AJOB primary research最新文献

{"title":"Barriers to Considering Ethical and Societal Implications of Research: Perceptions of Life Scientists.","authors":"Jennifer Blair McCormick,&nbsp;Angie M Boyce,&nbsp;Jennifer M Ladd,&nbsp;Mildred Cho","doi":"10.1080/21507716.2012.680651","DOIUrl":"https://doi.org/10.1080/21507716.2012.680651","url":null,"abstract":"<p><p>BACKGROUND: As part of an empirical study investigating how life scientists think about ethical and societal implications of their work, and about life science research in general, we sought to elucidate barriers that scientists might face in considering such implications. METHOD: Between 2005 and 2007, we conducted a study consisting of phone interviews, focus groups, and a national survey of life scientists at biomedical research institutions. The study population included graduate students, postdoctoral fellows, faculty, clinical instructors, and research staff. We analyzed data through qualitative and quantitative methods. RESULTS: In analyzing the data, we found that life scientists do, in fact, face barriers to considering ethical and societal implications of research. We categorized these barriers as falling into four broad domains: (1) lack of awareness of ethical and societal implications; (2) lack of relevance of such concerns to their specific research; (3) self-confidence in their ability to resolve such concerns; and (4) aspects of the daily practice of science itself. CONCLUSIONS: Life science researchers experience elements inherent in their training and in the conduct of science as barriers to thinking about ethical and societal implications related to their work. These findings suggest areas in which research ethics educators, bioethicists, and the scientific community can focus their efforts to improve social and ethical accountability in research.</p>","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"3 3","pages":"40-50"},"PeriodicalIF":0.0,"publicationDate":"2012-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/21507716.2012.680651","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"30813647","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":"Added Stakeholders, Added Value(s) to the Cognitive Enhancement Debate: Are Academic Discourse and Professional Policies Sidestepping Values of Stakeholders?","authors":"C. Forlini, E. Racine","doi":"10.1080/21507716.2011.645116","DOIUrl":"https://doi.org/10.1080/21507716.2011.645116","url":null,"abstract":"Background: The debate on the nonmedical use of prescription medication for the enhancement of cognitive function (e.g., attention, memory, concentration, vigilance), accompanied by heated public discussions in the media, has spurred the interest of scholars and the public. Methods: In this article, we present qualitative data from a focus-group study with university students, parents, and health care providers. We identified ethical, social, and legal issues related to the nonmedical use of methylphenidate for cognitive enhancement (CE) and closely examined the positions taken on these issues and their supporting arguments. Results: The ethical, social, and legal issues we identified (e.g., authenticity, cheating) were similar to those identified in a previous discourse analysis of the bioethics literature but indicate the existence of moderately and highly contentious issues as well as factors and values underlying these issues. The model we generated from these findings shows how interplay between values (e.g., effort and honesty) and external factors (e.g., regulation and access) may lie at the root of contentious ethical issues in CE. Conclusions: Our discussion points to an unsuspected complexity in understanding the values of stakeholders and an unclear relationship to academic discourse and professional societies. We propose deliberative or other democratic processes as a way to recognize and incorporate the complexity of the CE debate.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"174 1","pages":"33 - 47"},"PeriodicalIF":0.0,"publicationDate":"2012-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"73222869","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":"Empirical Research on Attitudes Toward Cognitive Enhancement Is Essential to Inform Policy and Practice Guidelines","authors":"J. Lucke","doi":"10.1080/21507716.2011.645268","DOIUrl":"https://doi.org/10.1080/21507716.2011.645268","url":null,"abstract":"Two articles in this issue examine public attitudes toward cognitive enhancement. Forlini and Racine present qualitative data from a focus group study with university students, parents, and health care providers in Canada (Forlini and Racine 2012). Franke and colleagues (Franke et al. 2012) report quantitative data from self-report questionnaires completed by German high school and undergraduate university students. These two studies originate from different continents and use different methods, but they both demonstrate the complexity of attitudes toward cognitive enhancement and raise further questions that should be explored to better inform policy and practice guidelines.