Background Inadequate knowledge among health care providers (HCPs) and parents of affected children limits the understanding and utility of secondary genetic findings (SFs) in under-represented populations in genomics research. SFs arise from deep DNA sequencing done for research or diagnostic purposes and may burden patients and their families despite their potential health importance. This study aims to evaluate the perspective of both groups regarding SFs and their choices in the return of results from genetic testing in the context of orofacial (...) clefts.Methods Using an online survey, we evaluated the experiences of 252 HCPs and 197 parents across participating cleft clinics in Ghana and Nigeria toward the return of SFs across several domains.Results Only 1.6% of the HCPs felt they had an expert understanding of when and how to incorporate genomic medicine into practice, while 50.0% agreed that all SFs should be returned to patients. About 95.4% of parents were willing to receive all the information from genetic testing (including SFs), while the majority cited physicians as their primary information source (64%).Conclusions Overall, parents and providers were aware that genetic testing could help in the clinical management of diseases. However, they cited a lack of knowledge about genomic medicine, uncertain clinical utility, and lack of available learning resources as barriers. The knowledge gained from this study will assist with developing guidelines and policies to guide providers on the return of SFs in sub-Saharan Africa and across the continent. (shrink)

The aim of the study was to determine the acceptance and perception of Nigerian patients to medical photography. A self-administered questionnaire was distributed among Nigerian patients attending oral and maxillofacial surgery and plastic surgery clinics of 3 tertiary health institutions. Information requested included patients' opinion about consent process, capturing equipment, distribution and accessibility of medical photographs. The use of non-identifiable medical photographs was more acceptable than identifiable to respondents for all purposes (P = 0.003). Most respondents were favourably disposed to (...) photographs being taken for inclusion in the case note, but opposed to identifiable photographs being used for other purposes most especially in medical websites and medical journals. Female respondents preferred non-identifiable medical photographs to identifiable ones (P = 0.001). Most respondents (78%) indicated that their consent be sought for each of the outline needs for medical photography. Half of the respondents indicated that identifiable photographs may have a negative effect on their persons; and the most commonly mentioned effects were social stigmatization, bad publicity and emotional/psychological effects. Most of the respondents preferred the use of hospital-owned camera to personal camera/personal camera-phone for their medical photographs. Most respondents (67.8%) indicated that they would like to be informed about the use of their photographs on every occasion, and 74% indicated that they would like to be informed of the specific journal in which their medical photographs are to be published. In conclusion, non-identifiable rather than identifiable medical photography is acceptable to most patients in the studied Nigerian environment. The use of personal camera/personal camera-phone should be discouraged as its acceptance by respondents is very low. Judicious use of medical photography is therefore advocated to avoid breach of principle of privacy and confidentiality in medical practice. (shrink)

Dental caries is the main oral health challenge for children in Nigeria. Concern about its negative impact makes screening for caries in children an attractive public health strategy. The ability to detect the preclinical phase of caries, the availability of screening tools with high accuracy, and the possibility of treatment before onset of clinical symptoms with significant cost and health benefits, makes it appropriate for screening. However in Nigeria, the poor availability of highly specific and sensitive screening tools, poor access (...) to oral health care and concerns with pre-screening consent, raise the question of the appropriateness of conducting screening programmes for children. We argue that a number of structural challenges associated with poor uptake of oral health care services need to be addressed before screening for caries can be considered ethically appropriate. These include facilitating access of children to quality oral health care and a systematic national approach to oral health impl... (shrink)

The first annual Alchemy Lecture brings four deep and agile writers from different geographies and disciplines into vibrant conversation on a topic of urgent relevance: humans and borders. Borders, Human Itineraries, and All Our Relation captures and expands those conversations in insightful, passionate ways. Architect, artist, and urban theorist Dele Adeyemo (UK/Nigeria) calls attention to the complexity of Black infrastructures, questioning how "the environments that surround us condition the possibility of our being." Poet Natalie Diaz (US/Mojave/Akimel O'otham) writes: "Like (...) story, migration is the sensual movement of knowledge," and asks, "What is the language we need to live right now?" Philosopher Nadia Yala Kisukidi (France) suggests there is no diasporic life "without the dynamics of fabulation, where we pass down, from generation to generation, the stories of our ancestors who walked barefoot for many months." And cultural theorist Rinaldo Walcott (Canada) asks us to consider inheritances beyond white supremacist logics: "What might it mean to live a life, if we can't risk desiring and working towards utopia?" As each Alchemist considers the legacies of anticolonial struggle, the future of the planet, and the textures of Black and Indigenous life, their essays speak to each other in multiple ways, creating something startling and revelatory: a vision of the world as it is, and as it could be. (shrink)

