Many ethical concerns surrounding human genetics studies remain unresolved. We report here the situation in Cameroon.Objectives: To describe the profile of human genetic studies that used Cameroonian DNA samples, with specific focus on i) the research centres that were involved, ii) authorship, iii) population studied, iv) research topics and v) ethics disclosure, with the aim of raising ethical issues that emerged from these studies.Method: Bibliometric Studies; we conducted a PubMed-based systematic review of all (...) the studies on human genetics that used Cameroonian DNA samples from 1989 to 2009.Results and Discussion: Fifty articles were identified, involving predominantly research centres from Europe (64%) and America (32%). Only 7 (14%) Cameroonian institutions and 14 (28%) Cameroonian authors were associated with these publications.At least 52% of publications were devoted to population genetics (variation/migration patterns) amongst 30 Cameroonian ethnic groups. Very few studies concerned public health related genetic issues and only 5 (10%) references were found for hemoglobinopathies like sickle cell anaemia. Almost all DNA samples are ‘banked’ outside of the African continent.Capacity building, rights to the genetic information and benefits to the individuals, communities and populations who contribute to these studies are addressed.Conclusions: 1) Our data suggests the need for a wider debate towards building capacity and addressing ethical issues related to human genomic research in sub-Saharan Africa and specifically in Cameroon; 2) National ethical guidelines and regulations concerning the collection, use and storage of human DNA are urgently needed in Cameroon. (shrink)

During the past 20 years, the importance of human genetic information has exploded. Whether sought for medical treatment, disease prediction studies, cultural studies, or the general study of human origins, human genetic information is now viewed as crucial for scientific research and general attempts at human understanding.With the importance of genetic information have come bitter battles over its control. The demonstrated power of human genetic information has moved the issue of its “ownership” from (...) the realm of musty academic musings to protracted political and legal battles among “source” individuals, researchers, commercial concerns, government agencies, and others. Whether collected through targeted scientific studies, “discarded” biological tissue, initial charitable bequest, or other means, genetic information and the biological materials in which it is contained have become the subject of protracted legal battles for control and intense social and ethical controversy. (shrink)

In this essay, the author focuses on an underlying theoretical issue which she believes seriously affects our collective response to the idea of group rights in the genetic-control context. That issue is to what extent are our responses to claims of group rights hampered by our bringing to the table a model which is structured to acknowledge only individual concerns? Put another way, to what extent are our objections to group rights in this context a product of our inability to (...) imagine the idea of group rights, rather than the product of truly substantive concerns? (shrink)

This essay analyzes one of Germany's former premier research institutions for biomedical research, the Kaiser Wilhelm Institute for Anthropology, Human Heredity and Eugenics (KWIA) as a test case for the way in which politics and human heredity served as resources for each other during the Third Reich. Examining the KWIA from this perspective brings us a step closer to answering the questions at the heart of most recent scholarship concerning the biomedical community under the swastika: (1) How (...) do we explain why the vast majority of German human geneticists and eugenicists were willing to work for the National Socialist state and, at the very least, legitimized its exterminationist racial policy; and (2) what accounts for at least some of Germany's most renowned medically trained professionals' involvement in forms of morally compromised science that wholly transcend the bounds of normal scientific practice? Although a complete answer to this question must await an examination of other German biological research centers, the present study suggests that during the Nazi period the symbiotic relationship between human genetics and politics served to radicalize both. The dynamic between the science of human heredity and Nazi politics changed the research practice of some of the biomedical sciences housed at the KWIA. It also simultaneously made it easier for the Nazi state to carry out its barbaric racial program leading, finally, to the extermination of millions of so-called racial undesirables. (shrink)

The current SARS-CoV-2 pandemic has killed thousands across the world. SARS-CoV-2 is the latest but surely not the last such global pandemic we will face. The biomedical response to such pandemics includes treatment, vaccination, and so on. In this paper, though, we argue that it is time to consider an additional strategy: the somatic enhancement of human immunity. We argue for this approach and consider bioethics objections we believe can be overcome.

This article explores human genetic diversity research east of what was the iron curtain. It follows the technique of “genogeographic mapping” back to its early Soviet origins and up to the post-Soviet era. Bringing together the history of genogeographic mapping and genealogies of “nationality” and “race” in the USSR, I discuss how populations and belonging were enacted in late Soviet biological anthropology and human genetics. While genogeography had originally been developed within the early Soviet livestock economy, anthropologists, (...) public health scientists, and medical geneticists reanimated the technique in the late 1960s after the end of the Lysenko era and its ban on classical genetics. In the 1970s, population geneticists pursued a project to compile all genetic data on the USSR population, resulting in a “genogeographic atlas,” consisting of series of tables as well as maps projecting genetic markers onto geographic grids. Following the post-Soviet trajectories of these maps, I examine the ways in which human genetic diversity studies realign with renegotiations of difference in today’s Russian Federation. The exploration of the Soviet case of human genetic diversity research contributes to our understanding of the varied ways in which racializing discourses were entangled in the project of modernization. (shrink)

