Doctoral programs at U.S. universities play a critical role in the development of human resources both in the United States and abroad. This volume reports the results of an extensive study of U.S. research-doctorate programs in five broad fields: physical sciences and mathematics, engineering, social and behavioral sciences, biological sciences, and the humanities. Research-Doctorate Programs in the United States documents changes that have taken place in the size, structure, and quality of doctoral education since the widely used (...) 1982 editions. This update provides selected information on nearly 4,000 doctoral programs in 41 subdisciplines at 274 doctorate-granting institutions. This volume also reports the results of the National Survey of Graduate Faculty, which polled a sample of faculty for their views on the scholarly quality of program faculty and the effectiveness of doctoral programs in preparing research scholars/scientists. This much-anticipated update of such an essential reference will be useful to education administrators, university faculty, and students seeking authoritative information on doctoral programs. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 14.1 (2004) 47-54 [Access article in PDF] Ethical Guidelines for Human Embryonic Stem Cell Research*(A Recommended Manuscript) Adopted on 16 October 2001Revised on 20 August 2002 Ethics Committee of the Chinese National Human Genome Center at Shanghai, Shanghai 201203 Human embryonic stem cell (ES) research is a great project in the frontier of biomedical science for the twenty-first century. Be- cause the (...) research involves the use of human embryos, it triggers serious debate on ethical issues. Opponents consider the embryo to be an early form of human life that should be respected and not destroyed. However, the majority of scientists support embryonic stem cell research, believing that it offers good prospects for the treatment of diseases that have remained incurable until now and so will benefit humankind. The Ethics Committee of the Department of Ethical, Legal, and Social Implications of the Chinese National Human Genome Center at Shanghai seriously discussed the ethical debate initiated by embryonic stem cell research. We concluded that we should support the scientists of our country in actively carrying out human embryonic stem cell research for the noble cause of "medicine being a beneficent art." For the healthy and orderly development of human embryonic stem cell research in our country, we put forward the following recommended Ethical Guidelines for Human Embryonic Stem Cell Research as a reference for leaders, administrative departments, and related scientists. Preface Article 1. Human embryonic stem cells are the primitive cells that play the main role in the growth and development of a human body. These [End Page 47] primitive cells have the potential for infinite proliferation, self-renewal, and multi-directional differentiation. If scientists can discover the mechanism of differentiation of human embryonic stem cells, it will be possible to induce differentiation of human embryonic stem cells to form various types of human cells for clinical cell therapy. If human embryonic stem cell research can be integrated with modern biomedical engineering techniques, it also will be possible to make repair and replacement of human tissues and organs a reality. Article 2. There are two ways to classify human embryonic stem cells. One way is to classify them according to their potential for differentiation. There could be three kinds of stem cells: totipotent stem cells, pluripotent stem cells, and unipotent stem cells.A totipotent stem cell has the potential to develop into a whole individual. It can differentiate into the more than 200 cell types in the whole body, construct any tissue or organ of the body, and finally develop into a whole individual. The fertilized egg and the cleavage cells at the very early stage of embryonic development are totipotent stem cells.A pluripotent stem cell has the potential to differentiate into many cell types derived from the three embryonic layers. However, it has lost the capacity to develop into a complete organism.A unipotent stem cell is derived from the further differentiation of the pluripotent stem cell. It can differentiate only into one cell type such as a hematopoietic stem cell, neural stem cell, and others.The other way is to classify human stem cells according to their source. There could be two kinds of human stem cells: embryonic stem cells and tissue stem cells (also called adult stem cells). The former involves experimentation with embryos, which has serious ethical implications. Ethical issues associated with the latter are mainly expressed in the various opinions regarding the allocation of health resources. Article 3. Human embryonic stem cells are the group of cells called the blastocyst inner cell mass during the early stage of embryonic development. They are the main source of totipotent stem cells, and hence the focal and hot point in stem cell research. Studies on the clinical application of embryonic stem cells probably will involve use of the somatic cell nucleus transfer (SCNT) technique, which destroys the early human embryo. At present, the ethical and moral debate is very serious in human embryonic stem cell research regarding whether the research will develop... (shrink)

