AJOB primary research最新文献

{"title":"Ethical Discourse about the Modification of Food for Therapeutic Purposes: How Patients with Gastrointestinal Diseases View the Good, the Bad, and the Healthy.","authors":"Krista L Harrison,&nbsp;Gail Geller,&nbsp;Patricia Marshall,&nbsp;Jon Tilburt,&nbsp;Marybeth Mercer,&nbsp;Margaret A Brinich,&nbsp;Janelle Highland,&nbsp;Ruth M Farrell,&nbsp;Richard R Sharp","doi":"10.1080/21507716.2012.662574","DOIUrl":"https://doi.org/10.1080/21507716.2012.662574","url":null,"abstract":"<p><p>BACKGROUND: Researchers have the potential to utilize genetic modification (GM) technologies to create a hybrid of \"food\" and \"medicine\" that may challenge traditional understandings of what is \"natural\". Moral and ethical concerns are likely to arise in any discussion of these therapeutic foods and will affect the integration of products into clinical care and daily life. This study examined how patients with chronic gastrointestinal (GI) diseases view probiotics as future bioengineered therapeutic foods. METHODS: A multi-site qualitative study consisting of focus groups with chronic GI diseases was conducted at Cleveland Clinic, Mayo Clinic, and Johns Hopkins University RESULTS: We conducted twenty-two focus groups with 136 patients with major GI diseases between March and August 2009. GI patients associated the term \"natural\" with concepts of diminished risk and morally \"good\"; conversely, patients associated the term \"unnatural\" with things that are \"risky,\" \"foreign\", and morally \"bad\". Readily available unmodified probiotics were more commonly described as \"natural\" while genetically modified probiotics were more commonly labeled as \"unnatural\" and \"risky\". However, patients acknowledged that not all natural products are safe, nor are unnatural products always harmful. CONCLUSIONS: If GI patient perspectives are indicative of public perceptions of therapeutic foods, our findings suggest that the potential benefits and risks of clinical and public health initiatives employing therapeutic foods will be understood in moralistic terms. Bioethicists and others should be sensitive to the implicit normative appeals that are often embedded in the language of what is \"natural\" and \"unnatural\".</p>","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"3 3","pages":"12-20"},"PeriodicalIF":0.0,"publicationDate":"2012-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/21507716.2012.662574","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"30746808","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":"ELSI Research and Genetics: A Co-Evolution","authors":"M. Cho","doi":"10.1080/21507716.2012.688786","DOIUrl":"https://doi.org/10.1080/21507716.2012.688786","url":null,"abstract":"In April 2011, the Center for Genomics and Society at the University of North Carolina-Chapel Hill hosted a conference entitled “Exploring the ELSI Universe.”1 Although “ELSI,” the acronym for “ethical, legal, and social implications” used primarily in the US, does not spell out the source of these implications, such specification is now unnecessary. ELSI has taken on a life of its own that can be understood in terms of its origins in the Human Genome Project twenty-one years ago, as well as its generalization to any biologically-related science or technology. ELSI has inspired similar research programs, including GE3LS (Genomics-Related Ethical, Environmental, Economic, Legal and Social Research) in Canada and ELSA (Ethical, Legal and Social Aspects of the Life Sciences and Technology) in the EU. The organizers of this conference redefined the acronym in ways that reflect the evolution of the concept: Expanding, Linking, Specializing, and Internationalizing. Expanding—how has ELSI research expanded? Linking—how does ELSI relate to other areas of science and technology? Specializing—which areas of ELSI research would benefit from a deeper focus? Internationalizing—how should ELSI address global and local issues? This issue of AJOB Primary Research reports some of the work presented at this conference and reflects the maturation of ELSI as a field as well as the maturation of genetic research. Trinidad and colleagues (2012) and Brothers and Clayton (2012) both study the time-honored issue of informed consent for genomic research. However, these studies represent a shift from ELSI research operating independently from the scientific or clinical context and toward a concurrent and coordinated approach in which ELSI research is more proactively targeted at answering specific policy questions raised by research projects or their clinical applications. This approach requires close collaboration with scientific researchers for logistical coordination and to assure that the ELSI studies are relevant and conceptually on target. These studies, the results of which were both obtained from","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"17 1","pages":"1 - 2"},"PeriodicalIF":0.0,"publicationDate":"2012-06-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"76335390","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 in God's Hands”: The Attitudes of Elderly Muslim Women in Antwerp, Belgium, Toward Active Termination of