than the identity of the parts themselves, provides a contrasting view that largely avoids many of the problems of a gene-centric viewpoint and offers an interpretation of Darwin’s evolutionary theory that emphasizes the instrumental factor of experience in a way that is compatible with the findings of epigenetics. (shrink)