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)

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)

Paying research participants in developing countries like Uganda raises ethical concerns over potential for undue inducement. This article, based on an exploratory study, reviewed 49 research protocols from a national HIV/AIDS research ethics committee database. Payments mainly adhered to the reimbursement and compensation payment models. Offers made were diverse but basic in order to limit undue inducement. Implications in terms of undue inducement and possible impact on participants and research are discussed. We end by recommending standardization across comparable studies in (...) the interests of promoting high-quality research, altruism, voluntariness, and restraining unfair reimbursement practices in research. (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)

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)

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)

Meaning addresses the fundamental question of human language interaction: what it is to mean, and how we communicate our meanings to others. Experienced textbook writer and eminent researcher Betty J. Birner gives balanced coverage to semantics and pragmatics, emphasizing interactions between the two, and discusses other fields of language study such as syntax, neurology, philosophy of language, and artificial intelligence in terms of their interfaces with linguistic meaning.

This is a book about speech and the silencing of speech; about who gets to speak and who does not; about who is listened to and who is ignored. In this down-to-earth analysis of the democratic principle of freedom of speech, Betty McLellan insists that, if this prized democratic principle is to have any continuing credibility, free speech must be free for all.

Le monde occidental s'interroge aujourd'hui sur la passion de la mort qui pousse de jeunes terroristes au suicide et au crime. Le présent essai traite d'une autre fascination, non moins troublante : celle qui travaille sourdement les grands textes de notre modernité. Après Alexandre Kojève, l'écriture de Georges Bataille, de Maurice Blanchot, de Jacques Derrida ou de Jacques Lacan, laisse transparaître un lyrisme de la destruction, un engouement pour l'abîme, qu'il faut savoir reconnaître sous la rigueur de la pensée. D'où (...) vient cette esthétique du malheur? Quels enjeux recouvre-t-elle? Au fil d'une minutieuse lecture, l'auteur s'attache à dénuder un complexe de valeurs et d'affects qui remontent aux origines symboliques de notre civilisation. On entrevoit peu à peu que cette revendication de la mort pourrait bien n'être que le signe inversé de la grande protestation humaine, de sa soif d'infini et de son désir d'être. Betty Rojtman, née à Paris, a dirigé le département de littérature française à l'université hébraïque de Jérusalem. Elle situe sa recherche au carrefour de la pensée contemporaine et de l'exégèse juive traditionnelle. Parmi ses publications : Feu noir sur feu blanc. Essai sur l'herméneutique juive (1986); Une grave distraction (préface de Paul Ricoeur, 1991) ; Une rencontre improbable (2002) et Moïse, prophète des nostalgies (2007). (shrink)

An investigation of Benjamin’s conception of the subject as fractured via a reading of Benjamin’s use of Freud, this book engages Benjamin’s writing on sovereignty and myth in the Baroque and analyzes these themes in the context of Benjamin’s writing on the 19th century.

While it is widely assumed that greater diversity in corporate governance will enhance a firm’s corporate social performance, this study considers an alternative thesis which relates managerial control to corporate philanthropy. The study empirically evaluates both board diversity and managerial control of the board as possible predictors of corporate philanthropy. The demonstration of a positive relationship between managerial control and corporate philanthropy contributes to our understanding that corporate social performance results from a complex set of economic and social motives. Possible (...) future research and managerial implications are discussed. (shrink)

Résumé Et toi, quel est ton genre? Les Betty, intellectuelles précaires, partageant un désir militant, critiques tant vis-à-vis des groupes féministes historiques, que des pratiques politiques au sein du mouvement des mouvements, nous racontent leur création d’un espace, le "sexishock" au cœur même d’un centre social à Bologne.

