AJOB primary research最新文献

{"title":"Research Participants' Understanding of and Reactions to Certificates of Confidentiality.","authors":"Laura M Beskow, Devon K Check, Natalie Ammarell","doi":"10.1080/21507716.2013.813596","DOIUrl":"10.1080/21507716.2013.813596","url":null,"abstract":"<p><strong>Background: </strong>Certificates of Confidentiality are intended to facilitate participation in critical public health research by protecting against forced disclosure of identifying data in legal proceedings, but little is known about the effect of Certificate descriptions in consent forms.</p><p><strong>Methods: </strong>To gain preliminary insights, we conducted qualitative interviews with 50 HIV-positive individuals in Durham, North Carolina to explore their subjective understanding of Certificate descriptions and whether their reactions differed based on receiving a standard versus simplified description.</p><p><strong>Results: </strong>Most interviewees were neither reassured nor alarmed by Certificate information, and most said it would not influence their willingness to participate or provide truthful information. However, compared with those receiving the simplified description, more who read the standard description said it raised new concerns, that their likelihood of participating would be lower, and that they might be less forthcoming. Most interviewees said they found the Certificate description clear, but standard-group participants often found particular words and phrases confusing, while simplified-group participants more often questioned the information's substance.</p><p><strong>Conclusions: </strong>Valid informed consent requires comprehension and voluntariness. Our findings highlight the importance of developing consent descriptions of Certificates and other confidentiality protections that are simple and accurate. These qualitative results provide rich detail to inform a larger, quantitative study that would permit further rigorous comparisons.</p>","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"5 1","pages":"12-22"},"PeriodicalIF":0.0,"publicationDate":"2014-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3927918/pdf/nihms506862.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"32148522","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Focusing on Cause or Cure?: Priorities and Stakeholder Presence in Childhood Psychiatry Research.","authors":"Lauren C Milner,&nbsp;Mildred K Cho","doi":"10.1080/21507716.2013.811315","DOIUrl":"https://doi.org/10.1080/21507716.2013.811315","url":null,"abstract":"<p><strong>Background: </strong>Biomedical research is influenced by many factors, including the involvement of stakeholder groups invested in research outcomes. Stakeholder involvement in research efforts raise questions of justice as their specific interests and motivations play a role in directing research resources that ultimately produce knowledge shaping how different conditions (and affected individuals) are understood and treated by society. This issue is highly relevant to child psychiatry research where diagnostic criteria and treatment strategies are often controversial. Biological similarities and stakeholder differences between attention deficit hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) provide an opportunity to explore this issue by comparing research foci and stakeholder involvement in these conditions.</p><p><strong>Methods: </strong>A subset of ADHD and ASD research articles published between 1970-2010 were randomly selected from the PubMed database and coded for research focus, funding source(s), and author-reported conflicts of interest (COIs). Chi-square analyses were performed to identify differences between and within ADHD and ASD research across time.</p><p><strong>Results: </strong>The proportion of ADHD research dedicated to basic, description, and treatment research was roughly similar and remained stable over time, while ASD research showed a significant increase in basic research over the past decade. Government was the primary research funder for both conditions, but for-profit funders were a notable presence in ADHD research, while joint-funding efforts between non-profit and government funders were a notable presence in ASD research. Lastly, COIs were noted more frequently in ADHD than in ASD research.</p><p><strong>Conclusions: </strong>Our study shows significant differences in research foci and funding sources between the conditions, and identifies the specific involvement of for-profit and non-profit groups in ADHD and ASD, respectively. Our findings highlight the relationship between stakeholders outside the research community and research trajectories and suggest that examinations of these relationships must be included in broader considerations of biomedical research ethics.</p>","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"5 1","pages":"44-55"},"PeriodicalIF":0.0,"publicationDate":"2014-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/21507716.2013.811315","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"32260162","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Awareness and Acceptable Practices: IRB and Researcher Reflections on the Havasupai Lawsuit.","authors":"Nanibaa' A Garrison, Mildred K Cho","doi":"10.1080/21507716.2013.770104","DOIUrl":"10.1080/21507716.2013.770104","url":null,"abstract":"<p><strong>Background: </strong>In 2003, Havasupai tribe members in Arizona discovered that their DNA samples, collected for genetic studies on Type II diabetes, had been used for studies on schizophrenia, migration, and inbreeding without their approval. The resulting lawsuit brought by the Havasupai reached a settlement in April 2010 in which tribe members received monetary compensation and the return of DNA samples. In this study, we examine the perceptions of Institutional Review Board (IRB) chairpersons and human genetic researchers about the case and its impact on the practice of research.