Life","authors":"G. Baeke, J. Wils, B. Broeckaert","doi":"10.1080/21507716.2011.653471","DOIUrl":"https://doi.org/10.1080/21507716.2011.653471","url":null,"abstract":"Background: The influence of Islam is increasing in Western societies due to different migration waves. Migrants originating from Islamic countries are confronted with a dominant right to self-determination mentality in the West, which affects attitudes regarding a number of issues, such as those surrounding death. Methods: In-depth interviews were conducted with 30 first-generation Muslim women who migrated to Belgium from Turkey and Morocco between the early 1960s and early 1980s, with the aim of eliciting their attitudes toward active termination of life. Results: We found a huge contrast with the secular right-to-die discourse, which is quite dominant in the West. Among the participants, we elicited a predominantly negative attitude toward (non)voluntary euthanasia and assisted suicide. We observed that participants displayed a theological line of reasoning when dealing with these bioethical issues similar to the one offered in normative Islamic guidance (e.g., fatwas). Conclusions: The study shows an important and complex impact of religion, specifically one's image of God, on attitudes toward active termination of life, and points to the danger of adopting a simplistic and non-nuanced approach to Islam.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"43 1","pages":"36 - 47"},"PeriodicalIF":0.0,"publicationDate":"2012-02-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"90973368","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":"Primary Care Patients’ Views, Attitudes, and Decision-Making Factors Regarding Direct-to-Consumer Personal Genome Testing: Results From a Qualitative Study","authors":"K. Wasson, N. Hogan, T. Sanders, K. Helzlsouer","doi":"10.1080/21507716.2011.650344","DOIUrl":"https://doi.org/10.1080/21507716.2011.650344","url":null,"abstract":"Background: Direct-to-consumer personal genome testing (PGT) is a relatively new service where thousands to millions of single nucleotide polymorphisms, or common genetic variants, are examined and variable risk estimates for diseases and conditions are given. Such genetic testing is available directly to the public and raises ethical, scientific, regulatory, and clinical issues. Limited empirical research exists about how primary care patients view PGT. The goal of this exploratory study was to assess the attitudes and views, decision-making factors, and ethical considerations of primary care patients about direct-to-consumer PGT. Methods: This qualitative study involved recruiting primary care patients from an urban academic medical center clinic and conducting four focus groups (n = 29). Participants were questioned about their views, attitudes, and decision-making considerations regarding direct-to-consumer PGT. Grounded theory methodology was used to analyze the data for categories that emerged from the focus group discussions. Results: Three primary categories emerged from the data analysis: (I) the worth of direct-to-consumer PGT; (II) motivations for testing; and (III) concerns about testing, including ethical issues. Participants reported that they were motivated to test by a desire for information about themselves and for their families, the potential for intervention and prevention of disease, and altruism. Concerns expressed included questions about the accuracy and reliability of this testing, interpretation of results, anticipated risks of revealing results, and ethical issues including confidentiality. Conclusions: This study describes in detail the decision-making considerations of primary care patients about direct-to-consumer PGT. Participants articulated motivations for and potential benefits of PGT, along with perceived concerns, risks, and ethical issues raised by such testing. The study highlights the need for further examination of whether and how these considerations influence decisions and actions of additional primary care populations.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"25 1","pages":"24 - 35"},"PeriodicalIF":0.0,"publicationDate":"2012-02-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"81900839","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":"Level of Moral Development of First-Year Medical Students: A Study at a Medical College in Pakistan","authors":"Q. Qaiser, M. Iqbal, A. Abbasi, A. Feroz","doi":"10.1080/21507716.2011.652336","DOIUrl":"https://doi.org/10.1080/21507716.2011.652336","url":null,"abstract":"Background: As the focus of medical education shifts from factual learning to a more holistic approach for physician training, we need to concentrate more upon the ethical and moral development of medical students. The purpose of this study was to assess the level of moral development in first-year medical students. Methods: We used the Defining Issues Test (DIT-1) to assess moral development levels among newly entering first- year medical students at a medical school in Rawalpindi, Pakistan. The test was administered to 250 students, out of which 130 responses were included in the final analysis. Results: The mean age of the students was 18.6 ± 0.7 years. We found that only 16% of the students scored a “high” level of moral development based on the DIT. Conclusion: There may be several reasons for the low moral development scores in our cohort, but these findings make a strong case for future research and possible educational interventions in Pakistani medical schools.