Italian Life sciences in post-WWII faced important challenges: the reconstruction of a scientific panorama suffering heavily after two decades of Fascism and the damages of war. Modernization was not only a matter of recreating a favorable environment for research, by modernizing Italian biomedical institutions and connecting the Italian scientists with the new ideas coming from abroad. The introduction of new genetics required a new array of concepts and instruments, but also, the ability to connect to international networks and to (...) become active members of a broader scientific community. Because of the several socio-cultural issues involved (eugenics, racism, religion, politics), human genetics is a good case study in order to analyze how Italian life sciences managed the transition towards a new research system, and the influences Italian human geneticists received. The paper focuses primarily on the development of the early career of Luigi Luca Cavalli-Sforza, probably the most prominent scientist in post-WWII human genetics in Italy, and his friend and colleague Ruggero Ceppellini. In following their path, a healthy mix of local traditions and international stimuli emerges, allowing for the establishment—within and beyond national borders—of the discipline. (shrink)

Scientific anomalies are observations and facts that contradict current scientific theories and they are instrumental in scientific theory change. Philosophers of science have approached scientific theory change from different perspectives as Darden (Theory change in science: Strategies from Mendelian genetics, 1991) observes: Lakatos (In: Lakatos, Musgrave (eds) Criticism and the growth of knowledge, 1970) approaches it as a progressive “research programmes” consisting of incremental improvements (“monster barring” in Lakatos, Proofs and refutations: The logic of mathematical discovery, 1976), Kuhn (The (...) structure of scientific revolutions, 1996) observes that changes in “paradigms” are instigated by a crisis from some anomaly, and Hanson (In: Feigl, Maxwell (eds) Current issues in the philosophy of science, 1961) proposes that discovery does not begin with hypothesis but with some “problematic phenomena requiring explanation”. Even though anomalies are important in all of these approaches to scientific theory change, there have been only few investigations into the specific role anomalies play in scientific theory change. Furthermore, much of these approaches focus on the theories themselves and not on how the scientists and their experiments bring about scientific change (Gooding, Experiment and the making of meaning: Human agency in scientific observation and experiment, 1990). To address these issues, this paper approaches scientific anomaly resolution from a meaning construction point of view. Conceptual integration theory (Fauconnier and Turner, Cogn Sci 22:133–187, 1996; The way we think: Conceptual blending and mind’s hidden complexities, 2002) from cognitive linguistics describes how one constructs meaning from various stimuli, such as text and diagrams, through conceptual integration or blending. The conceptual integration networks that describe the conceptual integration process characterize cognition that occurs unconsciously during meaning construction. These same networks are used to describe some of the cognition while resolving an anomaly in molecular genetics called RNA interference (RNAi) in a case study. The RNAi case study is a cognitive-historical reconstruction (Nersessian, In: Giere (ed) Cognitive models of science, 1992) that reconstructs how the RNAi anomaly was resolved. This reconstruction traces four relevant molecular genetics publications in describing the cognition necessary in accounting for how RNAi was resolved through strategies (Darden 1991), abductive reasoning (Peirce, In: Hartshorne, Weiss (eds) Collected papers, 1958), and experimental reasoning (Gooding 1990). The results of the case study show that experiments play a crucial role in formulating an explanation of the RNAi anomaly and the integration networks describe the experiments’ role. Furthermore, these results suggest that RNAi anomaly resolution is embodied. It is embodied in a sense that cognition described in the cognitive-historical reconstruction is experientially based. (shrink)

The Benefits and Potential Harms of Genetic Testing for Huntington's Disease: A Case Study Content Type Journal Article Pages 14-19 Authors Kathryn Edge, BSC, Rheumatic Diseases Centre, CSB, Hope Hospital, The University of Manchester, Stott Lane, Salford M6 8HD, England Journal Human Reproduction & Genetic Ethics Online ISSN 2043-0469 Print ISSN 1028-7825 Journal Volume Volume 14 Journal Issue Volume 14, Number 2 / 2008.

U.S. approaches to oversight of research and technological products have developed over time in an effort to ensure safety to humans, animals, and the environment and to control use in a social context. In modern times, regulatory and oversight tools have evolved to include diverse approaches such as performance standards, tradable allowances, consultations between government and industry, and pre-market safety and efficacy reviews. The decision whether to impose an oversight system, the oversight elements, the level of oversight, the choice of (...) approach, and its execution can profoundly affect technological development, individual and collective interests, and public confidence in technological products. Oversight is conducted by a range of institutions with various capabilities, cultures, and motives. Avenues for disputing oversight decisions are also important, and some argue that the U.S. operates in an adversarial regulatory culture in which Congress, the media, and stakeholders regularly contest the decisions of federal agencies. (shrink)

Progressive supranuclear palsy is a movement disorder with prominent tau neuropathology. Brain diseases with abnormal tau deposits are called tauopathies, the most common of which is Alzheimer's disease. Environmental causes of tauopathies include repetitive head trauma associated with some sports. To identify common genetic variation contributing to risk for tauopathies, we carried out a genome-wide association study of 1,114 individuals with PSP and 3,247 controls followed by a second stage in which we genotyped 1,051 cases and 3,560 controls for the (...) stage 1 SNPs that yielded P ≤ 10-3. We found significant previously unidentified signals associated with PSP risk at STX6, EIF2AK3 and MOBP. We confirmed two independent variants in MAPT affecting risk for PSP, one of which influences MAPT brain expression. The genes implicated encode proteins for vesicle-membrane fusion at the Golgi-endosomal interface, for the endoplasmic reticulum unfolded protein response and for a myelin structural component. © 2011 Nature America, Inc. All rights reserved. (shrink)

Case Studies in Biomedical Ethics Content Type Journal Article Category Book Review Pages 239-242 DOI 10.1558/hrge.v17i2.239 Authors Emily Beckwith Journal Human Reproduction & Genetic Ethics Online ISSN 2043-0469 Print ISSN 1028-7825 Journal Volume Volume 17 Journal Issue Volume 17, Number 2 / 2011.

