AJOB primary research最新文献

{"title":"Ethical Considerations and Risks in Psychiatric Genetics: Preliminary Findings of a Study on Psychiatric Genetic Researchers","authors":"Jessica A. Erickson, M. Cho","doi":"10.1080/21507716.2011.628958","DOIUrl":"https://doi.org/10.1080/21507716.2011.628958","url":null,"abstract":"Background: There are high expectations for genetic research on psychiatric disorders. In addition to anticipating potential benefits, it is important to be aware of risks and ethical concerns. Previous studies have explored attitudes of various stakeholder groups toward psychiatric genetics research and testing. This study focuses on potential risks and ethical concerns as perceived by a hitherto untargeted stakeholder group: psychiatric genetic researchers. Methods: Thirty experts in psychiatric genetic research on schizophrenia, bipolar disorder (BP), and/or major depressive disorder (MDD) were interviewed and asked about their current research. Questions dealt with researchers’ beliefs about potential benefits, harms, and ethical concerns that could result from their work, as well as suggestions to ethically implement their research into clinical practice. Results: Respondents mainly discussed six ethical issues: (1) stigma; (2) prenatal testing and eugenics; (3) ethics of genetics research; (4) lack of genetic risk education among the general public and health care professionals; (5) premature commercialization and direct-to-consumer testing; and (6) lack of criteria for when to utilize psychiatric genetic tests. Bipolar and MDD genetic researchers were somewhat more likely to include moral arguments against psychiatric prenatal testing in their responses than schizophrenia researchers. Non-U.S. respondents were more likely to mention social discrimination concerns than U.S. respondents. Conclusions: Psychiatric genetic researchers’ viewpoints contribute a knowledgeable perspective about the capabilities and risks of psychiatric genetics research. Researchers were concerned that expectations of genetics precede the availability of valid and reliable psychiatric genetic tests. Psychiatric genetic researchers insisted that clinical validity is still a long way away and that making important life decisions based on current data poses a significant danger.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"21 1","pages":"52 - 60"},"PeriodicalIF":0.0,"publicationDate":"2011-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"85053784","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":"Participants' Perceptions of Deep Brain Stimulation Research for Treatment-Resistant Depression: Risks, Benefits, and Therapeutic Misconception.","authors":"Yan Leykin,&nbsp;Paul P Christopher,&nbsp;Paul E Holtzheimer,&nbsp;Paul S Appelbaum,&nbsp;Helen S Mayberg,&nbsp;Sarah H Lisanby,&nbsp;Laura B Dunn","doi":"10.1080/21507716.2011.627579","DOIUrl":"https://doi.org/10.1080/21507716.2011.627579","url":null,"abstract":"<p><strong>Background: </strong>Deep brain stimulation (DBS) for treatment-resistant depression (TRD) is the focus of great interest and numerous studies. Given the state of this research, the risks of DBS, the uncertainty of direct benefits, and the potential for therapeutic misconception (TM), examination of research participants' perspectives is critical to addressing concerns about the adequacy of consent among people with TRD.</p><p><strong>Methods: </strong>Among 31 participants considering DBS studies at two sites, self-report questionnaires were used to examine three dimensions of TM (eight true/false items). Additional Likert-scale items assessed perceptions of risks, potential benefits, and altruistic motivations.</p><p><strong>Results: </strong>Participants correctly identified the surgery itself as the riskiest study procedure, although only four participants rated the surgery as \"high risk.\" Most participants rated the entire DBS study as \"moderate\" or lower risk. Participants rated the likelihood of others benefiting in the future more strongly than they did the likelihood of personal benefit. Participants held positive attitudes toward research, and were moderately altruistic. Nearly two-thirds of the 31 participants (64.5%) answered at least one of the true/false TM items incorrectly.</p><p><strong>Conclusions: </strong>Individuals considering DBS studies for TRD demonstrated reasonable perceptions of risks and benefits, distinguished among procedural risks, and expressed hopes for personal benefit as well as altruism. Findings related to TM were mixed: Participants understood the experimental stage of DBS for depression and endorsed the possibility of no personal benefit, yet there was some evidence for TM. Although these findings are reassuring, investigators must nevertheless remain vigilant about identifying and addressing potential misconceptions.