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"25 1","pages":"58 - 60"},"PeriodicalIF":0.0,"publicationDate":"2012-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"78002933","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":"Funding and Forums for ELSI Research: Who (or What) is Setting the Agenda?","authors":"Clair Morrissey, Rebecca L Walker","doi":"10.1080/21507716.2012.678550","DOIUrl":"10.1080/21507716.2012.678550","url":null,"abstract":"<p><p>BACKGROUND: Discussion of the influence of money on bioethics research seems particularly salient in the context of research on the ethical, legal and social implications (ELSI) of human genomics, as this research may be financially supported by the ELSI Research Program. Empirical evidence regarding the funding of ELSI research and where such research is disseminated, in relation to the specific topics of the research and methods used, can help to further discussions regarding the appropriate influence of specific institutions and institutional contexts on ELSI and other bioethics research agendas. METHODS: We reviewed 642 ELSI publications (appearing between 2003-2008) for reported sources of funding, forum for dissemination, empirical and non-empirical methods, and topic of investigation. RESULTS: Most ELSI research is independent of direct grant-based funding sources; 66% reported no such sources of funding. The National Human Genome Research Institute (NHGRI) is the most dominant source of funding; 16% of publications acknowledged at least one source of NHGRI grant funding. Funding is acknowledged more frequently in empirical than non-empirical publications, and more frequently in publications in public health journals than in any other ELSI research dissemination forums. Dominant research topics vary by publication forum and by reported funding. CONCLUSIONS: ELSI research is surprisingly independent of direct grant-based funding, yet correlations are apparent between this type of funding and publication placement, topics addressed, and methods used, implying a not insignificant influence on ELSI research agenda-setting. However, given the relatively low percentage of publications acknowledging external grant-based funding, as well as other significant correlations between publication placement and topics addressed, additional institutional contexts, perhaps related to professional advancement or valuation, may shape research agendas in ways that potentially exceed the direct influences of grant-based funding in this area. In some cases, grant-based funding may actually counter other potentially problematic institutional influences.</p>","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"3 3","pages":"51-60"},"PeriodicalIF":0.0,"publicationDate":"2012-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3413296/pdf/nihms387328.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"30830626","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":"Exploring the Ethics of Observational Research: The Case of an HIV Study in Tanzania.","authors":"Alison Norris, Ashley Jackson, Kaveh Khoshnood","doi":"10.1080/21507716.2012.714836","DOIUrl":"10.1080/21507716.2012.714836","url":null,"abstract":"<p><strong>Background: </strong>Observational studies have generally been viewed as incurring minimal risk to participants, resulting in fewer ethical obligations for investigators than intervention studies. In 2004, the lead author (AN) carried out an observational study measuring sexual behavior and the prevalence of HIV, syphilis, and herpes simplex virus type 2 (HSV-2), among Tanzanian agricultural plantation residents (results reported elsewhere). This article uses an ethical lens to consider the consequences of the observational study and explore what, if any, effects it had on participants and their community.</p><p><strong>Methods: </strong>Using a case study approach, we critically examine three core principles of research ethics-respect for persons/autonomy; beneficence/nonmaleficence; and distributive justice-as manifested in the 2004 observational study. We base our findings on three sources: discussions with plantation residents following presentations of observational research findings; in-depth interviews with key informants; and researcher observations.</p><p><strong>Results: </strong>The observational research team was found to have ensured confidentiality and noncoercive recruitment. Ironically, maintenance of confidentiality and voluntary participation led some participants to doubt study results. Receiving HIV test results was important for participants and contributed to changing community norms about HIV testing.</p><p><strong>Conclusions: </strong>Observational studies may act like <i>de facto</i> intervention studies and thus incur obligations similar to those of intervention studies. We found that ensuring respect for persons may have compromised the principles of beneficence and distributive justice. While in theory these three ethical principles have equal moral force, in practice, researchers may have to prioritize one over the others. Careful community engagement is necessary to promote well-considered ethical decisions.</p>","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"3 4","pages":"30-39"},"PeriodicalIF":0.0,"publicationDate":"2012-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3779918/pdf/nihms-504270.