Background Currently there is increasing recognition of the need for research in developing countries where disease burden is high. Understanding the role of local factors is important for undertaking ethical research in developing countries. We explored factors relating to information and communication during the process of informed consent, and the approach that should be followed for gaining consent. The study was conducted prior to a family-based genetic study among people with podoconiosis (non-filarial elephantiasis) in southern Ethiopia. Methodology/Principal Findings We adapted (...) a method of rapid assessment validated in The Gambia. The methodology was entirely qualitative, involving focus-group discussions and in-depth interviews. Discussions were conducted with podoconiosis patients and non-patients in the community, fieldworkers, researchers, staff of the local non-governmental organisation (NGO) working on prevention and treatment of podoconiosis, and community leaders. We found that the extent of use of everyday language, the degree to which expectations of potential participants were addressed, and the techniques of presentation of information had considerable impact on comprehension of information provided about research. Approaching podoconiosis patients via locally trusted individuals and preceding individual consent with community sensitization were considered the optimal means of communication. Prevailing poverty among podoconiosis patients, the absence of alternative treatment facilities, and participants' trust in the local NGO were identified as potential barriers for obtaining genuine informed consent. Conclusions Researchers should evaluate the effectiveness of consent processes in providing appropriate information in a comprehensible manner and in supporting voluntary decision-making on a study-by-study basis. (shrink)

Rapid advances in high throughput genomic technologies and next generation sequencing are making medical genomic research more readily accessible and affordable, including the sequencing of patient and control whole genomes and exomes in order to elucidate genetic factors underlying disease. Over the next five years, the Human Heredity and Health in Africa (H3Africa) Initiative, funded by the Wellcome Trust (United Kingdom) and the National Institutes of Health (United States of America), will contribute greatly towards sequencing of numerous African samples for (...) biomedical research. (shrink)

This book closely examines our commonly held beliefs about human suffering, and offers unique insights into God's role in why we suffer. Dr. Perri critically examines what it means to be human from a Judeo-Christian perspective, and extrapolates from the work of Carl Gustav Jung showing a deeply complex development of human transcendence in human suffering. On an interpersonal level, Dr. Perri elaborates on the work of Martin Buber and Emanuel Levinas and shows how our suffering can be shared and (...) lessened by our unconditionality and presence for the other. Scriptural passages are quoted from both the Hebrew and New Testament texts, and are used to depict the suffering of humankind as seen in the face of Job. It was this face, according to Perri, that Jesus saw in the faces of those He came to redeem, and that ultimately brought Him to the crucifix of redemption. Dr. Perri challenges Sartre's position that our existence precedes our essence, and draws on the work of Abraham Joshua Heschel and Christian theology in this regard. He further elaborates a neurodevelopmental paradigm that creates essence as the basis of our freedom to choose. This book can be read and studied by both professionals in the helping and healing professions, and lay persons seeking to better understand our suffering, and how to better help those who suffer. Dr. Perri offers specific ways in how to be present for those who suffer, how to read and receive the hidden language of human suffering, and how to use silence as a communication skill. (shrink)

Studies on informed consent to medical research conducted in low or middle-income settings have increased, including empirical investigations of consent to genetic research. We investigated voluntary participation and comprehension of informed consent among women involved in a genetic epidemiological study on breast cancer in an urban setting of Nigeria comparing women in the case and control groups.

