In lieu of an abstract, here is a brief excerpt of the content:Asymmetry, Essentialism, and Covert Cultural Imperialism: Should Buddhists and Christians Do Theoretical Work Together?Grace G. BurfordMeaningful dialogue among Buddhists and Christians on any topic—theological or otherwise—requires the participation of open-minded and mutually respectful Buddhists and Christians. It is just such Christians and Buddhists who founded the Society for Buddhist-Christian Studies (SBCS), and it is this society's ongoing commitment to a balance of Buddhists and Christians, as well as (...) other forms of diversity, in our programs and projects that has kept this dialogue lively. In this supportive context, Christians have done some excellent work in developing their religious thinking by reflecting on Buddhism, as have Buddhists by engaging with Christian theology. Nevertheless, a certain asymmetry has at times emerged in our dialogical endeavors, particularly when it comes to theological issues: it seems there might be more Christians interested in Buddhist thought than Buddhists interested in Christian theology.Asymmetry of InterestThis asymmetry became clear to me when I contributed to two books Rita M. Gross and Terry C. Muck put together in 2000 and 2003. In the introduction to the first of these books, Buddhists Talk about Jesus, Christians Talk about the Buddha, Gross notes that the Christian authors who contributed to this volume attest to a far greater positive impact of the Buddha and Buddhism on their Christian lives than the Buddhists attribute to Jesus or Christianity. 1 Gross offers two possible explanations for this asymmetry. First, she says Christians may feel free to admire the Buddha without facing any resulting pressure from Buddhists to convert to Buddhism, whereas Buddhists who might be drawn to Jesus could expect to be the targets of Christian proselytization. Related to this first explanation, Gross also implies, if I read her correctly, that these Christians' guilty feelings about Christianity's history of missionizing and proselytization [End Page 147] might lead them to emphasize their appreciation of a non-Christian religion—a sentiment the Buddhists, understandably, would not be inclined to reciprocate. Second, Gross points out that Buddhist claims about the Buddha leave room for Christians to admire the Buddha without compromising their Christian views and commitments, a point I also make in my Buddhist response to the Christians' essays in this book. 2 Gross goes on to note that parallel Christian claims about Jesus leave no such leeway for the Buddhists. She says, "Christians do claim that Jesus is the incarnation of a deity who creates and redeems the world and such claims run counter to essential Buddhist ideas about how the world works." 3 In other words, Christians can venture into Buddhism's teachings about the Buddha (what we might properly call "Buddhology") without compromising their Christian theology, but Christian doctrine about Jesus (i.e., Christology) prevents Buddhists from gaining anything meaningful from this area of Christian theology without forfeiting their Buddhist worldview.The contrast is even more noticeable between the Buddhist and Christian halves of the second book, Christians Talk about Buddhist Meditation, Buddhists Talk about Christian Prayer. In their contributions to this book Christians describe how they have adopted Buddhist meditations as components of their Christian spiritual paths, and Buddhists write about how some Buddhist practices can be seen as resembling what Christians call "prayer." In the conclusion of this book, Gross suggests that this difference occurs because these Christians are incorporating a specific type of meditation (concentration) associated with Buddhism, practice of which does not require that the Christians take Buddhist teachings about the nature of reality seriously. But Christian prayer and other forms of Christian contemplation or meditation "all seem to have as a prerequisite a Christian view of the world." 4In both of these examples of Buddhist-Christian dialogue, it seems that the Christians involved can, and do, happily use Buddhism as a resource for their Christian theology and spiritual practices. But these Buddhists hold back and seem precluded from benefitting similarly from the dialogue. The editors confirm this impression when they describe a practical matter that came up when they were recruiting contributors to the second book. Muck says that "the Christians were more eager to take on this assignment than were [the] Buddhists," 5 and Gross adds that... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:If the Buddha Is So Great, Why Are These People Christians?Grace G. BurfordSince I began to study Buddhism as a Swarthmore College undergraduate and recognized my worldview as Buddhist, I have been puzzled about Christians who care about the Buddha. Why would a Christian care about the Buddha? I don’t care a whit about Jesus, hence my difficulty in fathoming how a Christian could get all caught up (...) in the Buddha. To put it another way, especially when I was first “turned on” to Buddhism (it was, after all, the seventies), I had trouble understanding why people who had studied Buddhism extensively, and whom I respected as otherwise quite smart and sensible, seemed to be doggedly determined to stay Christians! All of my Buddhism teachers in the course of my undergraduate and graduate study (with the notable exception of Walpola Rahula) fell in this category, it seemed—though we never really discussed it. Why didn’t we discuss it? I did wonder about how they could dedicate their professional lives to—and be such effective teachers of—a tradition they did not believe in. If they were so taken by Buddhism, why did they hang on to Christianity? If they were Christians, why did they study and teach Buddhism? I guess I assumed it would be impertinent to pursue this question with my teachers and mentors; they were probably (justifiably) somewhat embarrassed by this backwards attachment to Christianity in the face of an obviously superior religion, Buddhism.Why was I so ready to pitch Christianity and take up Buddhism, and my Buddhism teachers were not? Unlike these mentors, by the time I began my study of Buddhism I had already rejected the Christianity in which I was raised. I don’t know why exactly I rejected Christianity so decisively; I had not experienced any trauma in Sunday school and had always loved the community my church provided. But during my junior year in high school I came to the point where I felt certain that I did not believe, nor had I ever really believed, a single word of the Christian creed I could recite so flawlessly. From that time until I discovered Buddhism, I made science-and-rationality my religion. In retrospect, I find it telling that the science I immersed myself in was astronomy—where there was plenty of room for mystery and wonder as I gazed two nights a week through Sproul Observatory’s powerful [End Page 129] twenty-four-inch refractor telescope into the night skies, in the coolest job a college student ever had. I will forever be an advocate of college course-distribution requirements, since it was these—and a friend who confided that “religion courses are not too bad”—that led me to take my first course from Donald Swearer. That same friend avers that I became a religion major because of my work at the telescope. Whatever the explanation, I felt fortunate to have run across Buddhism, to have found a mentor who could teach it so well, and to have discovered a religious path I could embrace enthusiastically. So why did my teacher hold back? Now there was a mystery.I have confessed before in the pages of this journal that my motives for participating in Buddhist-Christian dialogue and cross-religious discussions in general might seem ignoble, or at least not up to the usual expectations of this group. For some reason, my total abandonment of Christianity in my teen years has stuck (well into my forties, anyway). I honestly do not expect my predominantly Buddhist worldview to be enriched by learning more about Christianity. Nevertheless, I am fascinated with and continually enriched by other people and their religions. Despite my aversion to Christianity, I see that Christians are people, too. In fact, I am surrounded by Christians who, for better or worse, operate out of a Christian worldview. I am convinced we need each other, that we must work together to make the world a better place, especially in terms of the environmental crisis and social justice issues. So I am stuck with needing to understand Christians, especially the ones (such as the members of this... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Buddhist-Christian Studies 23 (2003) 39-41 [Access article in PDF] Wishing I Were Here:Postcards from My Religious Journey Grace G. Burford Prescott College Summer 1966, Bowling Green, Kentucky An energetic ten-year-old, sitting on a red-cushioned wooden pew in a Presbyterian church leans over to her mother to whisper, "Which is it? Are we supposed to be like little children, or leave behind our childish ways?" After church, her mother (...) does a reasonably good job at answering the question.Later, perhaps even later that day, this little girl has gleefully exchanged her dress and going-to-church shoes for a cotton shirt and shorts and blue Keds, and has escaped to her favorite spot in the woods behind her house. There she swings on vines in imitation of Tarzan and plays contentedly on her own for hours, feeling utterly at home.In this scene, we see that the little girl has discovered that she can best deal with a certain type of recurring physical pain by focusing her entire attention on her breath, as she silently repeats "breathing in, breathing out." Fall 1971, Bryn Mawr, Pennsylvania A group of eight or so teenagers attend their English literature class at an elite college-preparatory school for girls. Our hero, recently arrived, southern accent still quite in evidence, revels in real education; this a delightfully stark contrast to what she got from Kentucky public schools, then forty-ninth in the nation according to some poll or other—only Mississippi's were worse. In this particular class she finds herself defending Presbyterians against what she considers simply inaccurate descriptions of them by James Joyce. At the same time, she is waking up to the realization that she does not believe—and the suspicion that she never really has believed—the Christian doctrines she has been raised on. Indeed, she feels quite foolish for never having properly examined what exactly she had bought