Many prescriptions offered in the literature for enhancing creativity and innovation in organizations raise ethical concerns, yet creativity researchers rarely discuss ethics. We identify four categories of behavior proffered as a means for fostering creativity that raise serious ethical issues: breaking rules and standard operating procedures; challenging authority and avoiding tradition; creating conflict, competition and stress; and taking risks. We discuss each category, briefly identifying research supporting these prescriptions for fostering creativity and then we delve into ethical issues associated (...) with engaging in the prescribed behavior. These four rubrics illustrate ethical issues that need to be incorporated into the creativity and innovation literature. Recommendations for how organizations can respond to the ethical issues are offered based on practices of exemplary organizations and theories of organizational ethics. A research agenda for empirically investigating the ethical impact these four categories of behavior have on organizations concludes the article. (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)

The various statements and declarations of the World Medical Association that address conflicts of interest on the part of physicians as (1) researchers, and (2) practitioners, are examined, with particular reference to the October 2000 revision of the Declaration of Helsinki. Recent contributions to the literature, notably on conflicts of interest in medical research, are noted. Finally, key provisions of the American Medical Association’s Code of Medical Ethics (2000–2001 Edition) that address the various forms of conflict of interest that (...) can arise in the practice of medicine are outlined. (shrink)

In this essay, I consider the implications for traditional philosophical ethics posed by discoveries in brain research or neurocognition as well as psychological discoveries concerning human biases and cognitive limitations presented in behavioral economics. I conclude that although there still is much for philosophical ethics to do, the empirical research shows that human freedom and responsibility for ethical decisions is somewhat diminished and that choice architecture and nudges through public policy become important for getting people to do the (...) right thing. (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.

Many prescriptions offered in the literature for enhancing creativity and innovation in organizations raise ethical concerns, yet creativity researchers rarely discuss ethics. We identify four categories of behavior proffered as a means for fostering creativity that raise serious ethical issues: (1) breaking rules and standard operating procedures; (2) challenging authority and avoiding tradition; (3) creating conflict, competition and stress; and (4) taking risks. We discuss each category, briefly identifying research supporting these prescriptions for fostering creativity and then we delve (...) into ethical issues associated with engaging in the prescribed behavior. These four rubrics illustrate ethical issues that need to be incorporated into the creativity and innovation literature. Recommendations for how organizations can respond to the ethical issues are offered based on practices of exemplary organizations and theories of organizational ethics. A research agenda for empirically investigating the ethical impact these four categories of behavior have on organizations concludes the article. (shrink)

A reflexão que se desenvolve, aqui, reporta-se ao contexto de um período caracterizado por questionamentos profundos, no que tange à tensão entre as diferentes concepções de ciência, verdade, método, ética científica. O eixo da discussão incide sobre o lugar da ética neste século, exercendo o papel de problematizadora de uma vinculação fetichista a determinada visão acerca da verdade, visão esta que tem mantido as Ciências Humanas refém de um olhar cético em relação à legitimidade do conhecimento que produz. O objetivo (...) principal, aqui, é provocar um debate que instigue a uma visão que venha a transcender a oposição excludente entre Ciências Humanas e Naturais, cuja polêmica se assenta na tensão entre os conceitos de verdade e verdade científica. Neste sentido, consideram-se como resultados da discussão, a proposta de que o problema fundamental na pesquisa científica, atualmente, consiste em assumir o desafio de ressignificar a visão sobre a fonte do conhecimento e, em consequência, os meios de deliberar sobre o que distingue verdade de verdade científica. Embora não seja uma questão nova, pois segue peregrina desde a sua origem, precisa ser conjecturada sob a emergência de uma nova mentalidade. Desta vez, desestabilizando-se da visão de que a verdade científica estaria ou no sujeito ou no objeto, e sendo a fonte do conhecimento um lugar de onde fala um sujeito que conhece e um objeto que é conhecido, em posição de equidade epistemológica, a verdade poderia estar na relação entre eles e, em consequência, no princípio da complementaridade entre as ciências. Palavras-chave: Ética. Verdade. Método. Ciências Humanas. (shrink)