BackgroundThe consent process for a genetic study is challenging when the research is conducted in a group stigmatized because of beliefs that the disease is familial. Podoconiosis, also known as 'mossy foot', is an example of such a disease. It is a condition resulting in swelling of the lower legs among people exposed to red clay soil. It is a very stigmatizing problem in endemic areas of Ethiopia because of the widely held opinion that the disease runs in families and (...) is untreatable. The aim of this study was to explore the impact of social stigma on the process of obtaining consent for a study on the genetics of podoconiosis in Southern Ethiopia.MethodsWe adapted a rapid assessment tool validated in The Gambia. The methodology was qualitative involving focus-group discussions (n = 4) and in-depth interviews (n = 25) with community members, fieldworkers, researchers and staff of the Mossy Foot Treatment and Prevention Association (MFTPA) working on prevention and treatment of podoconiosis.ResultsWe found that patients were afraid of participation in a genetic study for fear the study might aggravate stigmatization by publicizing the familial nature of the disease. The MFTPA was also concerned that discussion about the familial nature of podoconiosis would disappoint patients and would threaten the trust they have in the organization. In addition, participants of the rapid assessment stressed that the genetic study should be approved at family level before prospective participants are approached for consent. Based on this feedback, we developed and implemented a consent process involving community consensus and education of fieldworkers, community members and health workers. In addition, we utilized the experience and established trust of the MFTPA to diminish the perceived risk.ConclusionThe study showed that the consent process developed based on issues highlighted in the rapid assessment facilitated recruitment of participants and increased their confidence that the genetic research would not fuel stigma. Therefore, investigators must seek to assess and address risks of research from prospective participants' perspectives. This involves understanding the issues in the society, the culture, community dialogues and developing a consent process that takes all these into consideration. (shrink)

The draft Code of Conduct for Research is an important initiative towards assisting the scientific community in complying with the provisions of the Protection of Personal Information Act 4 of 2013 (POPIA). However, its approach towards cross-border data sharing should be reconsidered to clarify the ambiguities inherent in the legal requirements for the cross-border sharing of health data in the POPIA. These ambiguities include the concept of ‘transfer of information’, the application of adequacy as a legal mechanism for transfer, the (...) nature of consent for cross-border sharing and the scope of the recipient third party. We suggest that the draft Code of Conduct for Research can be improved by: Explaining or defining the concept of ‘transfer of information’ and when it applies to cross-border sharing in research Clarifying the application of adequacy as a legal mechanism for transfer vis-à-vis the other alternatives Expanding on the interpretation and application of consent as a legal mechanism for cross-border transfers Expanding the category of persons who may be recipients of personal information in a third country. (shrink)

Language, like other human traits, could only have evolved during one or more stages of development. We enlist the theoretical framework of human life history to account for certain aspects of linguistic evolution, with special reference to initial phases in the process. It is hypothesized that selection operated at several developmental stages, the earlier ones producing new behaviors that were reinforced by additional, and possibly more powerful, forms of selection during later stages, especially adolescence and early adulthood. Peer commentaries have (...) provided opportunities to explain human life history more comprehensively, and to add details to our account of spoken language. We made no attempt to explain syntax in the target article, but we propose here that selection for “vocal plumage” may have increased our species’ capacity for utterance complexity, a development that would have benefited all levels of language. (shrink)

In this timely book L.W. Sumner addresses these issues within the wider context of palliative care for patients in the dying process.

The genetic modification of pigs as a source of transplantable organs is one of several possible solutions to the chronic organ shortage. This paper describes existing ethical tensions in xenotransplantation (XTx) that argue against pursuing it. Recommendations for lifelong infectious disease surveillance and notification of close contacts of recipients are in tension with the rights of human research subjects. Parental/guardian consent for pediatric xenograft recipients is in tension with a child’s right to an open future. Individual consent to transplant is (...) in tension with public health threats that include zoonotic diseases. XTx amplifies concerns about justice in organ transplantation and could exacerbate existing inequities. The prevention of infectious disease in source animals is in tension with the best practices of animal care and animal welfare, requiring isolation, ethologically inappropriate housing, and invasive reproductive procedures that would severely impact the well-being of intelligent social creatures like pigs. (shrink)

