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.

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)

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)

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)

BackgroundHuman biological materials are usually stored for possible future use in research because they preserve valuable biological information, save time and resources, which would have been spent on collection of fresh samples. However, use of these materials may pose ethical challenges such as unauthorized disclosure of genetic information, which can result in dire consequences for individuals or communities including discrimination, stigma, and psychological harm; has biosecurity implications; and loss of control or ownership of samples or data. To understand these problems (...) better, we evaluated the extent to which tuberculosis (TB) clinical research protocols that were used to collect and store biological materials for future use conform to the requirements stated in the Uganda national guidelines for research involving humans as participants.MethodsThis was a retrospective review of TB clinical research projects approved by the Uganda National Council for Science and Technology (UNCST) from 2011 to 2015, to examine whether they fulfilled the requirements for ethical collection and use of human materials. Data were abstracted through review of the project protocols using a template developed based on the informed consent and the Materials Transfer Agreement (MTA) requirements in the national guidelines.ResultsOut of 55 research protocols reviewed, most of the protocols 83.6% had been used to collect the stored samples (sputum, blood and sometimes urine), 28% had a section on specimen collection and 24% mentioned ownership of the biological materials. With respect to review of the consent forms used in the studies that stored materials for future use, only 9% of the protocols had a separate consent form for storage of materials, 4.5% of the consent forms explained the risks, 11.4% explained the purpose of the study while 6.8% mentioned the place of storage for the collected materials.ConclusionMany of the studies reviewed did not meet the requirements for collection and storage of biological materials contained in the national guidelines, which indicates a need to additional training on this topic. (shrink)

ABSTRACT The amount of biomedical research being conducted around the world has greatly expanded over the past 15 years, with particularly large growth occurring in low- and middle-income countries (LMICs). This increased focus on understanding and responding to disease burdens around the world has brought forth a desire to help LMIC institutions enhance their own capacity to conduct scientifically and ethically sound research. In support of these goals the Johns Hopkins-Fogarty African Bioethics Training Program (FABTP) has, for the past six (...) years, partnered with three research institutions in Africa (University of Botswana, Makerere University in Uganda, and the University of Zambia) to support research ethics capacity. Each partnership began with a baseline evaluation of institutional research ethics environments in order to properly tailor capacity strengthening activities and help direct limited institutional resources. Through the course of these partnerships we have learned several lessons regarding the evaluation process and the framework used to complete the assessments (the Octagon Model). We believe that these lessons are generalizable and will be useful for groups conducting such assessments in the future. (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)

Background The globalization of clinical research in the last two decades has led to a significant increase in the volume of clinical research in developing countries. As of 2016, Uganda was the third largest destination for clinical trials in Africa. This requires adequate capacity and systems to facilitate ethical practice. Methods This was a retrospective study involving review of laws, guidelines, policies and records from 1896 to date. Results Modern medicine evolved from 1896 and by the time of Uganda's independence (...) in 1962, a 1500 bed national referral hospital was in place and a fully‐fledged medical school was established at the Makerere University. As the practice of medicine evolved in the country, so did medical research that addressed priority health issues. The growth in modern medicine was not matched with development of research infrastructure and regulatory systems. The first documented regulation of research activities was in 1970 while the first research ethics committee established in 1986 was to facilitate review of research related to the HIV/AIDs pandemic. In 1990 an Act of Parliament was passed to facilitate development and implementation of policies, hence the development of the national guidelines in 1997, training, establishment and accreditation of research ethics committees, conferences and research site monitoring. Conclusion Over the past 120 years, the implementation and structural aspects of research ethics in Uganda have evolved through 70 years of no regulation, followed by 30 years of rudimentary regulation while the last 20 years have shown significant growth in the regulatory system associated with supportive laws, institutionalization of regulatory and training processes. (shrink)

Research Ethics, Volume 18, Issue 3, Page 193-209, July 2022. This study aimed to explore experiences and practices of key research team members in obtaining informed consent for pharmacogenetics research and to identify the approaches used for enhancing understanding during the consenting process. Data collection involved 15 qualitative, in-depth interviews with key researchers who were involved in obtaining informed consent from HIV infected individuals in Uganda for participation in pharmacogenetic clinical trials. The study explored two prominent themes: approaches used to (...) convey information and enhance research participants’ understanding and challenges faced during the consenting process. Several barriers and facilitators for obtaining consent were identified. Innovative and potentially effective consenting strategies were identified in this study that should be studied and independently verified. (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)