Background: Although the term “mental pain” is often the subject of expert opinions regarding claims for damages, there is still no standardized questionnaire in the German-speaking area to operationalize this concept. Therefore, the aim of this work is the development and validation of a self-assessment measurement for psychological pain after traumatic events.Methods:A first version of the questionnaire was applied on a sample of the German speaking general population. After performing an item analysis and exploratory factor analysis, the questionnaire was shortened (...) and tested on a second German speaking general population sample. Finally, the newly developed questionnaire was related to the extent of traumatization and already established instruments for the assessment of psychiatric symptom burden, which included the Brief Symptom Inventory-18 and the Post-traumatic-Stress-Scale.Results: The final version of the FESSTE consists of a total of 30 items and covers the subscales “Somatization,” “Depression,” “Intrusive Memories,” “Dissociation” and “Anxiety,” and a total scale “Mental Pain.” Based on the confirmatory factor analysis, it is assumed that the latent factor structure of the FESSTE can be best described as a bifactor-model. The final version shows a satisfactory model fit, high internal consistencies, and strong positive correlations with the BSI-18 and PTSS-10, as well as the extent of traumatic experiences.Discussion: The FESSTE enables an operationalization of mental pain comprising five subscales and one total scale. What is more, the trauma checklist attached to the FESSTE allows for the standardized assessment of potentially traumatic experiences and the corresponding extent of these experiences. The results indicate that the FESSTE is a reliable and valid self-assessment procedure for mental pain, which is suitable for use in research and in expert practice. (shrink)

The aim of this study was to test whether an online video game can be used to investigate planning ability and whether fluid intelligence, objective numeracy, and subjective numeracy are predictive of game performance. Our results demonstrate that fluid intelligence is particularly important, which is in line with previous non-game-based studies that show a relationship between classical planning tests and fluid intelligence. Video games have been previously used for research into cognitive processes and taking them online facilitates data collection (...) on a larger scale. Online video games also afford data collection without the expense and stress of a laboratory environment. For these reasons, using online video games to investigate human cognition is a promising alternative to the classic cognitive paradigms used in laboratories. (shrink)

BackgroundIn recent years, there have been many studies using the Affective Neuroscience Personality Scales (ANPS) to investigate individual differences in primary emotion traits. However, in contrast to other primary emotion traits proposed by Jaak Panksepp and colleagues, there is a considerable lack of research on the LUST (L) dimension – defined as an individual’s capacity to attain sexual desire and satisfaction – a circumstance mainly caused by its exclusion from the ANPS. Therefore, this study aims to take a first (...) step toward the development of a standardized self-rate measurement for the L-disposition. For this purpose, two versions of the L-scales (L-12 and L-5) were developed and evaluated regarding reliability and aspects of validity.Materials and MethodsAfter a pilot study (N= 204; female: 81%) with an initial 20-item pool item reductions were conducted. This led to the construction of a 12-item (L-12) version and a 5-item version (L-5), which were assessed in a second sample consisting of 371 German-speaking healthy adults (58.50% female) aged 18–69 years (M= 28;SD= 9.75). Aspects of external validity were assessed by investigation of correlations with the ANPS, psychiatric symptoms (Brief Symptom Inventory-18), attachment security (Adult Attachment Scales) and personality functioning (Operationalized Psychodynamic Diagnostics Structure Questionnaire). To evaluate structural validity, both L-scales were investigated via confirmatory factor analysis (CFA).ResultsCronbach’s α indicated excellent internal consistency regarding L-12 (α = 0.90), while L-5 showed acceptable reliability (α = 0.82). CFA of a bifactor model of the L-12 indicated excellent model fit. Moreover, an excellent model fit was observed regarding a single factor model of L-5. For both scales small to moderate positive correlations were observed with SEEKING, PLAY, and secure attachment, while they exhibited small to moderate negative correlations with SADNESS, insecure attachment, lower personality functioning, and increased psychiatric symptom load.ConclusionBoth newly developed scales exhibit satisfying psychometric properties, indicating high reliability, good structural validity and plausible correlations with external criteria. Hence, this study poses an important step toward the operationalization of the LUST concept. However, more research is needed in particular with respect to the scale’s external validity and its applicability in clinical populations. (shrink)