ArgumentThis paper analyzes the research strategies of three different cases in the study of human genetics in Mexico – the work of Rubén Lisker in the 1960s, INMEGEN's mapping of Mexican genomic diversity between 2004 and 2009, and the analysis of Native American variation by Andrés Moreno and his colleagues in contemporary research. We make a distinction between an approach that incorporates multiple disciplinary resources into sampling design and interpretation (unpacking), from one that privileges pragmatic considerations over more (...) robust multidisciplinary analysis (flattening). These choices have consequences for social, demographic, and biomedical practices, and also for accounts of genetic variation in human populations. While the former strategyunpacksfine-grained genetic variation – favoring precision and realism, the latter tends toflattenindividual differences and historical depth in lieu of generalization. (shrink)

Every pharmacist, aware or not, is constantly making ethical choices. Sometimes these choices are dramatic, life-and-death decisions, but often they will be more subtle, less conspicuous choices that are nonetheless important. Assisted suicide, conscientious refusal, pain management, equitable and efficacious distribution of drug resources within institutions and managed care plans, confidentiality, and alternative and non-traditional therapies are among the issues that are of unique concern to pharmacists. One way of seeing the implications of such issues and the moral choices they (...) pose is to look at the experiences of practitioners and the kinds of choices they have had to make in situations typically faced by pharmacists. This book is a collection of those situations based on the real experiences of practicing pharmacists. The use of case studies in health care ethics is not new, but in pharmacy it is. This text is an important teaching tool that will help pharmacy students and pharmacists address the increasing number of ethical problems arising in their profession. It is not merely a compilation of cases, but rather is organized for the systematic study of applied ethics. Part I shows how to distinguish ethical problems from other kinds of evaluative judgments and examines the sources of values in pharmacy, posing basic questions about the meaning and justification of ethical claims. Part II explores the basic principles of ethics as they have an impact on pharmacy. Specific cases from clinical settings present in a systematic way the various questions raised by each of the major ethical principles -- benefiting the patient, distributing resources justly, respecting autonomy, dealing honestly with patients, keeping promises of confidentiality, and avoiding harm. Part II examines some of the special problems of contemporary pharmacy such as the linkages between pharmaceutical care and professional practice, human experimentation, reproductive issues, genetic technology, death and dying, and mental health. (shrink)

We track and analyze the re-situation of scientific knowledge in the field of human population genomics ancestry studies. We understand re-situation as a process of accommodating the direct or indirect transfer of objects of knowledge from one site/situation to other sites/situations. Our take on the concept borrows from Mary S. Morgan’s work on facts traveling while expanding it to include other objects of knowledge such as models, data, software, findings, and visualizations. We structure a specific case study (...) by tracking the re-situation of these objects between three research projects studying human population diversity reported in three articles in Science, Genome Research and PLoS Genetics between 2002 and 2005. We characterize these three engagements as a unit of analysis, a “skirmish,” in order to compare: the divergence of interests in how life-scientists answer similar research questions and to track the challenging transformation of workflows in research laboratories as these scientific objects are re-situated individually or in bundles. Our analysis of the case study shows that an accurate understanding of re-situation requires tracking the whole bundle of objects in a project because they interact in particular key ways. The absence or dismissal of these interactions opens the door to unforeseen trade-offs, misunderstandings and misrepresentations about research design and workflow and what these say about the questions asked and the findings produced. (shrink)

We are living in an unprecedented era of biomedical revolution. Medicine is remaking humans, and controversy surrounds such topics as abortion, artificial organs, brain circuitry, eugenics, euthanasia, and gene therapy. At the same time, medical advances are posing complex ethical problems for both patients and professionals. The most comprehensive and up-to-date collection of its kind, Case Studies in Biomedical Ethics: Decision-Making, Principles, and Cases explores fundamental ethical questions arising from real situations faced by health professionals, patients, and others. (...) Featuring a wide range of more than 100 case studies drawn from current events, court cases, and physicians' experiences, the book is divided into three parts. Part I presents a basic framework for ethical decision-making in healthcare, covering such issues as separating evaluative questions from questions of fact; distinguishing between ethical and nonethical evaluations; and identifying the source of ethical judgments. Expanding upon this framework, Part II explains the ethical principles: beneficence and nonmaleficence, justice, respect for autonomy, veracity, fidelity, and avoidance of killing. Parts I and II provide students with the background to analyze the ethical dilemmas presented in Part III, which features cases on a broad spectrum of issues including abortion, genetics, mental health, confidentiality, health insurance, experimentation on humans, the right to refuse treatment, and death and dying. Each case is accompanied by the authors' commentary, which guides students in considering the issues. Ideal for undergraduate and graduate courses in biomedical ethics, bioethics, and medical ethics, Case Studies in Biomedical Ethics incorporates opening text boxes in each chapter that cross-reference relevant cases in other chapters. It also includes an appendix of important ethical codes and a glossary of key terms. (shrink)