into when she participated in all those church activities. She can't recall ever actually believing in "God the Father, Almighty, Maker of Heaven and Earth," much less in "Jesus Christ, His only Son, Our Lord," and all the rest of it. [End Page 39] Spring 1975, Swarthmore, Pennsylvania Having thoroughly rejected religion—for she knows none other than the one she grew up with—our hero pursues study of astronomy, math, language, and music, quite intent on becoming a college professor of some subject or another. Somewhat annoyed that she must take two courses in the curricular area that includes religion, philosophy, anthropology, and sociology, but encouraged by her friends' assertions that religion courses are "not too bad," she signs up for religion and science, figuring that at least half of it will be rational. At the same time, she takes a course on Asian religions. Sometime in the middle of a clear spring night we find her engaged in her part-time job, seated at the eyepiece end of a twenty-meter-long, twenty-four-inch refracting telescope, patiently keeping a star placed just so on the cross-hairs in the siting scope, making fine adjustments to the telescope's precise tracking while the light of stars collects on glass plates coated with very fast photographic emulsion. Between clicks of the shutter she ponders the curiously attractive ideas she is encountering in her religion courses this term. Spring 1983, Evanston, Illinois Our hero earns a Ph.D. in the history and literature of religions, with a focus on Buddhism and Hinduism, and heads for Washington, D.C., to become what she had always aspired to be—a college professor. Summer 1997, Interstate 40 Having experienced a denial of tenure, the challenges of part-time college teaching, training and freelance work in the field of copyediting, life as a wildlife-wielding teacher of auditoria full of elementary school children, an administrative job as second-in-command to a self-described megalomaniac, and the vagaries of teaching two hundred students a term—this lifelong seeker eagerly moves across the country to start a job teaching at an alternative, experiential learning-based... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Buddhist-Christian Studies 21.1 (2001) 63-67 [Access article in PDF] A Buddhist Reflects (Practices Reflection) on Some Christians' Reflections on Buddhist Practices Grace Burford Prescott College A tourist lost in New York City asks of a passerby, "How do I get to Carnegie Hall?"The musically inclined informant replies, "Practice, practice, practice!" Often people who have just heard I am a college professor with a specialty in Buddhism ask me (...) "Are you a practicing Buddhist?" This question has always stumped me. My most common retort (it's not really an answer), "I keep practicing; maybe someday I'll get it right," both evades and critiques the question. As we use the term in everyday conversation, "practice" generally means disciplined repetition of an activity, usually in preparation for a performance of some kind. In relation to a religious path, "practice" usually refers to the integration of certain prescribed actions (practices) in one's life. My retort derives from the mixing of these two meanings of the word "practice," and the assumption that--for one reason or another--religious practice does not lead to a perfect performance in the spiritual equivalent of Carnegie Hall.The form of the question puzzles me. Why do they ask about my practice? Why not just ask me "Are you a Buddhist?" I think they expect to discover that I engage in a Buddhist equivalent of going to church. Maybe the inclusion of practice in the question indicates anticipation of some level of earnestness, of application of my self/energy/time in service of my religion--some outward, observable manifestation of my religious orientation, above and beyond just teaching college students about this religion. Perhaps they expect me to confess to being a vegetarian, or meditating, or chanting, or attending Buddhist services of some kind. Although I find the question somewhat intrusive, I understand that most often it arises from well-meaning curiosity, if not genuine interest, and I try to follow my retort with something more pedagogically effective.For most of my life, practice has been about music. I sang before I talked; I began to study piano at an early age; in elementary school I took up guitar and clarinet; in high school I started voice lessons. Learning to play all of these instruments required [End Page 63] practice. Recently, I took up the electric bass guitar, and I'm back to daily practicing. Practice does produce something; it is linearly causal. If I practice my instrument, I get better at producing the sounds I want to produce. Only a nonmusician would say this does not amount to a real accomplishment. At the same time, the activity one practices is the same activity one hopes to perform: I play the bass when I practice, in order to be able to play the bass. Still, I must practice--to get where I want to go, to improve the quality of my playing. After all, I first heard the Carnegie Hall joke from my guitar teacher, who told it both to amuse me and to inspire me to practice, practice, practice. At about the same time, author Catherine Drinker Bowen advised a group of us high school students