The main purpose of this study was to investigate the impact of perceived HR practices on affective commitment and turnover intention. This study explored which HR practices were relatively more important in predicting affective commitment and turnover intention. A total of 302 employees from the United States and 317 from South Korea completed the same questionnaires for assessing the aforementioned relationships. The results illustrated that among perceived HR practices, internal mobility had the most significant association with turnover intention in both (...) the US and South Korea. While internal mobility was a stronger predictor of affective commitment for the US sample, training was the most important variable for predicting affective commitment in South Korea. The second purpose of the study was to examine whether individuals’ positive affect influences the relationship between perceived HR practices and affective commitment and turnover intention. In the US, positive affect moderated the relationship between perceived HR practices and affective commitment and turnover intention such that the relationships were stronger for individuals reporting high positive affect relative to those reporting low positive affect. However, these relationships were not significant in South Korea. We discuss the implications of these results, study limitations, and practical suggestions for future research. (shrink)

We researchers in the humanities and social sciences, similar to the archaeologists but only less literally, are constantly digging through unknown dirt and even uncharted territories in hopes of finding “diamonds.”.

There is considerable confusion regarding the ethical appropriateness of using incentives in research with human subjects. Previous work on determining whether incentives are unethical considers them as a form of undue influence or coercive offer. We understand the ethical issue of undue influence as an issue, not of coercion, but of corruption of judgment. By doing so we find that, for the most part, the use of incentives to recruit and retain research subjects is innocuous. But there are (...) some instances where it is not. Specifically, incentives become problematic when conjoined with the following factors, singly or in combination with one another: where the subject is in a dependency relationship with the researcher, where the risks are particularly high, where the research is degrading, where the participant will only consent if the incentive is relatively large because the participant's aversion to the study is strong, and where the aversion is a principled one. The factors we have identified and the kinds of judgments they require differ substantially from those considered crucial in most previous discussions of the ethics of employing incentives in research with human subjects. (shrink)

In this paper, I discuss the ethical issues related to deception in human subject research in terms of honesty. First, I introduce the background and suggest the conception of honesty that understands it as involving respect for the right not to be deceived (RND). Next, I examine several ways to address the ethical issues of deceptive elements in the human subject research and show why they fail to adequately meet the demand of honesty. I focus on how to (...) make an honest research plan and examine after participation and before participation phases in turn. Then I conclude by suggesting possible strategies to minimizes dishonesty in human subject research. (shrink)

The first Young Researchers in Human–Robot Interaction Workshop, held on March 1, 2006 in Salt Lake City, Utah, provides insight into how to facilitate the establishment of the HRI community. Organized in conjunction with the first annual ACM/IEEE Human Robot Interaction Conference, the NSF-sponsored workshop assembled 15 graduate students from 5 different countries in computer science, psychology, engineering, and the arts to build the HRI community. This report highlights recommendations from discussion sessions, a synopsis of the plenary address, and representative (...) examples of the participants’ presentations. Participants emphasized that HRI is a unique field, requiring knowledge in computing, psychology, and communications despite the differences in the courses, methods, and philosophies across disciplines. The following are needed for future growth in HRI: stable, canonical robotics platforms for research purposes, a multidisciplinary community infrastructure to connect researchers, and a “Berlitz phrasebook” and collected reference materials for helping understand the “other” disciplines. (shrink)

We routinely need to process the identity of many faces around us, and how the brain achieves this is still the subject of much research in cognitive neuroscience. To date, insights on face identity processing have come from both healthy and clinical populations. However, in order to directly compare results across and within participant groups, and across different studies, it is crucial that a standard task is utilised which includes different exemplars (for example, non-face stimuli along with faces), is (...) memory-neutral, and taps into identity recognition across orientation and across viewpoint change. The goal of this study was to test a previously behaviourally tested, optimised face and object identity matching design in a healthy control sample whilst being scanned using fMRI. Specifically, we investigated categorical, orientation, and category-specific orientation effects while participants were focused on identity processing of simultaneously presented exemplar stimuli. Alongside observing category and orientation specific effects in a distributed set of brain regions, we also saw an interaction between stimulus category and orientation in the bilateral fusiform gyrus and bilateral middle occipital gyrus. Generally these clusters showed the pattern of a heightened response to inverted, as opposed to upright faces; and to upright, as opposed to inverted shoes. These results are discussed in relation to previous studies and to potential future research within prosopagnosic individuals. (shrink)