A model for ethical problem solving -- Values in health and illness -- What is the source of moral judgments? -- Benefiting the patient and others : duty to do good and avoid harm -- Justice : allocation of health resources -- Autonomy -- Veracity : honesty with patients -- Fidelity : promise-keeping, loyalty to patients, and impaired professionals -- Avoidance of killing -- Abortion, sterilization, and contraception -- Genetics, birth, and the biological revolution -- Mental health and behavior (...) control -- Confidentiality : ethical disclosure of medical information -- Organ transplants -- Health insurance, health system planning, and rationing -- Experimentation on human subjects -- Consent and the right to refuse treatment -- Death and dying. (shrink)

The conservation of rice plant genetic diversity is particularly important for resource-poor farmers in economically marginal areas of the Philippines. This paper discusses the state of rice plant genetic diversity in the Philippines and the reasons behind the decrease in diversity witnessed over the last 30 years. A case study describes the in situ management of rice plant genetic diversity by resource-poor farmers from the Philippine island of Bohol, throughout the traditional, green revolution, and post-green revolution periods. This analysis (...) demonstrates that farmers tend to favor genetically heterogeneous varieties that adapt to varied environments. The case study also reviews an NGO-sponsored agricultural biodiversity project that demonstrates that rice plant genetic diversity can be increased by empowering farmers – providing them with access to varieties, knowledge of varietal trials, varietal selection, and varietal breeding, as well as increasing the linkages they have with other farmers and institutions. (shrink)

In the spring of 2013, project leaders who received funding from the John Templeton Foundation’s program “Can GM Crops Help to Feed the World?” met in England to discuss progress on funded projects and to identify common objectives and research interests. The collection of essays in this special symposium is one outcome of that meeting. This introduction provides background on the symposium’s theme of understanding the challenges to smallholder farmers having a voice. Farmer voice is important not only in debates (...) about genetically modified crops but also for policies, technologies and other efforts designed by interests seeking ostensibly to improve the livelihoods of smallholder farmers. (shrink)

To better understand ethical issues involved in the field of human genetics and promote debate within the scientific community, the author surveyed scientists who engage in human genetics research about the pros, cons, and ethical implications of genetic testing. This study contributes systematic data on attitudes of scientific experts. The survey finds respondents are highly supportive of voluntary testing and the right to know one's genetic heritage. The majority consider in utero testing and consequent pregnancy termination (...) acceptable for cases involving likelihood of serious disease but disapprove for genetic reasons they consider arbitrary, leaving a gray area of distinguishing between treatment of disorders and enhancement still to be resolved. While safeguarding patient confidentiality versus protecting at-risk third parties presents a dilemma, preserving privacy from misuse by institutional third parties garners strong consensus for legislation against discrimination. Finally, a call is made for greater genetic literacy. (shrink)

This article proposes a number of models to examine through which mechanisms a population of autonomous agents could arrive at a repertoire of perceptually grounded categories that is sufficiently shared to allow successful communication. The models are inspired by the main approaches to human categorisation being discussed in the literature: nativism, empiricism, and culturalism. Colour is taken as a case study. Although we take no stance on which position is to be accepted as final truth with respect to (...) human categorisation and naming, we do point to theoretical constraints that make each position more or less likely and we make clear suggestions on what the best engineering solution would be. Specifically, we argue that the collective choice of a shared repertoire must integrate multiple constraints, including constraints coming from communication. Key Words: autonomous agents; colour categorisation; colour naming; connectionism; cultural evolution; genetic evolution; memes; origins of language; self-organisation; semiotic dynamics; symbol grounding. (shrink)

Building on the emerging literature on the ethics of social enterprises (SEs), this paper advances the underexplored role of frontline workers (FLWs) as embedded agents at the interface between communities and SEs. Specifically, we uncover the subjectivity of FLWs as they navigate moral ambiguities while performing their professional roles, dealing with rules and regulations within the organizational hierarchy and living as members of local communities. Based on an inductive case study of a microfinance organization in Cameroon, we find that (...) FLWs engage in three rationalization strategies: cautious disengaging, safeguarding self-interest, and justifying relevance. Our findings offer a better understanding of the ethics of SEs by unpacking the subjectivity of FLWs. We highlight a bottom-up account of caring SEs, identify a boundary condition to subjectivity, and present a nuanced view of FLWs in embedded organizations. We also discuss the practical implications for SEs to improve their compassion and cater for the mental wellbeing of FLWs. (shrink)