</p>","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"2 4","pages":"33-41"},"PeriodicalIF":0.0,"publicationDate":"2011-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/21507716.2011.627579","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"33880819","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":"Ethical Challenges in Conducting Psychiatric or Mental Health Research in Correctional Settings","authors":"G. Eldridge, Mark E. Johnson, C. Brems, Staci L Corey","doi":"10.1080/21507716.2011.631964","DOIUrl":"https://doi.org/10.1080/21507716.2011.631964","url":null,"abstract":"Background: We explored ethical challenges in conducting psychiatric or mental health research with incarcerated people. Methods: Semistructured interviews were conducted with 87 people who were researchers; institutional review board (IRB) chairs, members, and prisoner representatives; research ethicists; and prison administrators with experience in and knowledge about the conduct of research in correctional settings. NVivo 9.0 was used to conduct grounded theory analysis of responses to the question: “What would you say are the top three ethical challenges to conducting psychiatric or mental health research with incarcerated people?” Results: Key informants identified autonomy and consent, balancing the potential for direct benefit with the risk for harm, and access to and standards of psychiatric care in correctional facilities as the three most important ethical challenges. The characteristics of incarcerated individuals, the nature of correctional systems, and federal regulations for oversight of prisoner research provided the contextual framework for these challenges. Conclusions: Findings from this study provide insights into ethical challenges affecting the conduct of psychiatric and mental health research with incarcerated individuals. Given the potential benefit to incarcerated people from access to participation in research, these ethical challenges should be addressed.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"18 1","pages":"42 - 51"},"PeriodicalIF":0.0,"publicationDate":"2011-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"87886818","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":"Committing to Psychiatric Ethics","authors":"L. Roberts","doi":"10.1080/21507716.2011.630058","DOIUrl":"https://doi.org/10.1080/21507716.2011.630058","url":null,"abstract":"A source of great personal suffering and societal burden, neuropsychiatric disease affects all people throughout the world. One hundred and fifty-one million individuals globally have depression, and nearly half (46%) of the people in the United States will experience an episode of mental illness during the course of their lives (WHO 2010). By 2020, mental illness will be the second leading cause of death and disability (Mitchell 2005), and by 2025, there will be roughly 34 million people living with Alzheimer’s disease and other forms of dementia (Alzheimer’s Society 2011; WHO 2010). Mental illness among young people is prevalent, and suicide is presently the third leading cause of death in adolescence and early adulthood (American Foundation for Suicide Prevention 2011; Centers for Disease Control and Prevention 2011). Co-occurring conditions, such as substance dependence, intellectual disability, and medically complex diseases, are becoming usual rather than rare (Conway et al. 2006; Regier et al. 1990; U.S. Department of Health and Human Services, National Institutes of Health, National Institute on Drug Abuse 2010). All of these patterns are worrisomely heightened in specific subpopulations, such as among indigenous peoples, rural elders and adolescents, the incarcerated, some military personnel and veterans, recent immigrants, and the very old (National Institute of Mental Health 2002; 2004; 2010; Centers for Disease Control and Prevention 2011; Suicide Prevention Task Force 2010). And, by any measure, access to adequate health care services for neuropsychiatric diseases simply does not exist, even in economically established countries (The Commonwealth Fund 2011; World Health Organization 2011). Given the gravity of the consequences of neuropsychiatric disease, it is striking that these illnesses have been relatively neglected, whether considered from the perspective of public policy, science, or health systems. Clinically, neuropsychiatric disease is underrecognized, underdiagnosed, and undertreated (WHO 2010). The shortage of physicianscientists in psychiatry has reached a crisis (Coverdale et al. 2004; Fenton et al. 2004; Roane et al. 2009). From a bioethics point of view, on the other hand, ethical issues in health care and research involving people with neuropsychiatric diseases have been long, widely, and contentiously discussed. Conclusions remain elusive, though, despite the extensive","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"1 1","pages":"1 - 4"},"PeriodicalIF":0.0,"publicationDate":"2011-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"72708693","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":"Overview of Bioethical Issues in Contemporary PTSD Treatment and Research: Considering Priorities for Future Empirical