The amount of biomedical research being conducted around the world has greatly expanded over the past 15 years, with particularly large growth occurring in low- and middle-income countries. This increased focus on understanding and responding to disease burdens around the world has brought forth a desire to help LMIC institutions enhance their own capacity to conduct scientifically and ethically sound research. In support of these goals the Johns Hopkins-Fogarty African Bioethics Training Program has, for the past six years, partnered with (...) three research institutions in Africa to support research ethics capacity. Each partnership began with a baseline evaluation of institutional research ethics environments in order to properly tailor capacity strengthening activities and help direct limited institutional resources. Through the course of these partnerships we have learned several lessons regarding the evaluation process and the framework used to complete the assessments. We believe that these lessons are generalizable and will be useful for groups conducting such assessments in the future. (shrink)

Background: 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. Methods: Data were collected using semi-structured interviewer-administered questionnaires on clinic days after initial or repeat informed consent procedures for the respective clinical studies (...) had been administered to each study participant. Results: Of the 600 participants interviewed, two thirds (64.2 %, 385/600) were female. Overall mean age of study participants was 37.6 (SD = 7.7) years. Amongst all participants, less than a tenth (5.9 %, 35/598) reported that they were not given enough information before making a decision to participate. A similar proportion (5.7 %, 34/597) reported that they had not signed a consent form prior to making a decision to participate in the study. A third (33.7 %, 201/596) of the participants were not aware that they could, at any time, voluntarily withdraw participation from these studies. Participants in clinical trials were 50 % less likely than those in observational studies [clinical trial vs. observational; (odds ratio, OR = 0.5; 95 % CI: 0.35-0.78)] to perceive that refusal to participate in the parent research project would affect their regular medical care. Conclusions: Most of the participants signed informed consent forms and a vast majority felt that they received enough information before deciding to participate. On the contrary, several were not aware that they could voluntarily withdraw their participation. Participants in observational studies were more likely than those in clinical trials to perceive that refusal to participate in the parent study would affect their regular medical care. (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.

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)

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)

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)

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)

Social networks play a significant role in learning and thus in farmers’ adoption of new agricultural technologies. This study examined the effects of social network factors on information acquisition and adoption of new seed varieties among groundnut farmers in Uganda and Kenya. The data were generated through face-to-face interviews from a random sample of 461 farmers, 232 in Uganda and 229 in Kenya. To assess these effects two alternative econometric models were used: a seemingly unrelated bivariate probit model and a (...) recursive bivariate probit model. The statistical evaluation of the SUBP shows that information acquisition and adoption decisions are interrelated while tests for the RBP do not support this latter model. Therefore, the analysis is based on the results obtained from the SUBP. These results reveal that social network factors, particularly weak ties with external support, partially influence information acquisition, but do not influence adoption. In Uganda, external support, gender, farm size, and geographic location have an impact on information acquisition. In Kenya, external support and geographic location also have an impact on information acquisition. With regard to adoption, gender, household size, and geographic location play the most important roles for Ugandan farmers, while in Kenya information from external sources, education, and farm size affect adoption choice. The study provides insight on the importance of external weak ties in groundnut farming, and a need to understand regional differences along gender lines while developing agricultural strategies. This study further illustrates the importance of farmer participation in applied technology research and the impact of social interactions among farmers and external agents. (shrink)

The Idea of Disability in the Eighteenth Century is a wide-ranging collection of essays that explores philosophy, biography, and texts about and by disabled people living in the eighteenth century. The book, which introduces and affirms the notion that disability studies predates most United States and United Kingdom findings by more than a hundred years, will be of interest to philosophers, historians, sociologists, and literary scholars.

Objective To assess parental permission for a neonate's research participation using the MacArthur competence assessment tool for clinical research (MacCAT-CR), specifically testing the components of understanding, appreciation, reasoning and choice. Study Design Quantitative interviews using study-specific MacCAT-CR tools. Hypothesis Parents of critically ill newborns would produce comparable MacCAT-CR scores to healthy adult controls despite the emotional stress of an infant with critical heart disease or the urgency of surgery. Parents of infants diagnosed prenatally would have higher MacCAT-CR scores than parents (...) of infants diagnosed postnatally. There would be no difference in MacCAT-CR scores between parents with respect to gender or whether they did or did not permit research participation. Participants Parents of neonates undergoing cardiac surgery who had made decisions about research participation before their neonate's surgery. Methods The MacCAT-CR. Results 35 parents (18 mothers; 17 fathers) of 24 neonates completed 55 interviews for one or more of three studies. Total scores: magnetic resonance imaging (mean 36.6, SD 7.71), genetics (mean 38.8, SD 3.44), heart rate variability (mean 37.7, SD 3.30). Parents generally scored higher than published subject populations and were comparable to published control populations with some exceptions. Conclusions The MacCAT-CR can be used to assess parental permission for neonatal research participation. Despite the stress of a critically ill neonate requiring surgery, parents were able to understand study-specific information and make informed decisions to permit their neonate's participation. (shrink)