There have been serious controversies in the latter part of the 20th century about the roles and functions of scientific and medical research. In whose interests are medical and biomedical experiments conducted and what are the ethical implications of experimentation on subjects unable to give competent consent? From the decades following the Second World War and calls for the global banning of medical research to the cautious return to the notion that in controlled circumstances, medical research on (...) human subjects is in the best interest of the given individual and the broader population, this book addresses the key implications of experimentation on humans. This volume covers major ethical themes within biomedical research providing historical, philosophical, legal and policy reflections on the literature and specific issues in the field of research on human subjects. Focusing on special populations (the elderly, children, prisoners and the cognitively impaired) it represents the most up-to-date review of the special ethical and legal conflicts that arise with relation to experimentation on subjects from these groups. In the light of current initiatives for law reform pertaining to research ethics the world over, this volume provides a timely, comprehensive and provocative exploration of the field. The volume has been carefully organized to present important philosophical perspectives on organizing principles that should underlie any practical application. A forward-looking historical review of the regulatory regimes of principal jurisdictions, including of the legal controls already in place, provides the backdrop for future policy initiatives. Additionally, in the light of global restructuring of health care systems, several chapters have been devoted to epidemiological research and related issues. (shrink)

This paper was delivered at the 2009 annual conference of the National Council on Ethics in Human Research. It is a reflective piece based on many years of experience with human research ethics and the role of Research Ethics Boards in human participant research.

As innovations in the field of vascular composite allotransplantation (VCA) progress, whole-eye transplantation (WET) is poised to transition from non-human mammalian models to living human recipients. Present treatment options for vision loss are generally considered suboptimal, and attendant concerns ranging from aesthetics and prosthesis maintenance to social stigma may be mitigated by WET. Potential benefits to WET recipients may also include partial vision restoration, psychosocial benefits related to identity and social integration, improvements in physical comfort and function, and reduced surgical (...) risk associated with a biologic eye compared to a prosthesis. Perioperative and postoperative risks of WET are expected to be comparable to those of facial transplantation (FT), and may be similarly mitigated by immunosuppressive protocols, adequate psychosocial support, and a thorough selection process for both the recipient and donor. To minimize the risks associated with immunosuppressive medications, the first attempts in human recipients will likely be performed in conjunction with a FT. If first-in-human attempts at combined FT-WET prove successful and the biologic eye survives, this opens the door for further advancement in the field of vision restoration by means of a viable surgical option. This analysis integrates recent innovations in WET research with the existing discourse on the ethics of surgical innovation and offers preliminary guidance to VCA programs considering undertaking WET in human recipients. (shrink)

Geron recently announced that it had begun enrolling patients in the world's first-in-human clinical trial involving cells derived from human embryonic stem cells (hESCs). This trial raises important questions regarding the future of hESC-based therapies, especially in spinal cord injury (SCI) patients. We address some safety and efficacy concerns with this research, as well as the ethics of fair subject selection. We consider other populations that might be better for this research: chronic complete SCI patients for a safety (...) trial, subacute incomplete SCI patients for an efficacy trial, and perhaps primary progressive multiple sclerosis (MS) patients for a combined safety and efficacy trial. (shrink)

