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)

Over the course of its first seven editions, Principles of Biomedical Ethics has proved to be, globally, the most widely used, authored work in biomedical ethics. It is unique in being a book in bioethics used in numerous disciplines for purposes of instruction in bioethics. Its framework of moral principles is authoritative for many professional associations and biomedical institutions-for instruction in both clinical ethics and research ethics. It has been widely used in several disciplines for purposes of teaching in the (...) classroom, during conferences, etc. (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)

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)

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)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy, Psychiatry, & Psychology 8.4 (2001) 317-322 [Access article in PDF] On Wolfgang Blankenburg, Common Sense, and Schizophrenia Aaron L. Mishara Introduction In its increasing openness to neuroscience (Cowan, Harter, and Kandel 2000) and other of its neighboring disciplines, mainstream biological psychiatry has allowed psychopathology, philosophy, and philosophical approaches to psychopathology to play an increased role in current research interests. Given this new openness, and the acknowledgment of the (...) severity of one of psychiatry's most debilitating, costly, and intractable disorders, 1 the translation of W. Blankenburg's 1969 article concerning the psychopathology of common sense does not merely serve historical interest. It is an exceptional example of a not well-known trend in German- and French-speaking psychiatry to apply philosophical phenomenology and existentialism to psychopathological research. This trend, which reached a peak in the late 1950s and was strong well into the 1970s, has dwindling, but nevertheless, current representatives in Heidelberg and Zurich and is scattered in a few other places in Europe, Japan, the United States, and South America. The view of the Zeitgeist—which may sound astonishing, even antiquated to contemporary readers—was highly ambitious: Conceptual approaches, such as philosophical ("transcendental") phenomenology, were expected to supply knowledge about the structure of consciousness and its disturbance in various mental disorders.Following the lead of Binswanger and Szilasi, who viewed schizophrenia as an "experiment of nature" that enables us to view underlying processes otherwise hidden to "natural, everyday consciousness," Blankenburg believed that it may be possible to map the formal properties of the psychopathology of schizophrenia—precisely in the loss of common sense—as a disturbance to the basic organization of conscious experience. Any attempt to summarize this rather abstract and complex approach in a brief commentary would be ill advised. In passing, rather, I will remark that such efforts could have profound relevance to the current research of schizophrenia and its underlying neurobiology. This research has gradually acknowledged the importance of taking the patient's subjective experience of the disorder into account (Mishara, Parnas, and Naudin 1998). In this commentary, I will first give an account of the biographical and clinical reasons that led Blankenburg to turn to the problem of common sense and its relevance for schizophrenia. I will then explore what implications [End Page 317] his work may have for more recent findings concerning schizophrenia. Blankenburg's Intellectual Development Born in 1928, W. Blankenburg, the son of a Lufthansa pilot who pioneered transatlantic commercial flights, began his studies in Freiburg im Breisgau in 1947. While at Freiburg, Blankenburg heard lectures in philosophy given by E. Fink (the former assistant to Husserl) and Max Mueller, and in psychology, by R. Heiss and others. After three years, Blankenburg turned to the study of medicine, producing a dissertation in 1956 on an application of Daseinsanalysis (Heidegger and Binswanger) to a case of paranoid schizophrenia. Binswanger wrote the forward to the publication. Between 1956 and 1958, Blankenburg studied internal medicine in Heidelberg with the accomplished phenomenologist of bodily experience (Leibphaenomenologer) and student of V. von Weizsaecker Herbert Pluegge. He spent one semester in Goettingen where he attended lectures by the ontological philosopher Nicolai Hartmann, who provided for Blankenburg a more useful approach to the problem of nature and natural science than Heidegger's primary emphasis on the question of Being. During his Freiburg years, Blankenburg attended small seminars led by Heidegger in the Schwarzwald forest. (Heidegger had been forbidden to teach after the end of World War II.) Blankenburg recalls that the participants would sit on logs in an open field as if to invoke Heidegger's concept of the clearing (Lichtung) of Being. While not entirely sympathetic with Heidegger's philosophy, Blankenburg learned to carefully "listen"—as Heidegger would repeatedly emphasize—to language, not merely poetic or philosophical language, but the language of the patients he would meet in clinical practice.During this time, Blankenburg heard lectures by W. Szilasi, the philosopher-scientist who held Husserl's and Heidegger's chair in the department of philosophy. Szilasi collaborated with the phenomenological psychiatrist, L. Binswanger. Their effort to apply concepts from Husserl's... (shrink)

It is widely agreed among broadly Anselmian theists that God is in some sense the 'delimiter of possibilities.' In other words, the scope of possibility is explained by the manner in which the universe emanates from God. However, existing accounts of God's role here—in terms of freedom, choice, or power—face serious difficulties. The present paper provides a new account of God's role as the delimiter of possibilities in terms of the different manner in which the non-actuality of non-actual states of (...) affairs is explained. Intuitively and metaphorically, we can think of the menu of states of affairs being 'whittled down' in successive stages of a process of divine decision-making, with the different species of impossibility corresponding to when and how the states of affairs are ruled out. I argue that this approach provides genuine contingency while also preserving the Principle of Sufficient Reason. (shrink)

There is a prima facie conflict between the values of love and autonomy. How can we bind ourselves to a person and still enjoy the fruits of self-determination? This chapter argues that the solution to this conflict lies in recognizing that love is the basis of autonomy: one must love a person in order to truly appreciate their autonomy. To make this case, this chapter defends a minimalist account of love, according to which love is an agreeable sensation that is (...) experienced when considering the existence of another person. On this view, the lover does not desire anything from the beloved but works to attend to their presence. Love, then, puts us in a position to appreciate the beloved in their particular way of being. By accepting the presence of the beloved we gain a sense of their autonomy. The roots of this account of love are found in the writings of Damaris Cudworth Masham. This chapter draws on the work of Kieran Setiya, David Velleman, and Kyla Ebels-Duggan to elaborate on and defend Masham’s views. (shrink)

Comment by Aaron L. Mackler on “‘Through Her I Too Shall Bear a Child’: Birth Surrogates in Jewish Law” by Elie Spitz Reply by Elie Kaplan Spitz Research Note by G. Scott Davis.