Can researchers, interested in novel ways to assess HIV seroprevalence among populations which are otherwise hidden, collect condoms that have been discarded on the ground in a public sex environment and test them for HIV? Researchers, who use other types of abandoned samples, such as discarded syringes, hair or saliva samples, or excess biological samples, confront similar issues. This review evaluates whether such abandoned tissues can be studied based on U.S. Code of Federal Regulations and literature on related issues including: (...) research involving banked tissues, blinded seroprevalence studies, and property claims that individuals might make on the samples.It also addresses broader questions of potential for stigma and risk to individuals and communities. The article concludes that the research should be permitted legally because either it does not involve human subjects, or it satisfies the requirements for waiver of consent; and that the research should also be permitted because the ethical principal of avoiding harm to individuals is fully satisfied based on a careful reading of the lessons of the tissue bank, biological property rights, and blinded seroprevalence study debates, as well as a consideration of other potential harms that might be involved. (shrink)

The present ecological crisis imposes a rethinking of the relation between the human being and the rest of nature. Traditional theological articulations of this relation have proven problematic where they foster separatism and anthropocentrism, which give a false report on the relation and have a negative impact on thinking and acting in relation to nature. One place to begin rethinking is through an exploration of the affirmation that the human being is “made in the image of God,”imago dei. (...) Some ways of construing the theological meaning of this designation are more helpful than others. Science has recognized the extent to which the human being is not only dependent upon but even emergent from nature. We are made of the same “stuff” that makes up the rest of the universe. We are nature. The place of the human being is much more modest, recent, and precarious than usually acknowledged in theological reflection. New ways of interpreting our role within nature must evolve out of this new understanding. Philip Hefner has proposed that we think of the human being as created co-creator. His is a distinctive and promising contribution. This essay responds with both affirmations and friendly questions. (shrink)

The rapidly changing field of genetics affects society through advances in health-care and through implications of genetic research. This study addresses the impacts of new genetic discoveries and technologies on different segments of today's society. The book begins with a chapter on genetic complexity, and subsequent chapters discuss moral and ethical questions arising from today's genetics from the perspectives of health care professionals, the media, the general public, special interest groups and commercial interests.

"The Bush administration and Congress are in concert on the goal of developing a fleet of unmanned aircraft that can reduce both defense costs and aircrew losses in combat by taking on at least the most dangerous combat missions. Unmanned combat aerial vehicles (UCAVs) will be neither inexpensive enough to be readily expendable nor-- at least in early development-- capable of performing every combat mission alongside or in lieu of manned sorties. Yet the tremendous potential of such systems is widely (...) recognized, and allies as well as potential adversaries are moving quickly to mount their own research and development programs. The United States is committed to fielding UCAV capabilities by 2010, principally for the missions of suppression of enemy air defense and deep strike, which are among the highest risk tasks for the Air Force and naval aviation."--Overview. (shrink)

One of the great philosophical and theological debates in the second half of the thirteenth century concerned the metaphysical constitution of angels, namely whether they are, like trees and cats and humans, composed of "form" and "matter," in the sense given those terms by the then newly ascendant Aristotle.1 In this period, the field was roughly divided between universal hylomorphism, maintaining that angels are form/matter composites, and spiritual immaterialism, maintaining that spiritual beings such as angels are pure, self-subsistent forms. The (...) former position was championed especially though not exclusively by Franciscan theologians (notably the "Seraphic Doctor," St. Bonaventure of... (shrink)

Society has historically not taken a benign view of genetic disease. The laws permitting sterilization of the mentally re tarded~ and those proscribing consanguineous marriages are but two examples. Indeed as far back as the 5th-10th centuries, B.C.E., consanguineous unions were outlawed (Leviticus XVIII, 6). Case law has traditionally tended toward the conservative. It is reactive rather than directive, exerting its influence only after an individual or group has sustained injury and brought suit. In contrast, state legislatures have not (...) been inhibited in enacting statutes. Many of their products can be characterized as hasty, unnecessary, ill-conceived, and based on the heart rather than the head. Moreover the lack of expert consultation sought has also been remarkable. One state legislature, for example, has advocated immunization for sickle cell anemia! Many others have enacted laws for the screening of inborn errors of metabolism, e.g., phenylketon uria, but have poorly defined the lines of responsibility to secure compliance. A spate of specific disease-related bills has emerged in the u.S. Congress, each seeking recognition and appropriations. Sickle cell anemia, hemophilia, Cooley's anemia and Tay-Sachs disease have been among the front-runners for support. Finally, in 1975, Congress has begun to examine an omnibus bill concerning all forms of genetic disease. The bill, termed the National Genetic Diseases Act is, however, still far from being enacted. (shrink)