One of the core values to be applied by a body reviewing the ethics of human research is justice. The inclusion of justice as a requirement in the ethical review of human research is relatively recent and its utility had been largely unexamined until debates arose about the conduct of international biomedical research in the late 1990s. The subsequent amendment of authoritative documents in ways that appeared to shift the meaning of conceptions of justice generated a great (...) deal of controversy. Another difficulty has been that both the theory and the substance of justice that are applied by researchers or reviewers can be frequently seen to be subjective. Both the concept of justice — whether distributive or commutative — and what counts as a just distribution or exchange — are given different weight and meanings by different people.In this paper, the origins and more recent debates about the requirement to consider justice as a criterion in the ethical review of human research are traced, relevant conceptions of justice are distinguished, and the manner in which they can be applied meaningfully in the ethical review of all human research is identified.We also explain the way that these concepts are articulated in, and the intent and function of, specific paragraphs of the National Statementon Ethical Conduct in Human Research (2007). The National Statement identifies a number of issues that should be considered when a human research ethics committee is reviewing the justice aspects of an application. We provide guidance to researchers as to how they can show that there is a fair distribution of burdens and benefits in the participant experience and the research outcomes. We also provide practical guidance to researchers on how to think through issues of justice so that they can demonstrate that the design of their research projects meets this ethical requirement. (shrink)

Human space exploration requires massive budgets every fiscal year. Especially under severe financial constraint conditions, governments are forced to justify to society why spending so much tax revenue for human space exploration is worth the cost. The value of human space exploration might be estimated in many ways, but its social significance and cost-effectiveness are two key ways to gauge that worth. Since these measures should be applied country by country because sociopolitical conditions differ in each country and must be (...) taken into consideration, the study on the social significance of human space exploration must take the coloration of a case-study. This paper, focusing on the case of Japan with surveying Japanese literary and national documents as well as taking its sociopolitical conditions into account, examines the social significance of human space exploration. -/- First, we give an overview of the circumstances surrounding Japan's human space exploration program. Derived from the statements of such relevant parties as scholars, journalists, policy makers, and astronauts, this overview indicates that the main concerns about human space exploration in Japan are its social significance and cost-effectiveness (Section 1). Next, an overview of behavioral science—an essential field for human space exploration (referred to in this paper as space behavioral science) that provides support for astronauts—is presented from the perspective of stress research in isolated and confined environments (Section 2). We then give two examples of where such knowledge from space behavioral science research has been applied to terrestrial isolated and confined environments. One is JAXA’s support in 2009 for people who were vulnerable to infection by a new strain of flu and accordingly placed in an isolated and confined facility under the Infectious Disease Law and the Quarantine Law. The other is NASA's support in 2010 for Chilean mine workers who were trapped 700 m underground after a mining accident (Section 3). Based on these case studies, we illustrate the further social utility of such knowledge through a discussion of potential applications in other situations in Japan. Focusing on Japan for its geographical and social features in being an earthquake-prone archipelago and having the world's preeminent aging society, we show that refugees living in evacuation centers and people in an elderly-elderly homecare situation pose socially problematic situations specific to Japan. We then argue that space behavioral scientific knowledge can be applied to support people under these and other isolated and confined environments in various ways (Section 4). Finally, we demonstrate that such an application can be understood as an ethical contribution to Japanese society and that this contribution can be embedded in Japan's space policy (Section 5). We conclude that human space exploration can be a socially significant and cost-effective endeavor that is worthy of tax revenue expenditures because space behavioral science is highly likely to provide unique and useful knowledge to help address various social problems concerning terrestrial isolated and confined environments and support people in sufferings there. (shrink)

No consensus yet exists on how to handle incidental fnd-ings in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging (...) class='Hi'>research. We conclude that researchers have an obligation to address the possibility of discovering IFs in their protocol and communications with the IRB, and in their consent forms and communications with research participants. Researchers should establish a pathway for handling IFs and communicate that to the IRB and research participants. We recommend a pathway and categorize IFs into those that must be disclosed to research participants, those that may be disclosed, and those that should not be disclosed. (shrink)