Rationality requires us to respond to apparent normative reasons. Given the independence of appearance and reality, why think that apparent normative reasons necessarily provide real normative reasons? And if they do not, why think that mistakes of rationality are necessarily real mistakes? This paper gives a novel answer to these questions. I argue first that in the moral domain, there are objective duties of respect that we violate whenever we do what appears to violate our first-order duties. The existence of (...) these duties of respect, I argue, ensures that apparent moral reasons are exceptions to the independence of appearance and reality. I then extend these arguments to the domain of overall reason. Just as there are objective duties of respect for moral reasons that explain moral blameworthiness, so there are objective duties of respect for reasons that explain blameworthiness in the court of overall reason. The existence of these duties ensures that apparent reasons are exceptions to the independence of appearance and reality. (shrink)

Bundle theory takes objects to be bundles of properties. Some bundle theorists take objects to be bundles of instantiated universals, and some take objects to be bundles of tropes. Tropes are instances of properties: some take instantiated universals to be tropes, while others deny the existence of universals and take tropes to be ontologically fundamental. Historically, the bundling relation has been taken to be a primitive relation, not analyzable in terms of or ontologically reducible to some other relation, and has (...) been variously characterized as, e.g., “compresence,” “concurrence,” or “consubstantiation.” Bertrand Russell (1940) defends compresence of universals, and Hector-Neri Castañeda (1974) defends consubstantiation of universals. John Bacon (1995) defends concurrent tropes and Keith Campbell (1990) defends compresent tropes. Jonathan Schaffer (2001) bucks this trend, endorsing compresence understood as co-location in spacetime, but this brings with it undesireable consequences such as the impossibility of distinguishing between objects (such as electrons or other microentities) with the same location. Mereological bundle theory improves upon traditional bundle theory by taking the primitive relation of bundling to be the more familiar relation of fusing or composing, such that objects are fusions of properties or fusions of property instances. Hence, mereological bundle theorists endorse a property mereology: a mereology where properties or property instances can be parts of objects. An advantage of the approach derives from the fact that standard mereologies take composition to be primitive or define it using a different primitive mereological notion (such as primitive parthood). Thus, taking the basic primitive of bundle theory to be composition can reduce the need for.. (shrink)

Adequate epistemic justification is best conceived as the appearance, over time, of knowledge to the subject. ‘Appearance’ is intended literally, not as a synonym for belief. It is argued through consideration of examples that this account gets the extension of ‘adequately justified belief’ at least roughly correct. A more theoretical reason is then offered to regard justification as the appearance of knowledge: If we have a knowledge norm for assertion, we do our best to comply with this norm when we (...) express as assertions only beliefs that appear to us to be knowledge. If we are doing our best, there is little point in further sanctions. So a norm of knowledge for assertion would lead to a secondary norm of justified belief as the appearance of knowledge, marking a point at which our assertions may be corrected but should not be blamed. (shrink)

This book is a major work in the history of ethics, and provides the first study of early modern British philosophy in several decades. Professor Darwall discerns two distinct traditions feeding into the moral philosophy of the seventeenth and eighteenth centuries. On the one hand, there is the empirical, naturalist tradition, comprising Hobbes, Locke, Cumberland, Hutcheson, and Hume, which argues that obligation is the practical force that empirical discoveries acquire in the process of deliberation. On the other hand, there is (...) a group including Cudworth, Shaftesbury, Butler, and in some moments Locke, which views obligation as inconceivable without autonomy and which seeks to develop a theory of the will as self-determining. (shrink)

A substantial portion of Adam Smith's discussion of Stoicism in TMS VII is dedicated to the Stoic “principle of suicide,” according to which suicide is sometimes morally required. While scholars agree that Stoicism exercised considerable influence over Smith, no recent work has explored his views on suicide, despite the central role it plays in his treatment of Stoicism. I argue that Smith opposes the principle of suicide on both epistemic and moral grounds, providing an important critique of Stoicism. I also (...) show how Smith departs from other early modern accounts of suicide by offering a notably humane analysis of this tragic act. I conclude by considering what Smith's discussion of Stoicism and suicide tells us about his moral theory, and I forward a reading of Smith as a skeptic. (shrink)