This article illustrates the practical usefulness of transdisciplinary work for practical theology by showing how input from an occupational therapist informed my understanding and interpretation of the story of Hannetjie, who had been sexually abused as a child. This forms part of a narrative practical theological research project into the spirituality of female adult survivors of childhood sexual abuse. Transdisciplinary work is useful to practical theologians, as it opens possibilities for learning about matters pastors have to face, but may not (...) have knowledge about. A short retelling of Hannetjie’s story is given to provide information about the context of the research. Next, the transdisciplinary process that was followed is mentioned, and the questions that the transdisciplinary team had to respond to are discussed. Following that, I focus more specifically on the occupational therapist’s answers, and the knowledge gained from her contribution, as an example of how a co-researcher from a divergent discipline can inform a theological study. In this case, knowledge was shared about sensory integration and how the brain processes traumatic stimuli, such as sexual abuse. Lastly, the interrelationship between Hannetjie’s body stories, mind stories and spirit stories is discussed to show how the learning received from occupational therapy affected my thinking about Hannetjie’s stories and the relationships between them. Thus, it is concluded that transdisciplinary work has great value for practical theology, especially in the pastor’s daily work with people who are struggling with difficult stories, because we cannot listen to people’s spirit stories in isolation. They are inextricably intertwined with all our stories about ourselves. (shrink)

Biomedical research is increasingly carried out in low- and middle-income countries. International consensus has largely been achieved around the importance of valid consent and protecting research participants from harm. But what are the responsibilities of researchers and funders to share the benefits of their research with research participants and their communities? After setting out the legal, ethical and conceptual frameworks for benefit sharing, this collection analyses seven historical cases to identify the ethical and policy challenges that arise in relation to (...) benefit sharing. A series of recommendations address possible ways forward to achieve justice for research participants in low- and middle-income countries. (shrink)

_Engaging Bioethics: An Introduction with Case Studies_ draws students into this rapidly changing field, helping them to actively untangle the many issues at the intersection of medicine and moral concern. Presuming readers start with no background in philosophy, it offers balanced, philosophically based, and rigorous inquiry for undergraduates throughout the humanities and social sciences as well as for health care professionals-in-training, including students in medical school, pre-medicine, nursing, public health, and those studying to assist physicians in various capacities. Written (...) by an author team with more than three decades of combined experience teaching bioethics, this book offers Flexibility to the instructor, with chapters that can be read independently and in an order that fits the course structure Up-to-date coverage of current controversies on topics such as vaccination, access to health care, new reproductive technologies, genetics, biomedical research on human and animal subjects, medically assisted death, abortion, medical confidentiality, and disclosure Attention to issues of gender, race, cultural diversity, and justice in health care Integration with case studies and primary sources Pedagogical features to help instructors and students, including Chapter learning objectives Text boxes and figures to explain important terms, concepts, and cases End-of-chapter summaries, key words, and annotated further readings Discussion cases and questions Appendices on moral reasoning and the history of ethical issues at the end and beginning of life An index of cases discussed in the book and extensive glossary/index A companion website with a virtual anthology linking to key primary sources, a test bank, topics for papers, and PowerPoints for lectures and class discussion. (shrink)

In this essay, the directors of an NEH Institute on “Medicine, Literature, and Culture” consider the lessons they learned by bringing humanities scholars to a teaching hospital for a month-long institute that mingled seminar discussions, outside speakers and clinical observations. In an exchange of letters, they discuss the productive tensions inherent in approaching medicine from multiple perspectives, and they argue the case for a broader conception of medical humanities that incorporates the methodologies of cultural studies.

Neurofibromatosis type 1 is associated with peripheral and central nervous system tumors. It is noteworthy that the regions in which these tumors frequently arise are the optic pathways and the brainstem. Thus, we decided to trace the procedure of diffusion Magnetic Resonance Imaging alterations along with Short-Wavelength Automated Perimetry examinations of the OPs after surgery and chemotherapy over 1 year, which enabled us to evaluate chemotherapy's efficacy in an NF1 patient with an OP tumor. In this study, a 25-year-old woman (...) with NF1 and left optic radiation glioma underwent surgery to remove the glioma. Immunohistochemistry revealed a Pilocytic Astrocytoma WHO grade I. Post-operation chemotherapy done using nine treatment cycles of administering Temozolomide for 5 days every 4 weeks. Applying the region of interest differential tractography method and SWAP four times every 3 months allowed us to follow the patient's visual acuity alterations longitudinally. The differential deterministic tractography method and statistical analyses enabled us to discover the white matter tracts anisotropy alterations over time. Furthermore, statistical analyses on the SWAP results along time illustrated possible alterations in visual acuity. Then, we could compare and associate the findings with the SWAP examinations and patient symptoms longitudinally. Statistical analyses of SWAP tests revealed a significant improvement in visual fields, and longitudinal differential tractography showed myelination and dense axonal packing in the left OR after 1 year of treatment. In this study, we examined an old hypothesis suggesting that chemotherapy is more effective than radiotherapy for NF1 patients with OP gliomas because of the radiation side effects on the visual field, cognition, and cerebrovascular complications. Our longitudinal clinical case study involving dMRI and SWAP on a single NF1-OPG patient showed that chemotherapy did not suppress the OP myelination over time. However, it should be noted that this is a clinical case study, and, therefore, the generalization of results is limited. Future investigations might focus on genetic-based imaging, particularly in more cases. Further, meta-analyses are recommended for giving a proper Field Of View to researchers as a subtle clue regarding precision medicine. (shrink)

