BackgroundThe return of genetics and genomics research results has been a subject of ongoing global debate. Such feedback is ethically desirable to update participants on research findings particularly those deemed clinically significant. Although there is limited literature, debate continues in African on what constitutes appropriate practice regarding the return of results for genetics and genomics research. This study explored perspectives and ethical considerations of Ugandan genomics researchers regarding the return of genetics and genomics research results.MethodsThis was a qualitative study that (...) employed in-depth interviews. Thirty participants were purposively selected based on their expertise as genomics researchers in Uganda. Data were analysed through content analysis along the main themes of the study using a comprehensive thematic matrix, to identify common patterns arising from the narratives. NVivo software 12 was used to support data analysis.ResultsThe return of genetics and genomics research results was generally acceptable to researchers, and some indicated that they had previously returned individual or aggregate results to participants and communities. The main reasons cited for sharing research results with participants included their clinical utility, actionability and overall benefit to society. Ethical considerations for appropriate return of results included a need for effective community engagement, genetic counselling prior to disclosure of the results, adequate informed consent, and proper assessment of the implications of, or consequences of returning of results. However, the approaches to return of results were perceived as unstandardized due to the lack of appropriate regulatory frameworks.ConclusionsThe return of genetic and genomic research results is generally acceptable to researchers despite the lack of appropriate regulatory frameworks. Ethical considerations for return of genetics and genomics research results are highly divergent, hence the need for national ethical guidelines to appropriately regulate the practice. (shrink)

BackgroundIn response to COVID-19 pandemic, the Government of Uganda adopted public health measures to contain its spread in the country. Some of the initial measures included refusal to repatriate citizens studying in China, mandatory institutional quarantine, and social distancing. Despite being a public health emergency, the measures adopted deserve critical appraisal using an ethics and human rights approach. The goal of this paper is to formulate an ethics and human rights criteria for evaluating public health measures and use it to (...) reflect on the ethical propriety of those adopted by the government of Uganda to contain the spread of COVID-19.Main bodyWe begin by illustrating the value of ethics and human rights considerations for public health measures including during emergencies. We then summarize Uganda’s social and economic circumstances and some of the measures adopted to contain the spread of COVID-19. After reviewing some of the ethics and human rights considerations for public health, we reflect upon the ethical propriety of some of Uganda’s responses to COVID-19. We use content analysis to identify the measures adopted by the government of Uganda to contain the spread of COVID-19, the ethics and human rights considerations commonly recommended for public health responses and their importance. Our study found that some of the measures adopted violate ethics and human rights principles. We argue that even though some human rights can sometimes be legitimately derogated and limited to meet public health goals during public health emergencies, measures that infringe on human rights should satisfy certain ethics and human rights criteria. Some of these criteria include being effective, strictly necessary, proportionate to the magnitude of the threat, reasonable in the circumstances, equitable, and least restrictive. We reflect on Uganda’s initial measures to combat the spread of COVID-19 and argue that many of them fell short of these criteria, and potentially limit their effectiveness.ConclusionThe ethical legitimacy of public health measures is valuable in itself and for enhancing effectiveness of the measures. Such legitimacy depends on the extent to which they conform to ethics and human rights principles recommended for public health measures. (shrink)