that--based on her experiences growing up in a family full of musicians--the most effective way to learn an instrument is to fall in love with one's music teacher. In other words, desire serves the crucial function of inspiring one to practice. Yet I know that the same desire that motivates me to practice so that I can play more skillfully (as in "practice makes perfect") can hold me back if I focus on that future desired skillful playing (the "perfection") instead of the present moment of my playing. Further, I can practice to the point of technical expertise--I can accomplish that skill level I am aiming for in practice--and still not produce the musical quality I aspire to play. Practice does produce something necessary, but that something does not suffice. Musicians are no better at naming that other necessary ingredient than are... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Buddhist-Christian Studies 21.1 (2001) 63-67 [Access article in PDF] A Buddhist Reflects (Practices Reflection) on Some Christians' Reflections on Buddhist Practices Grace Burford Prescott College A tourist lost in New York City asks of a passerby, "How do I get to Carnegie Hall?"The musically inclined informant replies, "Practice, practice, practice!" Often people who have just heard I am a college professor with a specialty in Buddhism ask me (...) "Are you a practicing Buddhist?" This question has always stumped me. My most common retort (it's not really an answer), "I keep practicing; maybe someday I'll get it right," both evades and critiques the question. As we use the term in everyday conversation, "practice" generally means disciplined repetition of an activity, usually in preparation for a performance of some kind. In relation to a religious path, "practice" usually refers to the integration of certain prescribed actions (practices) in one's life. My retort derives from the mixing of these two meanings of the word "practice," and the assumption that--for one reason or another--religious practice does not lead to a perfect performance in the spiritual equivalent of Carnegie Hall.The form of the question puzzles me. Why do they ask about my practice? Why not just ask me "Are you a Buddhist?" I think they expect to discover that I engage in a Buddhist equivalent of going to church. Maybe the inclusion of practice in the question indicates anticipation of some level of earnestness, of application of my self/energy/time in service of my religion--some outward, observable manifestation of my religious orientation, above and beyond just teaching college students about this religion. Perhaps they expect me to confess to being a vegetarian, or meditating, or chanting, or attending Buddhist services of some kind. Although I find the question somewhat intrusive, I understand that most often it arises from well-meaning curiosity, if not genuine interest, and I try to follow my retort with something more pedagogically effective.For most of my life, practice has been about music. I sang before I talked; I began to study piano at an early age; in elementary school I took up guitar and clarinet; in high school I started voice lessons. Learning to play all of these instruments required [End Page 63] practice. Recently, I took up the electric bass guitar, and I'm back to daily practicing. Practice does produce something; it is linearly causal. If I practice my instrument, I get better at producing the sounds I want to produce. Only a nonmusician would say this does not amount to a real accomplishment. At the same time, the activity one practices is the same activity one hopes to perform: I play the bass when I practice, in order to be able to play the bass. Still, I must practice--to get where I want to go, to improve the quality of my playing. After all, I first heard the Carnegie Hall joke from my guitar teacher, who told it both to amuse me and to inspire me to practice, practice, practice. At about the same time, author Catherine Drinker Bowen advised a group of us high school students that--based on her experiences growing up in a family full of musicians--the most effective way to learn an instrument is to fall in love with one's music teacher. In other words, desire serves the crucial function of inspiring one to practice. Yet I know that the same desire that motivates me to practice so that I can play more skillfully (as in "practice makes perfect") can hold me back if I focus on that future desired skillful playing (the "perfection") instead of the present moment of my playing. Further, I can practice to the point of technical expertise--I can accomplish that skill level I am aiming for in practice--and still not produce the musical quality I aspire to play. Practice does produce something necessary, but that something does not suffice. Musicians are no better at naming that other necessary ingredient than are... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Buddhist-Christian Studies 21.1 (2001) 63-67 [Access article in PDF] A Buddhist Reflects (Practices Reflection) on Some Christians' Reflections on Buddhist Practices Grace Burford Prescott College A tourist lost in New York City asks of a passerby, "How do I get to Carnegie Hall?"The musically inclined informant replies, "Practice, practice, practice!" Often people who have just heard I am a college professor with a specialty in Buddhism ask me (...) "Are you a practicing Buddhist?" This question has always stumped me. My most common retort (it's not really an answer), "I keep practicing; maybe someday I'll get it right," both evades and critiques the question. As we use the term in everyday conversation, "practice" generally means disciplined repetition of an activity, usually in preparation for a performance of some kind. In relation to a religious path, "practice" usually refers to the integration of certain prescribed actions (practices) in one's life. My retort derives from the mixing of these two meanings of the word "practice," and the assumption that--for one reason or another--religious practice does not lead to a perfect performance in the spiritual equivalent of Carnegie Hall.The form of the question puzzles me. Why do they ask about my practice? Why not just ask me "Are you a Buddhist?" I think they expect to discover that I engage in a Buddhist equivalent of going to church. Maybe the inclusion of practice in the question indicates anticipation of some level of earnestness, of application of my self/energy/time in service of my religion--some outward, observable manifestation of my religious orientation, above and beyond just teaching college students about this religion. Perhaps they expect me to confess to being a vegetarian, or meditating, or chanting, or attending Buddhist services of some kind. Although I find the question somewhat intrusive, I understand that most often it arises from well-meaning curiosity, if not genuine interest, and I try to follow my retort with something more pedagogically effective.For most of my life, practice has been about music. I sang before I talked; I began to study piano at an early age; in elementary school I took up guitar and clarinet; in high school I started voice lessons. Learning to play all of these instruments required [End Page 63] practice. Recently, I took up the electric bass guitar, and I'm back to daily practicing. Practice does produce something; it is linearly causal. If I practice my instrument, I get better at producing the sounds I want to produce. Only a nonmusician would say this does not amount to a real accomplishment. At the same time, the activity one practices is the same activity one hopes to perform: I play the bass when I practice, in order to be able to play the bass. Still, I must practice--to get where I want to go, to improve the quality of my playing. After all, I first heard the Carnegie Hall joke from my guitar teacher, who told it both to amuse me and to inspire me to practice, practice, practice. At about the same time, author Catherine Drinker Bowen advised a group of us high school students that--based on her experiences growing up in a family full of musicians--the most effective way to learn an instrument is to fall in love with one's music teacher. In other words, desire serves the crucial function of inspiring one to practice. Yet I know that the same desire that motivates me to practice so that I can play more skillfully (as in "practice makes perfect") can hold me back if I focus on that future desired skillful playing (the "perfection") instead of the present moment of my playing. Further, I can practice to the point of technical expertise--I can accomplish that skill level I am aiming for in practice--and still not produce the musical quality I aspire to play. Practice does produce something necessary, but that something does not suffice. Musicians are no better at naming that other necessary ingredient than are... (shrink)

Background Several jurisdictions, including Singapore, Australia, New Zealand and most recently Ireland, have a public interest or public good criterion for granting waivers of consent in biomedical research using secondary health data or tissue. However, the concept of the public interest is not well defined in this context, which creates difficulties for institutions, institutional review boards and regulators trying to implement the criterion. Main text This paper clarifies how the public interest criterion can be defensibly deployed. We first explain the (...) ethical basis for requiring waivers to only be granted to studies meeting the public interest criterion, then explore how further criteria may be set to determine the extent to which a given study can legitimately claim to be in the public interest. We propose an approach that does not attempt to measure magnitude of benefit directly, but rather takes into account metrics that are more straightforward to apply. To ensure consistent and justifiable interpretation, research institutions and IRBs should also incorporate procedural features such as transparency and public engagement in determining which studies satisfy the public interest requirement. Conclusion The requirement of public interest for consent waivers in secondary biomedical research should be guided by well-defined criteria for systematic evaluation. Such a criteria and its application need to be periodically subject to intra-committee and intra-institution review, reflection, deliberation and amendment. (shrink)

Widely adopted for classroom use, this book offers translations of four major works of ancient Greek literature which treat the life and thought of Socrates, focusing particularly on his trial and defense (the platonic dialogues Euthyphro,...