Researchers studying human behavioral genetics have made significant scientific progress in enhancing our understanding of the relative contributions of genetics and the environment in observed variations in human behavior. Quickly outpacing the advances in the science are its applications in the criminal justice system. Already, human behavioral genetics research has been introduced in the U.S. criminal justice system, and its use will only become more prevalent. This essay discusses the recent historical use of behavioral (...) genetics in criminal cases, recent advances in two gene variants of particular interest in the criminal law, MAOA and SLC6A4, the recent expert testimony on behalf of criminal defendants with respect to these two gene variants, and the future direction of behavioral genetics evidence in criminal cases. (shrink)

From the 1960s, mathematical and computational tools have been developed to arrive at human population trees from various kinds of serological and molecular data. Focusing on the work of the Italian-born population geneticist Luigi Luca Cavalli-Sforza, I follow the practices of tree-building and mapping from the early blood-group studies to the current genetic admixture research. I argue that the visual language of the tree is paralleled in the narrative of the human diasporas, and I show how the (...) tree was actually mapped onto the surface of the earth. This visual and textual structure is mirrored in the liberal discourse of unity in diversity that has been criticized as running counter to the socio-political effects of human population genetics. From this perspective, one may ask how far the phylogenetic diagram in its various forms is a manifestation of the physics of power that according to Michel Foucault consists in mechanisms that analyse distributions, movements, series, combinations, and that uses instruments to render visible, to register, to differentiate and to compare. It is one among other disciplinary technologies that ensure the ordering of human diversity. In the case of intra-human phylogenetic trees, population samples and labels are one issue. Another is that the separated branches seem to show groups of people, who have in reality been interacting and converging, as isolated. Often based on so-called isolated peoples, molecular tree diagrams freeze a hierarchical kinship system that is meant to represent a state before the great historical population movements. (shrink)

Raquel Cascales and Luis Echarte focus on the development of practical wisdom and what they call ‘seeing with the heart’ for science students by means of reading science fiction literature. They argue that literature can bring the student into contact with the reality of moral life as moral dilemmas are made concrete by the characters and circumstances in a novel. They provide an analysis of how Aldous Huxley’s Brave New World can be read in the classroom and show how the (...) novel invites students to think about the role of science in society, the evolutionary paradigm, advances in genetic and psychological manipulation, as well as questions concerning human emotions,suffering, and friendship. (shrink)

The struggle over genetically-engineered (GE) maize in Mexico reveals a deep conflict over the criteria used in the governance of agri-food systems. Policy debate on the topic of GE maize has become “scientized,” granting experts a high level of political authority, and narrowing the regulatory domain to matters that can be adjudicated on the basis of scientific information or “managed” by environmental experts. While scientization would seem to narrow opportunities for public participation, this study finds that Mexican activists acting “in (...) defense of maize” engage science in multiple ways, using and producing scientific knowledge as well as treating scientific discussions as a stage for launching complex social critiques. Drawing from research in science and technology studies, this article assesses the impacts and pitfalls of three tactics used by maize activists that respond to the scientization of biotechnology politics: (1) using scientific information as a resource; (2) participating in scientific research; and (3) reframing policy problems as broadly social, rather than as solely scientific or technical. The obstacles that maize activists have faced in carrying out each of these efforts indicate that despite diverse and sophisticated engagements between social movements and the scientific field, scientization remains a significant institutional barrier to democratizing agricultural governance. (shrink)

Background: In prior reports, we described the design and initial performance of a fully implantable, bi-directional neural interface system for use in deep brain and other neurostimulation applications. Here we provide an update on the chronic, long-term neural sensing performance of the system using traditional 4-contact leads and extend those results to include directional 8-contact leads.Methods: Seven ovine subjects were implanted with deep brain stimulation leads at different nodes within the Circuit of Papez: four with unilateral leads in the anterior (...) nucleus of the thalamus and hippocampus; two with bilateral fornix leads, and one with bilateral hippocampal leads. The leads were connected to either an Activa PC+S® or Percept PC°ledR deep brain stimulation and recording device. Spontaneous local field potentials, evoked potentials, LFP response to stimulation, and electrode impedances were monitored chronically for periods of up to five years in these subjects.Results: The morphology, amplitude, and latencies of chronic hippocampal EPs evoked by thalamic stimulation remained stable over the duration of the study. Similarly, LFPs showed consistent spectral peaks with expected variation in absolute magnitude dependent upon behavioral state and other factors, but no systematic degradation of signal quality over time. Electrode impedances remained within expected ranges with little variation following an initial stabilization period. Coupled neural activity between the two nodes within the Papez circuit could be observed in synchronized recordings up to 5 years post-implant. The magnitude of passive LFP power recorded from directional electrode segments was indicative of the contacts that produced the greatest stimulation-induced changes in LFP power within the Papez network.Conclusion: The implanted device performed as designed, providing the ability to chronically stimulate and record neural activity within this network for up to 5 years of follow-up. (shrink)