The unique context of the rural setting provides special challenges to furnishing ethical healthcare to its approximately 62 million inhabitants. Although rural communities are widely diverse, most have the following common features: limited economic resources, shared values, reduced health status, limited availability of and accessibility to healthcare services, overlapping professional–patient relationships and care giver stress. These rural features shape common healthcare ethical issues, including threats to confidentiality, boundary issues, professional–patient relationship and allocation of resources. To date, there exists a limited (...) focus on rural healthcare ethics shown by the scarcity of rural healthcare ethics literature, rural ethics committees, rural focused ethics training and research on rural ethics issues. An interdisciplinary group of rural healthcare ethicists with backgrounds in medicine, nursing and philosophy was convened to explore the need for a rural healthcare ethics agenda. At the meeting, the Coalition for Rural Health Care Ethics agreed to a definition of rural healthcare ethics and a broad-ranging rural ethics agenda with the ultimate goal of enhancing the quality of patient care in rural America. The proposed agenda calls for increasing awareness and understanding of rural healthcare ethics through the development of evidence—informed, rural-attuned research, scholarship and education in collaboration with rural healthcare professionals, healthcare institutions and the diverse rural population. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy and Rhetoric 34.3 (2001) 245-259 [Access article in PDF] Virtue in Aristotle's Rhetoric: A Metaphysical and Ethical Capacity Susan K. Allard-Nelson It has been argued that Aristotle's description of excellence (aretê) as a capacity (dynamis) in Rhetoric 1.9 is inconsistent with his treatment of excellence in Nicomachean Ethics 2.5, where he specifically argues that aretê is not a dynamis, but a hexis (i.e., a state or condition). (...) 1 Certainly, the word that Aristotle uses throughout the Nicomachean Ethics to both describe and categorize aretê is hexis, and he uses this word at Rhetoric 1.6.1362b13, where he says that several of the virtues, and all other such states (kai hai allai hai toiautai hexeis), are excellences of the soul. However, as part of his discussion of the ethical aspects of oratory, Aristotle states that aretê is "a capacity (dynamis) of providing and preserving good things, and a capacity of conferring many great benefits (euergetikê)" (Rh. 1.9.1366a36-1366b1). 2 This discussion is set in language similar to that used to discuss excellence and goodness in Rhetoric 1362b2-4 and 1361a28-30; this suggests that Aristotle intentionally identifies aretê with dynamis in this text, and, to some degree at least, with the dynamis to benefit others. In the former passage, Aristotle claims that "the excellences, too, must be a good thing, for those who possess them are in a good condition, and they are productive of good things and good actions" (Rh. 1.6.1362b2-4). In the latter passage, Aristotle states that honor (timê) can be paid, not only to those who have already done good, but also to those who have the capacity to do good (dynamenos euergetein) in the future. Indeed, in the Rhetoric 1.9.1366b3-7, Aristotle further unites the concepts of excellence, capacity, and beneficence by stating, "If excellence is the capacity of conferring benefits (dynamis euergetikê), then the greatest virtues must be those which are the most useful to others, and, for this reason, justice and courage are the most honored; for the latter is useful to others in war, and the former both in war and in peace" (1366b3-7). [End Page 245]Based on an understanding of this apparent inconsistency in terminology as intentional on Aristotle's part, I intend to argue here that Aristotle's identification of aretê with dynamis in Rhetoric can be understood within the highly specific context of rhetoric as an art as more appropriate, both metaphysically and ethically, than would have been an identification of aretê with hexis. I also intend to argue that, while certain tensions and difficulties are created by the classification of aretê as a dynamis in the Rhetoric and as a hexis in the Nicomachean Ethics, 3 Aristotle can be defended against the charge of inconsistency.To this end, then, I begin by examining the implications of defining rhetoric as an art (technê) that has persuasion (pistis) as its end (telos) and function (ergon). 