Ethics Investigation","authors":"Shaili Jain, Deborah Nazarian, J. Weitlauf, S. Lindley","doi":"10.1080/21507716.2011.629640","DOIUrl":"https://doi.org/10.1080/21507716.2011.629640","url":null,"abstract":"The last decade has seen a surge in biomedical research advancing the evidence base for the effective clinical management and study of posttraumatic stress disorder (PTSD). The authors review the literature describing ethical issues in conducting PTSD research; controversies over the role of preventive pharmacotherapy for PTSD; and ethical quandaries in the identification, treatment, or empirical investigation of PTSD in postdisaster settings. Findings are synthesized within an ethics framework that utilizes major constructs in the biomedical literature: beneficence/nonmaleficence, informed consent, and autonomy. Gaps and weaknesses in the current evidence base are highlighted. The authors conclude by considering priorities for future empirical ethics investigation in this field.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"20 1","pages":"26 - 32"},"PeriodicalIF":0.0,"publicationDate":"2011-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"84153141","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":"Potential Workplace Discrimination Based on Genetic Predisposition: Views of Workers","authors":"L. Roberts, Liliana Kalogjera Barry, T. Warner","doi":"10.1080/21507716.2011.617717","DOIUrl":"https://doi.org/10.1080/21507716.2011.617717","url":null,"abstract":"Background: The authors sought to better understand attitudes of employees at two settings in which occupational exposures may occur regarding their preferences for disclosure of genetic and nongenetic health information and the potential for discrimination by coworkers, lower performance review, and failure to be promoted on the basis of genetic information. Methods: A new, anonymous 168-question survey was administered online to 570 employees at Sandia National Laboratories and the University of New Mexico Health Sciences Center in 2006. Results: Respondents indicated that they view genetic information as more sensitive than nongenetic health information and that they do not wish to share either type of information with employers for purposes of protecting their health at work. Conclusions: Despite legal advancements intended to prevent genetic discrimination in the workplace, employees remain concerned about the disclosure of genetic information to employers and fear genetic discrimination in the workplace.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"32 1","pages":"1 - 12"},"PeriodicalIF":0.0,"publicationDate":"2011-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89183839","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":"Conscientious Nondisclosure and the Savior Sibling Debate: Does Moral Justification for Nondisclosure Matter?","authors":"Janet Malek","doi":"10.1080/21507716.2011.617027","DOIUrl":"https://doi.org/10.1080/21507716.2011.617027","url":null,"abstract":"In cases in which a suitable donor cannot be found for a child in need of a stem cell transplant, parents of that sick child may have the option to use in vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD) to bring another child into existence who could serve as a donor. In “It’s Time to Reframe the Savior Sibling Debate,” Strong, Jordens, Kerridge, Little, and Ankeny (2011) report the results of interviews with health professionals and parents about the practice of creating such “savior siblings.” The interviews revealed that the health professionals who participated in the study do not generally raise the option of using PGD to create a suitable donor with parents of a sick child. Further, the authors report that the clinicians interviewed identified a number of ethical concerns about the use of this technology as reasons for not disclosing this alternative. The authors critique the ethical reasons for nondisclosure offered by clinicians and argue that none can withstand scrutiny. They then conclude that failing to inform parents about the option of creating a savior sibling is morally problematic because the clinicians’ ethical reasons for withholding this information are not justifiable. In other words, clinicians’ conscientious objection to disclosure of this alternative is not defensible because the reasons offered by clinicians are not good reasons. Thus, they suggest, the focus of the debate over savior siblings should shift: The debate about the morality of the use of this technology should be reframed as a critique of clinicians who fail to disclose the alternative of creating a savior sibling when doing so could save the life of a sick child. This argument raises a thought-provoking question about conscientious objection: Does it matter whether the ethical reasons grounding the objection are justifiable? The structure of the paper makes it clear that Strong and colleagues believe that it does, even though an argument in support of this position is not laid out. However, a strong case can