</p><p><strong>Methods: </strong>Twenty-minute semi-structured interviews were conducted with 26 Institutional Review Board (IRB) chairs and researchers at six top NIH-funded institutions. Participants were questioned about their knowledge and perceived impact of the Havasupai case and their perceptions of informed consent in genetic research studies.</p><p><strong>Results: </strong>We found that most study participants did not perceive that the Havasupai case had a large impact. However, we identified key concerns and opinions of the case, in particular, increased awareness of culturally sensitive issues with informed consent and secondary uses of samples.</p><p><strong>Conclusions: </strong>The results provide a deeper understanding of how informed consent issues are understood by IRB members and human genetic researchers and the implications for research ethics education.</p>","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"4 4","pages":"55-63"},"PeriodicalIF":0.0,"publicationDate":"2013-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3786163/pdf/nihms-438872.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"31776859","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Conflicts in Care for Obstetric Complications in Catholic Hospitals","authors":"L. Freedman, D. Stulberg","doi":"10.1080/21507716.2012.751464","DOIUrl":"https://doi.org/10.1080/21507716.2012.751464","url":null,"abstract":"Background: A recent national survey revealed that over half of obstetrician-gynecologists working in Catholic hospitals have conflicts with religious policies, but the survey did not elucidate the nature of the conflicts. Our qualitative study examines the nature of physician conflicts with religious policies governing obstetrician-gynecologist (ob-gyn) care. Results related to restrictions on the management of obstetric complications are reported here. Methods: In-depth interviews lasting about one hour were conducted with obstetrician-gynecologists throughout the United States. Questions focused on physicians’ general satisfaction with their hospital work settings and specific experiences with religious doctrine-based ob-gyn policies in the various hospitals where they have worked. Results: Conflicts reported here include cases in which Catholic hospital religious policy (Ethical and Religious Directives for Catholic Health Care Services) impacted physicians’ abilities to offer treatment to women experiencing certain obstetric emergencies, such as pregnancy-related health problems, molar pregnancy, miscarriage, or previable premature rupture of membranes (PPROM), because hospital authorities perceived treatment as equivalent to a prohibited abortion. Physicians were contractually obligated to follow doctrine-based policies while practicing in these Catholic hospitals. Conclusions: For some physicians, their hospital's prohibition on abortion initially seemed congruent with their own principles, but when applied to cases in which patients were already losing a desired pregnancy and/or the patient's health was at risk, some physicians found the institutional restrictions on care to be unacceptable.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"45 1","pages":"1 - 10"},"PeriodicalIF":0.0,"publicationDate":"2013-08-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"82479492","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"What Are Features of a Good Deliberation Process in Cases of Medically and Ethically Complex Pregnancies?","authors":"C. Rentmeester","doi":"10.1080/21507716.2012.756076","DOIUrl":"https://doi.org/10.1080/21507716.2012.756076","url":null,"abstract":"Freedman and Stulberg’s (2013) “Conflicts in Care for Obstetric Complications in Catholic Hospitals” raises several interesting, important, and complex clinical and organizational ethics issues worthy of further exploration. I launch initial inquiry and offer suggestions for future scholarship and research into some of the topics inspired by the physician-subjects’ self-reports about the care they delivered and the deliberations about medically and ethically complex cases in which they were involved.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"24 1","pages":"11 - 13"},"PeriodicalIF":0.0,"publicationDate":"2013-08-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"73925514","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Moral Stress, Moral Practice, and Ethical Climate in Community-Based Drug-Use Research: Views From the Front Line","authors":"C. Fisher, Gala True, L. Alexander, A. Fried","doi":"10.1080/21507716.2013.806969","DOIUrl":"https://doi.org/10.1080/21507716.2013.806969","url":null,"abstract":"Background: The role of front-line researchers, those whose responsibilities include face-to-face contact with participants, is critical to ensuring the responsible conduct of community-based drug use research. To date, there has been little empirical examination of how front-line researchers perceive the effectiveness of ethical procedures in their real-world application and the moral stress they may experience when adherence to scientific procedures appears to conflict with participant protections. Methods: This study represents a first step in applying psychological science