In lieu of an abstract, here is a brief excerpt of the content:Commentary on “Wilhelm Griesinger”Aaron L. Mishara (bio)Arens situates Wilhelm Griesinger in a historical context with which we are no longer familiar. In doing so, she has performed an important task for contemporary clinicians, philosophers, and historians. We find ourselves working and thinking (both in everyday clinical practice and in the construction of our models of mental disorder) with the same categories that Griesinger struggled to sort out and redefine; (...) we often do so, however, without awareness of their history or lack of permanence. Ackerknecht writes that all the dominant trends in modern psychiatry can be traced back to Griesinger; he states that Griesinger is the “founder of neuropsychiatry,” a “merging of the two disciplines” neurology and psychiatry. Griesinger presents us with a “systematic synthesis of the anatomical, physiological, psychological and clinical points of view” (Ackerknecht 1959, 63). Somewhat contrarily, Karl Jaspers, in his General Psychopathology, groups Griesinger with the great observers and describers of clinical experience rather than among the systematic analyzers (Jaspers 1963, 849–50). Although Griesinger is best known for his identification of mental disorders as a subset of brain diseases, Karl Bonhoeffer, a successor to Griesinger as director of the Charité Clinic in Berlin, cautions that Griesinger “continued to see in psychological causes the most frequent and abundant source of mental disorders” (Bonhoeffer 1911, 53). Kales, Kales, and Vela-Bueno, however, write, “Griesinger was representative of a clinical movement that minimized the value of psychological concepts in the understanding of mental diseases” (Kales, Kales, and Vela-Bueno 1990, 15). Precisely because of his importance, contention surrounds his legacy.If Griesinger is the pioneer of empirical approaches in biological neuropsychiatry (as Ackerknecht and others claim), he is also precursor to philosophical criticisms of their limits. It is not so easy to lump Griesinger to one side of the oppositions with which we think today: Griesinger’s scientific psychiatry (formed on the basis of the newly emergent empirical physiology) was meant to steer between the Scylla of the previously reigning overspeculative romantic medicine and the Charybdis of the antitheoretical and “positivistic” materialism of Magendie. As Arens suggests, even during the same generation of university psychiatry which Griesinger was critical in forming, he was posthumously denounced as belonging to the Hegelian idealists; later, he was proclaimed to be an empiricist. Griesinger’s work contained both idealism and empiricism in a fragile synthesis that soon broke asunder.Hermeneutic theory points out that we inevitably interpret an author, in this case, Griesinger, in terms of the prejudices of our own present context of understanding and our current problems of application to clinical practice (Gadamer 1993). On the one hand, we benefit from the advantage of seeing all that follows Griesinger’s work and are able to “understand the author [End Page 165] better than he understood himself.” We are able to see what he only anticipates but is still not able to explicitly articulate as the unpredicted effects of his work. On the other hand, our interpretations are encumbered by the sedimentations of the views of his successors: his work lies buried under the subsequent interpretations and vicissitudes of a reception with its own agendas, contexts of interpretation, and realms of application. It would be easier if we could simply assign him to one side of our current debates concerning mind/body, individual/culture, and explanation/understanding rather than seeing that our present quandaries in understanding, classifying, and treating mental disorder result precisely from a reading of Griesinger that is not careful enough. It is here that Arens can help us develop our present views further by reviewing their past.Although Griesinger is heralded as the pioneer of an empirical physiological approach which employs a natural scientific concept of mechanism (Ackerknecht, O. Marx, Verwey), Arens situates him in the tradition of Kant and German idealism. It is perhaps this solution of being both philosophical and empirical which seems hard for us, today, to understand. We have come to view these directions as contradictory, to be necessarily in a mutually exclusive relationship. (But that is rather the expression of the present impasse and not the way that Griesinger originally approached these problems.) Arens ambitiously retraces the genealogy of Griesinger’s model... (shrink)

The term fuzzy logic is used in this paper to describe an imprecise logical system, FL, in which the truth-values are fuzzy subsets of the unit interval with linguistic labels such as true, false, not true, very true, quite true, not very true and not very false, etc. The truth-value set, , of FL is assumed to be generated by a context-free grammar, with a semantic rule providing a means of computing the meaning of each linguistic truth-value in as a (...) fuzzy subset of [0, 1].Since is not closed under the operations of negation, conjunction, disjunction and implication, the result of an operation on truth-values in requires, in general, a linguistic approximation by a truth-value in . As a consequence, the truth tables and the rules of inference in fuzzy logic are (i) inexact and (ii) dependent on the meaning associated with the primary truth-value true as well as the modifiers very, quite, more or less, etc. (shrink)

Fabi and Goldberg investigate how funding availability influences the landscape of bioethics as a field, and perpetuates forms of social and epistemic injustice while limitin...

This paper argues that forgiveness is not best understood in terms of waiving a requirement of justice, and, specifically, that forgiveness is distinct from mercy. I question some reasons philosophers have given for distinguishing forgiveness and mercy, but argue that the difference between the two notions can be clearly shown by considering the standard grounds for which they are granted. I argue that while mercy involves leniency in the infliction of punishment that is due in accordance with justice, forgiveness primarily (...) concerns the victim's feelings and attitudes towards the wrongdoer as a person. South African Journal of Philosophy Vol. 27 (1) 2008 pp. 1-9. (shrink)