BackgroundMulti-centre studies generally cost more than single-centre studies because of larger sample sizes and the need for multiple ethical approvals. Multi-centre studies include clinical trials, clinical quality registries, observational studies and implementation studies. We examined the costs of two large Australian multi-centre studies in obtaining ethical and site-specific approvals.MethodsWe collected data on staff time spent on approvals and expressed the overall cost as a percent of the total budget.ResultsThe total costs of gaining approval were 38 % of the budget for (...) a study of 50 centres (mean cost AUD $6960 per site) and 2 % for a study of 11 centres (mean cost AUD $2300 per site). Seventy-five and 90 % of time was spent on repeated tasks, respectively, and many time-consuming tasks, such as reformatting documents, did nothing to improve the study design or participant safety.ConclusionsImprovements have been made to the ethical approval application system, but more gains could be made without increasing risks of harm to research participants. We propose that ethical review bodies and individual sites publish statistics on how long they take to process approvals which could then be nationally benchmarked. (shrink)

BackgroundCommunity engagement within biomedical research is broadly defined as a collaborative relationship between a research team and a group of individuals targeted for research. A Community Advisory Board is one mechanism of engaging the community. Within genomics research CABs may be particularly relevant due to the potential implications of research findings drawn from individual participants on the larger communities they represent. Within such research, CABs seek to meet instrumental goals such as protecting research participants and their community from research-related risks, (...) as well as intrinsic goals such as promoting the respect of participants and their community. However, successful community engagement depends on the degree to which CABs legitimately represent and engage with communities targeted for research. Currently, there is little literature describing the use of CABs in genomics research taking place in developing countries, and even less in the field of genomics research relating to mental illness. The aim of this article is to describe and consider the contributions made by a researcher-driven, population-specific CAB in a genomics of schizophrenia research project taking place in South Africa, from the perspective of the research team.DiscussionFour broad discussion topics emerged during the CAB meetings namely: 1) informed consent procedures, 2) recruitment strategies, 3) patient illness beliefs and stigma experiences, and 4) specific ethical concerns relating to the project. The authors consider these discussions in terms of their contributions to instrumental and intrinsic goals of community engagement.SummaryThe CAB gave valuable input on the consent processes and materials, recruitment strategies and suggested ways of minimizing the potential for stigma and discrimination. All of these contributions were of an instrumental nature, and helped improve the way in which the research took place. In addition, and perhaps more importantly, the CAB made a unique and important contribution relating to intrinsic functions such as promoting the respect and dignity of research participants and their community. This was particularly evident in ensuring sensitivity and respect of the community’s traditional beliefs about schizophrenia and its treatment, and in this way promoting a respectful relationship between the research team and the participants. (shrink)

Randomized controlled trial trial designs exist on an explanatory-pragmatic spectrum, depending on the degree to which a study aims to address a question of efficacy or effectiveness. As conceptualized by Schwartz and Lellouch in 1967, an explanatory approach to trial design emphasizes hypothesis testing about the mechanisms of action of treatments under ideal conditions, whereas a pragmatic approach emphasizes testing effectiveness of two or more available treatments in real-world conditions. Interest in, and the number of, pragmatic trials has grown substantially (...) in recent years, with increased recognition by funders and stakeholders worldwide of the need for credible evidence to inform clinical decision-making. This increase has been accompanied by the onset of learning healthcare systems, as well as an increasing focus on patient-oriented research. However, pragmatic trials have ethical challenges that have not yet been identified or adequately characterized. The present study aims to explore the views of key stakeholders with respect to ethical issues raised by the design and conduct of pragmatic trials. It is embedded within a large, four-year