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"31761378","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":"Attitudes Toward Cognitive Enhancement in Users and Nonusers of Stimulants for Cognitive Enhancement: A Pilot Study","authors":"A. Franke, C. Bonertz, M. Christmann, S. Engeser, K. Lieb","doi":"10.1080/21507716.2011.608411","DOIUrl":"https://doi.org/10.1080/21507716.2011.608411","url":null,"abstract":"Background: The goal of this pilot study was to assess attitudes toward cognitive enhancement (CE) in users and nonusers of prescription or illicit stimulants for CE. Methods: Self-rating questionnaires were used to assess general attitudes toward CE in a sample of 1,035 high school students and 512 undergraduate university students in Germany. Attitudes were also assessed in a subgroup of 49 users of prescription and/or illicit stimulants and compared to the remaining group of nonusers. Results: When asked about the conditions under which participants would consider the use of substances for CE, more than 80% of participants answered that such substances must not lead to long-term damage or addiction if they were to consider using them, while 95% (more often females than males) thought that currently available substances would lead to addiction. Only 16% would not use cognitive enhancers under any condition. A minority of participants (more males than females) stated that students with low academic performance (26%), pilots (21.6%), or physicians (18.9%) should be allowed to use cognitive enhancers; 50.4% would support the use among the cognitively impaired elderly. Compared to nonusers, users were significantly more likely to (1) believe that it was fair for others to use cognitive enhancers, (2) allow the use in students with lower academic performance, and (3) use cognitive enhancers if others did. Reported substance use was associated with higher achievement motivation and with a stronger external locus of control. Conclusions: The disposition to use cognitive enhancers among high school and university students in Germany is high, if substances are safe. However, fear of addiction and doubts about fairness lead most participants to abstain from stimulant use for CE.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"32 1","pages":"48 - 57"},"PeriodicalIF":0.0,"publicationDate":"2012-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"79750095","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":"Influences on Decision Making Identified by Parents of Children Receiving Pediatric Palliative Care.","authors":"Karen W Carroll,&nbsp;Cynthia J Mollen,&nbsp;Sarah Aldridge,&nbsp;Kari R Hexem,&nbsp;Chris Feudtner","doi":"10.1080/21507716.2011.638019","DOIUrl":"https://doi.org/10.1080/21507716.2011.638019","url":null,"abstract":"<p><strong>Background: </strong>Parental decision making is a critical component in the provision of palliative and end-of-life care, yet factors that parents perceive as influencing this process, when they are making decisions for their children, have not been well characterized.</p><p><strong>Methods: </strong>As part of a mixed-methods cohort study, we interviewed 73 parents of 50 pediatric patients who were referred to the hospital's pediatric palliative care service. The semistructured interviews focused on \"decision making for your child\"; the interviews were recorded and transcribed. A random sample (n = 13) was first coded and analyzed for core themes, and these themes were then cross-validated with a second random sample (n = 3) of interviews.</p><p><strong>Results: </strong>Four dominant interrelated themes permeated parents' discussions about the decisions they were making for their children and the process of decision making. First, Orientation and Direction (including the subthemes of Goals and Hopes, Spirituality and Meaning, and Purposeful Effort) connotes the parents' effort to establish and clarify the broad context of decision making. Second, Defining What Is Good for the Child (including the subthemes of Quality of Life and Suffering, and Normalcy and Normalization) conveys how the parents posed questions and pondered what decisions would be in the child's best interests. Third, the entwined theme of Relationships, Communication, and Support reflects how parents reported the social and interactive nature of decision making. Fourth, the theme of Feelings and Personal Accountability focuses inward as parents report efforts to deal with their emotional responses and self-judgments.</p><p><strong>Conclusions: </strong>Parents report grappling with several influences upon their decision-making processes that extend well beyond the standard discussions of medical information exchanges and the evaluation of risks and benefits. Decision support for these parents should account for these diverse influences.</p>","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"3 1","pages":"1-7"},"PeriodicalIF":0.0,"publicationDate":"2012-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/21507716.2011.638019","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"34257158","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":"What are our AIMs? Interdisciplinary Perspectives on the Use of Ancestry Estimation in Disease Research.","authors":"Joon-Ho Yu, Janelle S Taylor, Karen L Edwards, Stephanie M Fullerton","doi":"10.1080/21507716.2012.717339","DOIUrl":"10.1080/21507716.2012.717339","url":null,"abstract":"<p><strong>Background: </strong>Ancestry estimation serves as a tool to identify genetic contributions to disease but may contribute to racial discrimination and stigmatization. We sought to understand user perspectives on the benefits and harms of ancestry estimation to inform research practice and contribute to debates about the use of race and ancestry in genetics.