The conduct of prior ethics review of human research projects helps to protect vulnerable groups or populations from potential negative impacts of research. Contemporary considerations in human research considers the concept of vulnerability in terms of access to research opportunities, impacts on the consenting process, selection bias, and the generalisability of results. Recent work questions the validity of using enumerated lists as a check box approach to protect research participants from exploitation. Through the use of (...) broad categories to treat cohorts of human research participants as homogenous classes and label some participants as vulnerable merely because they are members of a particular class, some ethics reviewers have used the National Statement on Ethical Conduct in Human Research to strip individuals of their “ethical equality”. Labelling people as vulnerable does not help researchers or human research ethics committee members develop an understanding of the complexities of applying the principles of respect and of justice in ethical decision-making. Conversely, defining specific cohorts of research participants as needing nuanced ethical consideration, due to their vulnerable nature, may imply that other population groups need not be considered vulnerable. We contend that this assumption is erroneous. This paper explores the way that human research ethics guidance documents treat vulnerability within the Australian context and draws on contemporary discussion to focus an alternative perspective based on the principles in the National Statement on Ethical Conduct in Human Research for researchers and human research ethics committee members to consider. (shrink)

BackgroundGenome-wide association studies (GWAS) provide a powerful means of identifying genetic variants that play a role in common diseases. Such studies present important ethical challenges. An increasing number of GWAS is taking place in lower income countries and there is a pressing need to identify the particular ethical challenges arising in such contexts. In this paper, we draw upon the experiences of the MalariaGEN Consortium to identify specific ethical issues raised by such research in Africa, Asia and Oceania.DiscussionWe explore (...) ethical issues in three key areas: protecting the interests of research participants, regulation of international collaborative genomics research and protecting the interests of scientists in low income countries. With regard to participants, important challenges are raised about community consultation and consent. Genomics research raises ethical and governance issues about sample export and ownership, about the use of archived samples and about the complexity of reviewing such large international projects. In the context of protecting the interests of researchers in low income countries, we discuss aspects of data sharing and capacity building that need to be considered for sustainable and mutually beneficial collaborations.SummaryMany ethical issues are raised when genomics research is conducted on populations that are characterised by lower average income and literacy levels, such as the populations included in MalariaGEN. It is important that such issues are appropriately addressed in such research. Our experience suggests that the ethical issues in genomics research can best be identified, analysed and addressed where ethics is embedded in the design and implementation of such research projects. (shrink)

Human clinical research has become a huge economic enterprise (Morin et al. 2002; Noah 2002). Because the human subject at the center can be so easily marginalized, many commentators recommend spec...

Over the past decade, the number of clinical trials registered with the Food and Drug Administration has increased dramatically. The business of clinical research has become more diverse, involving academic institutions, clinician-researchers in community settings, pharmaceutical companies, and contract research organizations. This growth has been accompanied by increasing concerns about the ethical conduct of research. Much of this concern has been directed to procedural issues including institutional review board review, data monitoring, and informed consent forms. However, the (...) protection of human subjects cannot be achieved by relying solely on procedural safeguards. There are more nuanced issues related to recruitment and retention of subjects, and to the process of informed consent, that are generated during the interaction between study staff and subjects. It is only through an examination of these relationships that one can more fully define and understand the challenges of protecting subjects in research. (shrink)