In Vanuatu, small-scale farmers’ subsistence still largely relies on the sustainable use and maintenance of a wide-ranging biodiversity out of which root and tuber crops provide the bulk of daily subsistence. In neighboring countries, foreign influence since the first European contacts, further associated changes and the introduction of new crop species have induced a loss of cultivated diversity. This paper presents a baseline study of the diversity of root and tuber crops in ten communities throughout Vanuatu. In a context where (...) the smallholders’ agrosystems are increasingly considered as key components for the global conservation of crop genetic resources, this study provides clues to better understand the effective roles of biodiversity in traditional agrosystems. It also provides insights on the rationale behind the constitution of agricultural portfolios and discusses how the cultivated diversity allows communities to cope with changes and pressures. The paper also shows that recently introduced crops neither seem to have compromised agricultural diversity nor drastically changed the agrosystems in Vanuatu. On the contrary, such crops are used by farmers to strengthen the resilience of their agrosystems. A discussion then presents the idea of continuity through change and novelty as a critical factor for resilience. The paper concludes by discussing the role of indigenous agriculture and culture in ensuring food security and in development strategies in a larger context. (shrink)

We developed an ex silico evolutionary‐based systematic synteny approach to define and name the duplicated genes in vertebrates. The first convention for the naming of genes relied on historical precedent, the order in the human genome, and mutant phenotypes in model systems. However, total‐genome duplication that resulted in teleost genomes required the naming of duplicated orthologous genes (ohnologs) in a specific manner. Unfortunately, as we review here, such naming has no defined criteria, and some ohnologs and their orthologs have (...) suffered from incorrect nomenclature, thus creating confusion in comparative genetics and disease modeling. We sought to overcome this barrier by establishing an ex silico evolutionary‐based systematic approach to naming ohnologs in teleosts. We developed software and compared gene synteny in zebrafish using the spotted gar genome as a reference, representing the unduplicated ancestral state. Using new criteria, we identified several hundred potentially misnamed ohnologs and validated the principle manually. Also see the video abstract here: https://youtu.be/UKNLa_TvSgY. (shrink)

This innovative book focuses on the development of the gene theory as a case study in scientific creativity.

Genetically modified cassava is currently being developed to address problems of diseases that threaten the food security of farmers in developing countries. The technologies are aimed at smallholder farmers, in hopes of reducing the vulnerability of cassava production to these diseases. In this paper we examine barriers to farmers’ voice in the development of GM cassava. We also examine the role of a translational research process to enhance farmers’ voice, to understand the sources of vulnerability farmers in a group in (...) Kenya’s Coast face, and to determine if their concerns are consistent with those of the scientists in agriculture addressing farmers’ needs. A two-way communication participatory process provided insights into the complex vulnerability context of farmers, their primary concerns with processing and markets of cassava in order to improve livelihoods, the lack of networks with two way communication flows, and the lack of information on GM technologies. The translational research engaged farmers and scientists in an iterative process where scientists are learning what farmers need, and farmers are learning about the potential benefits and risks from GM technologies, while at the same time expressing their concerns. (shrink)

“Privacy considerations no longer arise out of particular individual problems; rather, they express conflicts affecting everyone.”Along with the promise of assuaging the scourge of disease, the so-called genetic revolution unquestioningly imports a slew of thorny human rights issues that touch on matters such as dignity, disclosure, and the subject of this article – genetic testing and the social stigma potentially deriving therefrom.It is now rather evident that certain otherwise therapeutically promising forms of research can inadvertently involve social risks exceeding (...) the individual preoccupations of eclectic study participants. With that as the case, the following proposes to examine the peculiar stigma attached to genetic information and its potential human rights implications extending beyond the insurance and employment context. In so doing, it raises the intersection of interests between self-identified members of historically vulnerable groups and the group itself, which the law seems to take for granted in the genetics context. (shrink)

A common and driving assumption in agricultural research is that the introduction of research trials, new practices and innovative technologies will result in technology adoption, and will subsequently generate benefits for farmers and other stakeholders. In Lao PDR, the potential benefits of introduced technologies have not been fully realised by beneficiaries. We report on an analysis of a survey of 735 smallholder farmers in Southern Lao PDR who were questioned about factors that influenced their decisions to adopt new technologies. In (...) this study, we have constructed measures or states of adoption which identify key elements of an adoption decision-making nexus. Analysis was conducted to statistically group explanatory factors of adoption. The key explanatory factors represented attributes of the farmer, the factors considered when undertaking production decisions and elements of the agricultural value chain that present as opportunities or constraints. We describe the combination of farmer’s personal attributes, perceptions of the value chain, and the introduction of new technologies by external actors as an “agricultural research value chain”, where agricultural research activities intervene to derive greater benefits for local farmers. A generalised linear model, via Poisson regression analysis on the identified explanatory factors, was applied to explore how they influence adoption measures and we found several significant relationships. (shrink)

Building on the evidence from the impact of hybrid technology on varietal diversity loss, this paper explores ex ante the possible effects of introduction of Bt eggplant on on-farm varietal diversity of eggplant. The public–private partnership involved in the development and introduction of Bt eggplant provides a great opportunity to develop locally-adapted Bt open-pollinated varieties (OPVs) instead of having a limited number of generic hybrid varieties. The study shows that introduction of multiple Bt OPVs by public institutions will reduce the (...) rate of replacement of OPVs by hybrids and thus help in conserving varietal diversity. However, the cost of developing multiple Bt OPVs is high; hence policy makers need to look at alternative measures to maintain the varietal diversity of crops such as eggplant in its centers of diversity. (shrink)