While it is widely assumed that greater diversity in corporate governance will enhance a firm’s corporate social performance, this study considers an alternative thesis which relates managerial control to corporate philanthropy. The study empirically evaluates both board diversity and managerial control of the board as possible predictors of corporate philanthropy. The demonstration of a positive relationship between managerial control and corporate philanthropy contributes to our understanding that corporate social performance results from a complex set of economic and social motives. Possible (...) future research and managerial implications are discussed. (shrink)

The common discourse on intellectual property rights rests mainly on utilitarian ground, with implications on the question of justice as well as moral significance. It runs like this: Intellectual property rights are to reward the originators for his/her intellectual labour mainly in monetary terms, thereby providing incentives for originators to engage in future innovative labouring. Without such incentives, few, if not none, will engage in creative activities and the whole human community will, thereby, suffer because of reduced inventions. However, such (...) utilitarian argument on piracy as de-motivation may not be necessarily justified. In fact, intellectual property arrangement is one among different institutions concerning how the society may handle new ideas and creative works. In reality, private ownership over one's intellectual product is merely a modern western concept that is being ' advertised' as being normative, which, by itself, is highly debatable. Alarming still, such normative argument assumes both justness and moral dimensions. This article will analyse whether such argument is philosophically sound. (shrink)

Women most fully experience the consequences of human reproductive technologies. Men who convene to evaluate such technologies discuss "them": the women who must accept, avoid, or even resist these technologies; the women who consume technologies they did not devise; the women who are the objects of policies made by men. So often the input of women is neither sought nor listened to. The privileged insights and perspectives that women bring to the consideration of technologies in human reproduction are the subject (...) of these volumes, which constitute the revised and edited record of a Workshop on "Ethical Issues in Human Reproduction Technology: Analysis by Women" (EIRTAW), held in June, 1979, at Hampshire College in Amherst, Massachusetts. Some 80 members of the workshop, 90 percent of them women (from 24 states), represented diverse occupations and personal histories, different races and classes, varied political commitments. They included doctors, nurses, and scientists, lay midwives, consumer advocates, historians, and sociologists, lawyers, policy analysts, and ethicists. Each session, however, made plain that ethics is an everyday concern for women in general, as well as an academic profession for some. (shrink)