project that seeks to develop guidance for the ethical design and conduct of pragmatic trials. As a first step, this study will address important gaps in the current empirical literature with respect to identifying a comprehensive range of ethical issues arising from the design and conduct of pragmatic trials. By opening up a broad range of topics for consideration within our parallel ethical analysis, we will extend the current debate, which has largely emphasized issues of consent, to the range of ethical considerations that may flow from specific design choices. Semi-structured interviews with key stakeholders, across multiple jurisdictions, identified based on their known experience and/or expertise with pragmatic trials. We expect that the study outputs will be of interest to a wide range of knowledge users including trialists, ethicists, research ethics committees, journal editors, regulators, healthcare policymakers, research funders and patient groups. All publications will adhere to the Tri-Agency Open Access Policy on Publications. (shrink)

Dilemmas about resuscitation and life-prolonging treatment for severely compromised infants have become increasingly complex as skills in neonatal care have developed. Quality of life and resource issues necessarily influence management. Our Institute of Medical Ethics working party, on whose behalf this paper is written, recognises that the ultimate responsibility for the final decision rests with the doctor in clinical charge of the infant. However, we advocate a team approach to decision-making, emphasising the important role of parents and nurses in the (...) process. Assessing the relative burdens and benefits can be troubling, but doctors and parents need to retain a measure of discretion; legislation which would determine action in all cases is inappropriate. Caution should be exercised in involving committees in decision-making and, where they exist, their remit should remain to advise rather than to decide. Support for families who bear the consequences of their decisions is often inadequate, and facilitating access to such services is part of the wider responsibilities of the intensive care team. The authors believe that allowing death by withholding or withdrawing treatment is legitimate, where those closely involved in the care of the infant together deem the burdens to be unacceptable without compensating benefits for the infant. As part of the process accurate and careful recording is essential. (shrink)

A literal translation, allowing the simplicity and vigor of the Greek diction to shine through.

Cell line immortalisation is a growing component of African genomics research and biobanking. However, little is known about the factors influencing consent to cell line creation and immortalisation in African research settings. We contribute to addressing this gap by exploring three questions in a sample of Xhosa participants recruited for a South African psychiatric genomics study: First, what proportion of participants consented to cell line storage? Second, what were predictors of this consent? Third, what questions were raised by participants during (...) this consent process? 760 Xhose people with schizophrenia and 760 controls were matched to sex, age, level of education and recruitment region. We used descriptive statistics to determine the proportion of participants who consented to cell line creation and immortalization. Logistic regression methods were used to examine the predictors of consent. Reflections from study recruiters were elicited and discussed to identify key questions raised by participants about consent. Approximately 40% of participants consented to cell line storage. The recruiter who sought consent was a strong predictor of participant’s consent. Participants recruited from the South African Eastern Cape, and older participants, were more likely to consent; both these groups were more likely to hold traditional Xhosa values. Neither illness nor education were significant predictors of consent. Key questions raised by participants included two broad themes: clarification of what cell immortalisation means, and issues around individual and community benefit. These findings provide guidance on the proportion of participants likely to consent to cell line immortalisation in genomics research in Africa, and reinforce the important and influential role that study recruiters play during seeking of this consent. Our results reinforce the cultural and contextual factors underpinning consent choices, particularly around sharing and reciprocity. Finally, these results provide support for the growing literature challenging the stigmatizing perception that people with severe mental illness are overly vulnerable as a target group for heath research and specifically genomics studies. (shrink)