Over the past decade, the number of clinical trials registered with the Food and Drug Administration has increased dramatically. The business of clinical research has become more diverse, involving academic institutions, clinician-researchers in community settings, pharmaceutical companies, and contract research organizations. This growth has been accompanied by increasing concerns about the ethical conduct of research. Much of this concern has been directed to procedural issues including institutional review board review, data monitoring, and informed consent forms. However, the (...) protection of human subjects cannot be achieved by relying solely on procedural safeguards. There are more nuanced issues related to recruitment and retention of subjects, and to the process of informed consent, that are generated during the interaction between study staff and subjects. It is only through an examination of these relationships that one can more fully define and understand the challenges of protecting subjects in research. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Human Genome Research in an Interdependent WorldAlexander Morgan Capron (bio)This has been the year of agenda-setting conferences for the ambitious ELSI (ethical, legal and social issues) program of the Human Genome Project (HGP). But of the dozen or more major meetings of this sort held across the country, the one held at the National Institutes of Heakh (NIH) in Bethesda, MD, June 2-4, 1991, was distinctive in several (...) respects.1As its name implies, "Human Genome Research in an Interdependent World" was a global look at the issues raised by gene mapping and sequencing. Unlike previous conferences, however, this meeting looked beyond a comparative analysis of clinical and domestic legal issues, and concentrated on topics that may require responses on a truly international level if they are to be successfully resolved.The meeting's organizers gathered an impressive group of more than seventy participants from fifteen countries, including the first significant contingent of Soviet and Japanese scientists, physicians, and philosophers at an ELSI meeting. In addition to talks by the heads of the genome projects in the Soviet Union, Japan, and the United States, the meeting was keynoted by Dr. James Wyngaarden, director general of the Human Genome Organization (HUGO), and I had the honor of serving as its general chairman.The goal of the meeting was to consider an array of issues that scientists, philosophers, and lawyers from around the world suggested might have international significance, with an eye to deciding three things: (1) Does the issue deserve further attention? (2) Is the issue best addressed in an international or domestic context? and (3) Do structures exist to which the issue can be referred for resolution? In the final sessions, the entire group debated proposed resolutions on the various topics and narrowed the list needing further, intensive exploration.To provide an international framework for this process, the conference [End Page 247] established a Global Steering Committee on Ethical and Social Issues in Genome Research, which will coordinate the efforts of several task forces charged with refining the tentative resolutions adopted by the conference participants on June 4. The task forces are expected to be able to complete work on some topics by the time of the steering committee's first meeting, which was described by one participant as a "check point," probably within the coming year; on other topics, the task forces will provide interim reports and arrange to continue their analysis. Several topics—less complex or more embryonic—were referred directly to the steering committee. On all issues, a major objective will be to ascertain what existing or newly created structure or structures are capable of implementing the group's recommendations and then to monitor the issue to ensure that appropriate implementation is occurring.Issues to be Explored by Task ForcesInsurance and EmploymentWhile individuals may derive medically useful information from the expanded range of genetic tests that will flow from the HGP, they could also be harmed if test results become a basis for discrimination. An area of particular concern at the conference in Bethesda was whether genetic information should be used to decide eligibility for employment or the scope and cost of health and life insurance. The complexity of this issue is increased as barriers to worker migration fall (especially in Europe) and as more firms carry on business internationally. Furthermore, questions arise about the limits of required testing and whether individuals may decline to be informed of the results of tests.The task force will not only gather information on practices and legal standards throughout the world—especially in light of the differences among nations with regard to the linkage of employment and various forms of insurance—but will also examine international anti-discrimination laws as a possible means of supplementing domestic statutes and regulations. As a starting point, the Bethesda meeting agreed on a set of principles for the task force to refine.2ForensicsAlthough their legal status is not fully resolved, DNA tests are being used increasingly in judicial proceedings and civil and criminal investigations as a highly probative means to identify people. Most forensic uses of "DNA fingerprints" are domestic, but international cooperation among investigative bodies... (shrink)

Leveraging firsthand experience, BRAIN-funded investigators conducting intracranial human neuroscience research propose two fundamental ethical commitments: (1) maintaining the integrity of clinical care and (2) ensuring voluntariness. Principles, practices, and uncertainties related to these commitments are offered for future investigation.

Automatic facial expression recognition has now advanced to the point that we are able to apply it to spontaneous expressions. The automated tools enable new research activity in cognitive neuroscience, psychiatry, education, human–machine communication, and human social dynamics. Moreover, automated facial expression analysis enables investigations into facial expression dynamics that were previously intractable by human coding because of the time required to code intensity changes. This article provides an overview on the state of the art in computer vision approaches (...) to facial expression recognition, including methods for characterizing expression dynamics. It then discusses behavioral studies that have employed automatic facial expression recognition to learn new information about the relationships of facial expression to internal state, and reviews the first generation of applications in learning and education that take advantage of the real-time expression signal. (shrink)

The prelims comprise: Introduction Historical Background The Role of Health Research in Promoting Social Justice Justice in Setting Research Priorities Justice Concerns within the Research Context Case Study: The Investigation of Alternative Lead Abatement Procedures by the Kennedy Krieger Institute Conclusion Note References.

This volume provides concise and accessible guidance on how to conduct qualitative research in human geography. It gives particular emphasis to examples drawn from social/cultural geography, perhaps the most vibrant area of inquiry in human geography over the past decade.