to examine the work-related attitudes, ethics climate, and moral dilemmas experienced by a national sample of 275 front-line staff members whose responsibilities include face-to-face interaction with participants in community-based drug-use research. Using an anonymous Web-based survey we psychometrically evaluated and examined relationships among six new scales tapping moral stress (frustration in response to perceived barriers to conducting research in a morally appropriate manner); organizational ethics climate; staff support; moral practice dilemmas (perceived conflicts between scientific integrity and participant welfare); research commitment; and research mistrust. Results: As predicted, front-line researchers who evidence a strong commitment to their role in the research process and who perceive their organizations as committed to research ethics and staff support experienced lower levels of moral stress. Front-line researchers who were distrustful of the research enterprise and frequently grappled with moral practice dilemmas reported higher levels of moral stress. Conclusion: Applying psychometrically reliable scales to empirically examine research ethics challenges can illuminate specific threats to scientific integrity and human subjects protections encountered by front-line staff and suggest organizational strategies for reducing moral stress and enhancing the responsible conduct of research.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"110 1","pages":"27 - 38"},"PeriodicalIF":0.0,"publicationDate":"2013-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"87657365","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding What Participants in Empirical Bioethical Studies Mean: Historical Cautions From William James and Ludwig Wittgenstein","authors":"K. Weinfurt","doi":"10.1080/21507716.2013.807893","DOIUrl":"https://doi.org/10.1080/21507716.2013.807893","url":null,"abstract":"Methods from psychology are informing much empirical research in bioethics by helping to understand the thoughts, feelings, and beliefs of people as they relate to a variety of bioethical issues. This can lead to improvements in practice or policy only if the subjective mental states under study have been characterized accurately. In this article, I describe two cautions from the history of psychology concerning the accurate characterization of mental states that have significant implications for how we elicit and interpret data in empirical bioethical studies. Both make reference to tendencies of mind that can be difficult to combat and that are the cause of other more specific methodological errors. The first historical caution, William James's “psychologist's fallacy,” warns against substituting the ethicist/researcher's point of view with that of the person under study. Failure to appreciate this essentially egocentric bias can result in asking people to report on things (e.g., probability of benefit from an experimental therapy) that are not a part of the person's experience in the same way they are a part of the researcher's worldview. The responses the person provides in such cases do not provide good information about his or her experience and so cannot be used to guide sound policy. The second historical caution is Wittgenstein's discursive perspective, which urges us to interpret the meaning of things said by a person in a research study by examining the function each utterance serves for the person. For example, one should avoid assuming that people respond to queries about understanding by simply describing their understanding. Instead, research participants might provide responses to achieve other goals, such as establishing a desired attitude in themselves. I suggest that both cautions can be addressed through careful qualitative investigation at the beginning of a research project.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"26 1","pages":"49 - 54"},"PeriodicalIF":0.0,"publicationDate":"2013-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"80643384","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding the Severity of Wrongdoing in Health Care Delivery and Research: Lessons Learned From a Historiometric Study of 100 Cases","authors":"J. DuBois, E. Anderson, J. Chibnall","doi":"10.1080/21507716.2013.807892","DOIUrl":"https://doi.org/10.1080/21507716.2013.807892","url":null,"abstract":"Background: Wrongdoing among physicians and researchers causes myriad problems for patients and research participants. While many articles have been published on professional wrongdoing, our literature review found no studies that examined the rich contextual details of large sets of historical cases of wrongdoing. Methods: We examined 100 cases of wrongdoing in health care delivery and research using historiometric methods, which involve the statistical description and analysis of coded historical narratives. We used maximum-variation, criterion-based sampling to identify cases involving 29 kinds of wrongdoing contained in a taxonomy of wrongdoing developed for the project. We coded the presence of a variety of environmental and wrongdoer variables and rated the severity of wrongdoing found in each case. This approach enabled us to (a) produce rich descriptions of variables characterizing cases, (b) identify factors influencing the severity of wrongdoing, and (c) test the hypothesis that professional wrongdoing is a unified, relatively homogeneous phenomenon such as “organizational deviance.” Results: Some variables were consistently found across cases (e.g., wrongdoers were male and cases lasted more than 2 years), and some