1. Rhetoric is an art, and, as we know from EN 6.4, art is identical to a state of reasoned capacity to make, and all art is concerned with the coming into being of something that is capable of either being or not being, and whose origin is in the maker (1140a1-23). Art is a rational capacity, or a potency that moves according to, and involves, a rational formula (kai ta men kata logon dynatai kinein kai hai dynameis auton meta logou), and, as such, it is capable of producing contrary effects (Met. 9.5.1047b31-1048a24). For this reason, and to negate the impossibility of contrary effects being produced simultaneously, Aristotle states that a rational capacity involves not only the elements of agent and patient, but also a desire or choice on the part of the agent that moves her 4 to act (Met. 9.5.1048a10). This necessary desire or choice, in fact, explains why an inference in the case of the arts (or of any rational capacity) can be made in one direction... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy and Rhetoric 34.3 (2001) 245-259 [Access article in PDF] Virtue in Aristotle's Rhetoric: A Metaphysical and Ethical Capacity Susan K. Allard-Nelson It has been argued that Aristotle's description of excellence (aretê) as a capacity (dynamis) in Rhetoric 1.9 is inconsistent with his treatment of excellence in Nicomachean Ethics 2.5, where he specifically argues that aretê is not a dynamis, but a hexis (i.e., a state or condition). (...) 1 Certainly, the word that Aristotle uses throughout the Nicomachean Ethics to both describe and categorize aretê is hexis, and he uses this word at Rhetoric 1.6.1362b13, where he says that several of the virtues, and all other such states (kai hai allai hai toiautai hexeis), are excellences of the soul. However, as part of his discussion of the ethical aspects of oratory, Aristotle states that aretê is "a capacity (dynamis) of providing and preserving good things, and a capacity of conferring many great benefits (euergetikê)" (Rh. 1.9.1366a36-1366b1). 2 This discussion is set in language similar to that used to discuss excellence and goodness in Rhetoric 1362b2-4 and 1361a28-30; this suggests that Aristotle intentionally identifies aretê with dynamis in this text, and, to some degree at least, with the dynamis to benefit others. In the former passage, Aristotle claims that "the excellences, too, must be a good thing, for those who possess them are in a good condition, and they are productive of good things and good actions" (Rh. 1.6.1362b2-4). In the latter passage, Aristotle states that honor (timê) can be paid, not only to those who have already done good, but also to those who have the capacity to do good (dynamenos euergetein) in the future. Indeed, in the Rhetoric 1.9.1366b3-7, Aristotle further unites the concepts of excellence, capacity, and beneficence by stating, "If excellence is the capacity of conferring benefits (dynamis euergetikê), then the greatest virtues must be those which are the most useful to others, and, for this reason, justice and courage are the most honored; for the latter is useful to others in war, and the former both in war and in peace" (1366b3-7). [End Page 245]Based on an understanding of this apparent inconsistency in terminology as intentional on Aristotle's part, I intend to argue here that Aristotle's identification of aretê with dynamis in Rhetoric can be understood within the highly specific context of rhetoric as an art as more appropriate, both metaphysically and ethically, than would have been an identification of aretê with hexis. I also intend to argue that, while certain tensions and difficulties are created by the classification of aretê as a dynamis in the Rhetoric and as a hexis in the Nicomachean Ethics, 3 Aristotle can be defended against the charge of inconsistency.To this end, then, I begin by examining the implications of defining rhetoric as an art (technê) that has persuasion (pistis) as its end (telos) and function (ergon). 1. Rhetoric is an art, and, as we know from EN 6.4, art is identical to a state of reasoned capacity to make, and all art is concerned with the coming into being of something that is capable of either being or not being, and whose origin is in the maker (1140a1-23). Art is a rational capacity, or a potency that moves according to, and involves, a rational formula (kai ta men kata logon dynatai kinein kai hai dynameis auton meta logou), and, as such, it is capable of producing contrary effects (Met. 9.5.1047b31-1048a24). For this reason, and to negate the impossibility of contrary effects being produced simultaneously, Aristotle states that a rational capacity involves not only the elements of agent and patient, but also a desire or choice on the part of the agent that moves her 4 to act (Met. 9.5.1048a10). This necessary desire or choice, in fact, explains why an inference in the case of the arts (or of any rational capacity) can be made in one direction... (shrink)