Amongst the multiple key philosophers who have addressed critical issues pertaining to music education since the mid-1900s, Bennett Reimer was one voice that began a systematic examination of the nature and value of music and music education as a foundation for a philosophy of music education. With the musical experience at the center of his philosophy, Reimer sought to explain how music articulates feeling, a core of who we are as human beings. Over the sixty years of writing, Reimer’s thinking (...) continued to be influenced by other disciplines including the literature on creative thinking and cognitive neuroscience. The impact of his writing on the field is multifarious, including philosophy, advocacy, curriculum, and the role of music in school-based programs. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:The Art of Teaching MusicBetty Anne YounkerEstelle R. Jorgensen, The Art of Teaching Music(Bloomington, IN: Indiana University Press, 2008)I have had the pleasure of reading the book manuscript, The Art of Teaching Music, by Estelle Jorgensen. The content explores a variety of ideas that are covered in the myriad of courses experienced by undergraduate students and introduces new ones that are critical to the development of musicians and (...) prospective teachers. Some of these ideas might be alluded to or briefly discussed in methods classes, but not at the level of thoughtful detail as they are entertained and examined in the book. This level of depth would require students and teachers to discuss, dialogue, debate, and reflect over time within and across semesters and courses. I dare to suggest that some of the ideas might not be brought to students’ attention at all throughout the undergraduate experience, which is of a concern and suggests an even greater need for such a book.My overall impression of the book is that the content and the depth of writing would serve the undergraduate students throughout their undergraduate experience and the graduate population for similar and yet different reasons. In terms of the undergraduates, there are parts of the book that would be relevant during their first year in a foundations class, second year in technique classes, third year in methods (for lack of a better word) classes, and student teaching [End Page 109] seminar experiences as they prepare to enter the profession. Utilizing a book across an undergraduate’s experience could generate interesting conversation amongst faculty members as discussions about why, how, what, and when parts of the book would be relevant would need to evolve. Some chapters could be revisited while others visited for the first time at differing places and spaces across the four years. I cannot think of another book that could be utilized in this way and thus serve the undergraduate student throughout her four-year experience and this prospect I find exciting.The book is organized around fourteen chapters, all of which are followed by an afterward. The flow of the chapters invites the reader to examine aspects of becoming and being a music educator at various levels of growth and understanding.The first chapter is titled “Teacher” and requires the reader to think at broader and deeper levels when discussing the notions of role and identity, self-awareness, motivation to enter the profession, and reflective practice. While reading the text, I imagined conversations that would include a comparative analysis of students’ experiences, which could in turn provide larger contexts for the topics. Such a discussion is necessary when examining aspects of being and becoming a teacher in various contexts. The notion of situatedness is highlighted when individual cases are heard and examined and compared across other cases, carefully noting what might or might not be comparable and taking that bit of analysis into consideration. Having such discussions across the four years of undergraduate life allows students to re-visit what was and is, and to speculate about what is to come. Such reflection can be just as fruitful at the graduate level. Students enter graduate school with a variety of teaching experiences and time is needed to reflect on the transition from being a teacher to being a student again. Realization of the continuum on which they travel between learner and teacher becomes apparent in that the place on the continuum shifts regardless of their present position; that is, as a student or teacher. For doctoral students, this reflection is rich as they begin to engage with undergraduate students and forge a new path as budding teachers of teachers and researchers and continue to be musicians.Chapter Two took me to the writings of Dewey1 particularly as I read about a student-centered focus and the experience-based approach. So much of our profession has been driven by content and theories that the student has been removed from the center of the focus and thought of as peripheral. I welcome the idea of placing the students at the center of our thinking and conversations. These ideas have been articulated in... (shrink)

This article asserts that European and North American feminisms are colonial discursive elaborations that defined what it was to be a woman and a feminist. The categories of gender and patriarchy established both what the subordination of women was as well as the possibilities for their emancipation. They're colonial discourses in the sense that they have construed women of the third world, or of the global South, as “other.” The specific case examined in this article questions the Euro-US-centric feminist construction (...) of women and Afro-descendant feminists. In resignifying the categories of analysis proposed by feminism, such as gender and patriarchy, Afro-descendant feminists assert themselves as diverse Black women who build proposals subverting the social order that oppresses them, without needing to resort to feminism's central categories. Women belonging to ethnic communities elaborate a new type of feminism constructed in relation to the community's collective actions in vindicating their rights. Finally, Black or Afro-Colombian women, based on the legacy of their maroon or runaway slave ancestors, construct feminism otherwise, challenging universalist claims by Eurocentric and Andean-centric feminism, transforming and enriching it. (shrink)

This study asked managers with different educational backgrounds and experience from a variety of industries of a variety of sizes representing both genders and various predominant managerial functions at different levels to “describe the skills they think are necessary to perform their jobs effectively”. In particular, they were asked to rank 178 behavioral skills presented under 22 different categories that described different aspects of management. Data were then examined first to determine the importance of ethics or integrity overall in the (...) group of managerial activities and then to explore how specific ethical activities of managers differ across various managerial and organizational characteristics. Findings indicate that ethics is still considered one of the least important skills necessary in managers’ daily work. However, once specific ethical activities are analyzed separately, significant differences are found across characteristics of managers, as well as those of the organizations at which they work. (shrink)

Betty Powell; XII*—Descartes' Machines, Proceedings of the Aristotelian Society, Volume 71, Issue 1, 1 June 1971, Pages 209–222, https://doi.org/10.1093/aristot.

Betty Powell; XII*—Descartes' Machines, Proceedings of the Aristotelian Society, Volume 71, Issue 1, 1 June 1971, Pages 209–222, https://doi.org/10.1093/aristot.