</p><p><strong>Methods: </strong>Key informant interviews with 22 scientists were conducted to examine scientists' understandings of the benefits and harms of ancestry estimation.</p><p><strong>Results: </strong>Three main perspectives were observed among key informant scientists who use ancestry estimation in genetic epidemiology research. Population geneticists self identified as educators who controlled the meaning and application of ancestry estimation in research. Clinician-researchers were optimistic about the application of ancestry estimation to individualized risk assessment and personalized medicine. Epidemiologists remained ambivalent toward ancestry estimation and suggested a continued role for race in their research.</p><p><strong>Conclusions: </strong>We observed an imbalance of control over the meaning and application of ancestry estimation among disciplines that may result in unwarranted or premature translation of ancestry estimation into medicine and public health. Differences in disciplinary perspectives need to be addressed if translational benefits of genetic ancestry estimation are to be realized.</p>","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"3 4","pages":"87-97"},"PeriodicalIF":0.0,"publicationDate":"2012-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4238888/pdf/nihms592671.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"32833474","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":"Thoughts on the Future: The Perspectives of Elderly People with Early-Stage Alzheimer's Disease and the Implications for Advance Care Planning","authors":"M. D. de Boer, R. Dröes, C. Jonker, J. Eefsting, C. Hertogh","doi":"10.1080/21507716.2011.636784","DOIUrl":"https://doi.org/10.1080/21507716.2011.636784","url":null,"abstract":"Background: Early diagnosis in dementia is promoted to allow patients to engage in advance care planning (ACP) while still competent to do so and thereby to extend their autonomy into futures in which they lack decision-making capacity. However, engagement of people with dementia in ACP lags behind. The aim of this study was to investigate the thoughts of people with early-stage Alzheimer's disease (AD) with regard to future care and treatment and the implications for ACP. Methods: A qualitative study using explorative semistructured interviews was conducted with 24 individuals diagnosed with early-stage AD. Results: Participants were found to be very capable of sharing their experiences, often becoming more open and talkative in the course of the interview. For participants, thinking about the future involved an ongoing process of balancing feelings of fear and hope, but the overall tendency among this group was to try to live one day at a time and avoid worrying about the future. Conclusions: Although ACP is considered to be a key element of high-quality palliative and end-of-life care, engagement in ACP by people with early-stage AD on their own initiative is limited. Additional interventions are essential in order to stimulate and support people with early-stage AD to initiate actions with regard to ACP. The development of alternative models for ACP in dementia care is recommended. However, the advisability of ACP in early-stage AD is not without dispute. Ethical issues, such as whether steering people toward ACP is justified, should be addressed in further research and the role of advance directives needs to be reconsidered.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"8 1","pages":"14 - 22"},"PeriodicalIF":0.0,"publicationDate":"2012-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"75480041","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":"Medical Decisions Made by Surrogates for Persons with Advanced Dementia within Weeks or Months of Death.","authors":"Peter V Rabins, Kathryn L Hicks, Betty S Black","doi":"10.1080/21507716.2011.627580","DOIUrl":"10.1080/21507716.2011.627580","url":null,"abstract":"<p><strong>Background: </strong>Surrogates make all medical decisions for persons with advanced dementia. This study describes the types of medical decisions that surrogates faced prior to the person's death and their perceived difficulty and satisfaction with those decisions.</p><p><strong>Methods: </strong>Seventy-six surrogates of nursing home residents meeting hospice criteria for dementia were followed longitudinally and interviewed following the death of the person with dementia.</p><p><strong>Results: </strong>The most common decisions made were related to transfer to hospital, diagnostic testing, and placement of a feeding tube. Surrogates perceived decisions to not treat to be more difficult than decisions to treat.</p><p><strong>Conclusions: </strong>Surrogates frequently are faced with making medical decisions for persons with advanced dementia near the end of life. Clinicians can help surrogates by acknowledging the difficulty of making decisions to not treat.</p>","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"2 4","pages":"61-65"},"PeriodicalIF":0.0,"publicationDate":"2011-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4013746/pdf/nihms-333476.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"32334435","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}