Implicit bias is one of the most successful cases in recent memory of an academic concept being translated into practice. Its use in the National Science Foundation ADVANCE program—which seeks to promote gender equality in STEM careers through institutional transformation—has raised fundamental questions about organizational change. How do advocates translate theories into practice? What makes some concepts more tractable than others? What happens to theories through this translation process? We explore these questions using the ADVANCE program as a case study. (...) Using an inductive, theory-building approach and combination of computational and qualitative methods, we investigate how the concept of implicit bias was translated into practice through the ADVANCE program and identify five key features that made implicit bias useful as a change framework in the academic STEM setting. We find that the concept of implicit bias works programmatically because it is demonstrable, relatable, versatile, actionable, and impartial. While enabling the concept’s diffusion, these characteristics also limit its scope. We reflect on implications for gender theories of organizational change and for practitioners. (shrink)

This article explores gender differences in three varieties of economic activities that supplement regular employment and housework: entrepreneurial moonlighting, self-provisioning, and casual exchanges with the members of other households. Drawing on data gathered through a random survey and interviews conducted with a white, rural, working-class population, gender differences were found in the content of these activities, their location, the time devoted to them, the degree to which they were delineated from other activities, and the opportunities they provided for sociability. These (...) differences are shown to have consequences for the internal gendered dynamics of the household and for the reinforcement of some kinds of male privilege. (shrink)

Like any other part of the world, Africa is not immune to the intermingling of cultures and civilizations, heritages and horizons, the endogenous and the exogenous, knowledge and imagery. The effects of new communication and information technologies, which still remain the privilege of a minority of political and intellectual elites, cannot conceal the far more profound transformations and reconfigurations that characterize its societies and cultures.

The overlap and differences between the parallel regulatory systems for research create ample room for confusion and missteps, as discussed by Barbara Bierer and Mark Barnes in their report in this supplement. In practice, beyond the inherent differences in the two systems of regulations themselves, there are many issues that further complicate the application of these regulations. These include the variation in size of the institutions receiving PHS funding, the increased prevalence of multisite research, the allocation of research conduct and (...) oversight to external organizations, and the variability in assignment of human subject protection roles between the IRB and the institution. (shrink)

Recounts the author's experiences on a remote Alaskan island, revealing how his adoption of the Eskimo Koyukon wisdom has positively affected his life.

There is unanimous agreement regarding the need to ethically conduct research for improving therapy for patients admitted to hospital with acute conditions, including in emergency obstetric care. We present a conceptual analysis of ethical tensions inherent in the informed consent process for randomized clinical trials for emergency obstetric care and suggest ways in which these could be mitigated. A valid consenting process, leading to an informed consent, is a cornerstone of this aspect necessary for preservation and maintenance of respect for (...) autonomy and dignity. In emergency obstetric care research, obtaining informed consent can be problematic, leading to ethical tension between different moral considerations. Potential participants may be vulnerable due to severity of disease, powerlessness or impaired decisional capacity. Time for the consent process is limited, and some interventions have a narrow therapeutic window. These factors create ethical tension in allowing potentially beneficial research while avoiding potential harms and maintaining respect for dignity, human rights, justice and autonomy of the participants. Informed consent in emergency obstetric care in low- and middle-income countries poses numerous ethical challenges. Allowing research on vulnerable populations while maintaining respect for participant dignity and autonomy, protecting participants from potential harms and promoting justice underlie the ethical tensions in the research in emergency obstetric and newborn care. Those involved in research conduct or oversight have a duty of fair inclusion, to avoid denying participants the right to participate and to any potential research benefits. (shrink)

The foundation of bioethics is the dignity of the human person. The concept of personhood developed from Christian Revelation. The marks of personhood include individuality, substantiality, rationality, incommunicability, and relatedness. Relevant issues for bioethics include the reality of personhood, the inseparability of human nature from human personhood, and the import of personhood for the inviolability of every human being. The recent bioethical instruction, Dignitas personae, reasserts that the embryo should be treated as a person and contains a latent philosophical argument (...) for defining the embryo as a person. The struggle to conceptualize personhood is the effort to value every human being as the image and likeness of God, who is ineffably Triune in his Personhood. National Catholic Bioethics Quarterly 9.4 (Winter 2009): 725–736. (shrink)