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"29 1","pages":"48 - 53"},"PeriodicalIF":0.0,"publicationDate":"2012-02-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89863526","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":"Development and Testing of an Instrument to Measure Moral Distress in Healthcare Professionals","authors":"A. Hamric, C. Borchers, E. Epstein","doi":"10.1080/21507716.2011.652337","DOIUrl":"https://doi.org/10.1080/21507716.2011.652337","url":null,"abstract":"Background: Although moral distress is increasingly recognized as an important problem that threatens the integrity of health care providers and health care systems, few reliable and valid measures of moral distress are currently in use in research or clinical practice. This article describes the development and testing of a revised measure of moral distress, the Moral Distress Scale–Revised (MDS-R), designed for use in multiple health care settings and with multiple disciplines. Methods: After instrument development and content validity testing, a survey methodology was used to assess reliability and construct validity of the MDS-R. Registered nurses (n = 169) and physicians (n = 37) in eight intensive care units (ICUs) at an academic medical center in the southeastern United States participated; the survey was administered during a 2-week period in January 2011. Results: Adequate reliability and evidence of construct validity were demonstrated. Moral distress was significantly higher for nurses than physicians, although it was negatively correlated with ethical climate for both provider groups. MDS-R scores were significantly higher for those clinicians considering leaving their positions. The proportion of physicians and nurses who had left a previous position or who were considering leaving their current positions due to moral distress was high (16% and 31%, respectively). Conclusions: Initial testing of the MDS-R reveals promising evidence of instrument reliability and validity. The findings from this study lend further support to the important relationships between the moral distress of providers, the ethical climate of health care settings, and retention of health care professionals.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"33 1","pages":"1 - 9"},"PeriodicalIF":0.0,"publicationDate":"2012-02-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"86548023","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":"Health Care Decision Making and Adults with Intellectual Disability: A Descriptive Survey","authors":"Rosann O'Dell, J. Leafman, G. Nehrenz, Dan Bustillos","doi":"10.1080/21507716.2011.640654","DOIUrl":"https://doi.org/10.1080/21507716.2011.640654","url":null,"abstract":"Background: Intellectual disability occurs in approximately 7 to 8 million Americans. The literature demonstrates that this population experiences communication barriers and mischaracterization of abilities during health care encounters, raising ethical considerations regarding patient involvement in health care decisions. Yet, there has been limited research on the involvement of those with intellectual disability in health care decision making. This study examined perceptions of adults with intellectual disability related to involvement in health care decisions. Methods: A quantitative survey instrument was distributed to 120 organizations throughout the United States that provide services to individuals with intellectual disability; their participation was sought to share information about the survey with eligible individuals. Survey results were analyzed to determine the extent to which respondents experienced communication barriers, mischaracterization of abilities, and/or exclusion in health care decision making. Results: Nineteen adults aged 18 years or older completed the survey; the majority (63.2%) of respondents were female. A majority (57.9%) did not perceive communication barriers. In addition, most participants (63.2–78.9%) did not report mischaracterization of their abilities based on responses to questions examining this issue. Roughly 58% of participants felt they had control during physician appointments. Nearly half (47.4%) were either unsure or disagreed that they had control over their health care decisions. Discussion: Results of this study suggest communication and mischaracterization issues are present for this population at varying levels. This study also suggests that adults with intellectual disability are largely unsure of their inclusion in health care decisions. Ethical complexities and considerations warrant further research.