variables were consistently absent across cases (e.g., cases did not involve wrongdoers who were mistreated by institutions or penalized for doing what is right). However, we also found that some variables associated with wrongdoing in research (such as ambiguous legal and ethical norms) differ from those associated with wrongdoing in health care delivery (such as wrongdoers with a significant history of professional misbehavior). Conclusions: Earlier intervention from colleagues might help prevent the pattern we observed of repeated wrongdoing across multiple years. While some variables characterize the vast majority of highly publicized cases of wrongdoing in health care delivery and research—regardless of the kind of wrongdoing—it is important to examine and compare sets of relatively homogeneous cases in order to identify factors associated with wrongdoing.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"3 1","pages":"39 - 48"},"PeriodicalIF":0.0,"publicationDate":"2013-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"90408894","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Contributions of Psychological Science to Empirical Bioethics","authors":"Victoria A. Miller","doi":"10.1080/21507716.2013.806970","DOIUrl":"https://doi.org/10.1080/21507716.2013.806970","url":null,"abstract":"Multiple disciplines can be brought to bear on the investigation of ethical issues in medicine (Sulmasy and Sugarman 2010). One way in which a multidisciplinary approach can be useful is through the application of theories and concepts outside one’s own field of study to ethical questions. For example, theories of cognitive and psychosocial development drawn from psychology have been used to understand when and how children and adolescents become capable of making their own health care decisions (Steinberg and Cauffman 1996; Weithorn and Campbell 1982). A second way is through the use of different methods, some of which are discipline specific or cut across multiple disciplines, to understand different aspects of an ethical question. An example is the use of discourse analysis, from the field of linguistics, to explore the way in which characteristics of consent discussions or consent documents influence participants’ understanding (Ilic et al. Forthcoming; Ness, Kiesling, and Lidz 2009). A multidisciplinary approach to ethical problem solving, both clinically and in the research arena, is important because it ensures that the problem is examined from several different points of view and yields solutions that are relevant and coherent to a broad audience (Miller et al. 2009; Streiner and Norman 1995; Sulmasy and Sugarman 2010). Psychological insights into how people think, make decisions, communicate, and behave are closely linked to the ethical dilemmas that arise in medical settings. The history of psychology as a discipline has its roots in philosophy. Philosophers with strong influences on modern psychological science include Rene Descartes, John Locke, Immanuel Kant, and John Stuart Mill, all of whom were interested in the nature of the mind, learning, and experience (Lundin 1996). Wilhelm Wundt, originally a philosopher, was the first to establish psychology as a discipline separate from philosophy and biology in the late 19th century, applying scientific methods to the study of human thought and behavior (Lundin 1996). Since that time, the fields of psychology and philosophy have been interested in many of the same questions, and psychological theories and methods","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"22 1","pages":"1 - 3"},"PeriodicalIF":0.0,"publicationDate":"2013-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"88311257","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Effects of Findings of Scientific Misconduct on Postdoctoral Trainees","authors":"B. Redman, J. Merz","doi":"10.1080/21507716.2013.804010","DOIUrl":"https://doi.org/10.1080/21507716.2013.804010","url":null,"abstract":"Background: In an earlier study, we described the impact of formal misconduct determinations on established scientists’ careers, showing that many retained scientific careers, and more than half (51%) continued to publish at least one paper per year after their cases were decided. Here, we extend our study to examine the ramifications of final misconduct findings by the Office of Research Integrity (ORI) on the careers of postdoctoral fellows. Methods: We tracked publication histories and attempted to track down all postdoctoral trainees found by ORI to have committed misconduct, and attempted to interview them about their experiences. Results: Trainees found to have committed misconduct between 1993 and 2007 whom we could trace were less likely to continue to publish than more established scientists, with only 11% publishing more than one paper per year after their misconduct determinations. Our assessment is constrained by our inability to reliably trace postdoctoral fellows, reflecting the fact that a majority of U.S. postdocs are from other countries. Conclusions: Because of concern about the fairness of severe punishment of trainees, the U.S. Office of Research Integrity appears to be shifting from funding debarments toward requiring education, mentorship, and oversight for trainees, which may enhance the likelihood of rehabilitation. Whether this policy succeeds remains to be seen.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"24 1","pages":"64 - 67"},"PeriodicalIF":0.0,"publicationDate":"2013-05-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89100887","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}