be made that the opposite is, in fact, true. That is, the extent to which a clinician’s ethical reasons for con-","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"80 1","pages":"26 - 27"},"PeriodicalIF":0.0,"publicationDate":"2011-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"83860733","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":"Review of Jeremy Sugarman and Daniel P. Sulmasy, eds., Methods in Medical Ethics (2nd ed.)","authors":"R. Ittenbach, Resmi Gupta","doi":"10.1080/21507716.2011.613442","DOIUrl":"https://doi.org/10.1080/21507716.2011.613442","url":null,"abstract":"The second edition of Methods in Medical Ethics, edited by Jeremy Sugarman and Daniel P. Sulmasy, is remarkably well written and serves as a comprehensive overview of research methods in the field of medical ethics. The book itself is of moderate size and consists of 18 chapters and 353 pages. Five of the 18 chapters contain supporting tables and figures. References cited throughout the text are a blend of historically relevant citations and current research. The book is, for the most part, extremely easy to read, flows nicely from section to section and chapter to chapter, and will serve as an excellent introduction to empirical bioethics for audiences from a wide variety of disciplines. The book is divided into three major sections: Overview, Methods, and Applications. A brief description of the various sections contained in the book follows.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"114 1","pages":"47 - 49"},"PeriodicalIF":0.0,"publicationDate":"2011-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"78197707","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":"It's Time to Reframe the Savior Sibling Debate","authors":"K. Strong, C. Jordens, I. Kerridge, J. Little, R. Ankeny","doi":"10.1080/21507716.2011.616184","DOIUrl":"https://doi.org/10.1080/21507716.2011.616184","url":null,"abstract":"The creation of savior siblings has been the subject of intense ethical debate over the past decade. While ethical concerns might provide clinicians with valid reasons for not providing these clinical services, we suggest that it is more difficult to make a case for physicians not disclosing to the parents of sick children under their care the option of creating a savior sibling. We “test” the ethical objections to savior siblings empirically and conclude that they rely heavily on unsound theoretical or speculative arguments and inappropriately scrutinize parental motives for having children. We contend that empirical evidence makes this moral frame increasingly tendentious, and that debate about savior siblings should be reframed as debate about the ethics of nondisclosure.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"1 1","pages":"13 - 25"},"PeriodicalIF":0.0,"publicationDate":"2011-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"86481211","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":"The Brazilian Ethics Research Review System: An Evaluation from the Perspectives of Institutional Review Boards","authors":"S. F. Bento, E. Hardy, E. M. Hebling, K. S. Pádua, M. Osis","doi":"10.1080/21507716.2011.580493","DOIUrl":"https://doi.org/10.1080/21507716.2011.580493","url":null,"abstract":"Background: In Brazil, all studies involving human beings must be evaluated by an institutional review board (IRB) registered with the National Commission for Ethics in Research (CONEP), the entity responsible for coordinating all IRBs in the country. Methods: In 2007, a broad quantitative evaluation of Brazilian IRBs was carried out, followed by a qualitative component conducted using a semistructured interview technique during the last three months of 2008. Twenty IRBs situated in five geographical regions of the country and located within different social and institutional contexts were selected. Eighty interviews were conducted. Results: In general, the functioning of all the IRBs was similar. Problems were found related to the infrastructure provided for their work and noncompliance with the Resolution 196/96 recommendation that IRB members be given time off from their normal duties for their work with the IRB. The research protocols were usually evaluated by only one or two members. It was mentioned that investigators tended to be resistant to sending their projects for evaluation and to challenging the reports issued. In general, the IRBs did not follow up on the studies that they approved because they lacked the means to be able to do so. Conclusions: Although a large network of IRBs has been created in Brazil, many of these IRBs confront serious difficulties in attempting to comply with the regulations established by the National Health Council (NHC), which may affect the ability of some IRBs to fulfill their role.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"26 1","pages":"28 - 37"},"PeriodicalIF":0.0,"publicationDate":"2011-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"75415151","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}