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"61 1","pages":"13 - 8"},"PeriodicalIF":0.0,"publicationDate":"2012-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"90345427","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":"Observed Discrepancies in Donors’ Information Sharing and Oocyte-Embryo Management and Disposition Reported to Reproductive Health Professionals: A Call for Programmatic Improvement","authors":"A. S. Jaeger, Linda S. Ross, S. Lindheim","doi":"10.1080/21507716.2011.639125","DOIUrl":"https://doi.org/10.1080/21507716.2011.639125","url":null,"abstract":"Background: Information-sharing practices, disposition of oocytes, and embryo management are at the discretion of the individual assisted reproductive technology (ART) program, donors, and recipients. Ideally, these practices and policies should reflect the information and decision-making needs of the people involved. The ART program that was the focus of this study has incorporated pre- and postdonation discussion of oocyte and embryo disposition into the screening and follow-up processes to improve overall satisfaction. To improve programmatic policy, we assessed how these discussions and the informed consent process were reflected in oocyte donors’ legal contracts. Methods: This retrospective chart review (n = 55) was designed to identify and assess discrepancies between donors’ consented preferences and their executed legal agreements with oocyte recipients. Results: Sixty-three percent of donors had legal contracts that were inconsistent with their medical informed consent. Of this group, 58% agreed with the intended parents’ desires for contact and disposition, resulting in a shift to a position that was more amenable than their signed consent. In contrast, 42% refused to change their desire as expressed in the signed consent, rejecting the intended parents’ request. Most of the differences were around embryo donation, disposition, or donation for research. Seventeen percent of donors were unwilling to allow disclosure of a medical–genetic issue if identified in an offspring. Conclusions: It is imperative for donor coordinators, agency managers, physicians, psychologists, and attorneys to recognize that such discrepancies may occur. These discrepancies may be a sign of duress, manipulation, or anxiety in donors. Alternatively, donors may become clear about their desires and advocate for them as they learn more about the personal implications of their donation through discussions with mental health and legal professionals. Effective communication for all parties is fundamental to create a circle of communication that connects physicians, attorneys, and psychologists and supports donor and recipient decision making.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"20 1","pages":"23 - 32"},"PeriodicalIF":0.0,"publicationDate":"2012-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89764576","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":"Developing a Model of the Benefits and Burdens of Research Participation in Cancer Clinical Trials.","authors":"Connie M Ulrich, Kathleen A Knafl, Sarah J Ratcliffe, Therese S Richmond, Christine Grady, Claiborne Miller-Davis, Gwenyth R Wallen","doi":"10.1080/21507716.2011.653472","DOIUrl":"10.1080/21507716.2011.653472","url":null,"abstract":"<p><strong>Background: </strong>Recruiting and retaining human participants in cancer clinical trials is challenging for many investigators. Although we expect participants to identify and weigh the benefits and burdens of research participation for themselves, it is not clear what burdens adult cancer participants perceive in relation to benefits. We identify key attributes and develop an initial conceptual framework of benefit and burden based on interviews with individuals enrolled in cancer clinical research.</p><p><strong>Methods: </strong>Semistructured interviews were conducted with a purposive sample of 32 patients enrolled in cancer clinical trials at a large northeastern cancer center. Krueger's guidelines for qualitative methodology were followed.</p><p><strong>Results: </strong>Respondents reported a range of benefits and burdens associated with research participation. Benefits such as access to needed medications that subjects otherwise might not be able to afford, early detection and monitoring of the disease, potential for remission or cure, and the ability to take control of their lives through actively participating in the trial were identified. Burdens included the potentiality of side effects, worry and fear of the unknown, loss of job support, and financial concerns.</p><p><strong>Conclusions: </strong>Both benefit and burden influence research participation, including recruitment and retention in clinical trials. Dimensions of benefit and burden include physical, psychological, economic, familial, and social. Understanding the benefit-burden balance involved in the voluntary consent of human subjects is a fundamental tenet of research and important to ensure that subjects have made an informed decision regarding their decision to participate in clinical research.</p>","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"3 2","pages":"10-23"},"PeriodicalIF":0.0,"publicationDate":"2012-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3989990/pdf/nihms-535706.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"32276434","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":"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}