BackgroundGenetics and genomics research (GGR) is increasingly being conducted around the world; yet, researchers and research oversight entities in many countries have struggled with ethical challenges. A range of ethics and regulatory issues need to be addressed through comprehensive policy frameworks that integrate with local environments. While important efforts have been made to enhance understanding and awareness of ethical dimensions of GGR in Africa, including through the H3Africa initiative, there remains a need for in-depth policy review, at a country-level, to (...) inform and stimulate local policy development and revision on the continent.MethodsTo identify and characterize existing ethics-related guidelines and laws applicable to GGR across much of Africa, we conducted a scoping review of English language policy documents identified through databases, repositories, and web searches. Thirty-six documents were included and coded using a framework that contained a range of themes across five analytical categories: (1) respect, (2) beneficence, (3) justice, (4) independent oversight, and (5) bans and prohibitions. Data analysis software (NVivo 12) was used to organize, code, and tabulate information according to document characteristics and topics. Illustrative examples of policy requirements were selected for inclusion.ResultsDocuments that met inclusion criteria spanned 20 years; published between 1996 and 2018, with the majority (58%) published after 2009. About two-thirds were denoted as “guidelines,” and slightly more than half were non-exclusive to GGR. Very few (six) country-level documents identified were specific to GGR. Requirements related to the principle of “respect” appeared most often across all documents, relative to other principles and processes. The most commonly stated ban was on reproductive cloning. Other prohibitions applied to germline editing, undue inducements in research, sample use for commercial purposes, employee mandatory DNA testing, fetal sex selection, stem cell use, eugenics, and research without public health benefits.ConclusionsEnforceable policies that are indispensable to the ethical conduct and review of GGR are either deficient or missing in many African countries. Existing international, GGR-specific ethics guidelines can be used to inform GGR policy development at a country-level, in conjunction with insight from country specific ethics committees and other local stakeholders. (shrink)

No consensus yet exists on how to handle incidental fnd-ings in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers (...) have an obligation to address the possibility of discovering IFs in their protocol and communications with the IRB, and in their consent forms and communications with research participants. Researchers should establish a pathway for handling IFs and communicate that to the IRB and research participants. We recommend a pathway and categorize IFs into those that must be disclosed to research participants, those that may be disclosed, and those that should not be disclosed. (shrink)

The Monographs produced by the International Agency for Research on Cancer (IARC) apply rigorous procedures for the scientific review and evaluation of carcinogenic hazards by independent experts. The Preamble to the IARC Monographs, which outlines these procedures, was updated in 2019, following recommendations of a 2018 expert Advisory Group. This article presents the key features of the updated Preamble, a major milestone that will enable IARC to take advantage of recent scientific and procedural advances made during the 12 years since (...) the last Preamble amendments. The updated Preamble formalizes important developments already being pioneered in the Monographs Programme. These developments were taken forward in a clarified and strengthened process for identifying, reviewing, evaluating and integrating evidence to identify causes of human cancer. The advancements adopted include strengthening of systematic review methodologies; greater emphasis on mechanistic evidence, based on key characteristics of carcinogens; greater consideration of quality and informativeness in the critical evaluation of epidemiological studies, including their exposure assessment methods; improved harmonization of evaluation criteria for the different evidence streams; and a single-step process of integrating evidence on cancer in humans, cancer in experimental animals and mechanisms for reaching overall evaluations. In all, the updated Preamble underpins a stronger and more transparent method for the identification of carcinogenic hazards, the essential first step in cancer prevention. (shrink)

The process of obtaining informed consent continues to be a contentious issue in clinical and public health research carried out in resource-limited settings. We sought to evaluate this process among human research participants in randomly selected active research studies approved by the School of Medicine Research and Ethics Committee at the College of Health Sciences, Makerere University.