| 1. |
- Colnerud, Gunnel
(författare)
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Brief report : ethical problems in research practice
- 2013
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Ingår i: Journal of Empirical Research on Human Research Ethics. - : University of California Press. - 1556-2646 .- 1556-2654. ; 8:4, s. 37-41
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Tidskriftsartikel (refereegranskat)abstract
- Most accounts of the ethical problems facing researchers across a broad spectrum of research fields come from ethicists, ethics committees, and specialists committed to the study of ethics in human research. In contrast, this study reports on the ethical questions that researchers, themselves, report facing in their everyday practice. Fifty-five Swedish researchers contributed 109 examples of ethical dilemmas, conflicts, and problems in research. They were all researchers at the postdoctoral level in the fields of medicine, the humanities, education, and the social sciences, who devoted at least 50 percent of their working hours to research. They reported issues they face before, during, and after gathering data. Their range of issues is broader than generally discussed and points to the importance of researchers’ ethical sensitivity.
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| 2. |
- Colnerud, Gunnel, 1947-
(författare)
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Ethical problems in research practice
- 2012
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Ingår i: Journal of Empirical Research on Human Research Ethics. - East Bay USA : University of California Press. - 1556-2646 .- 1556-2654. ; 8:4, s. 37-41
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Tidskriftsartikel (refereegranskat)abstract
- This article has its origin in the legislative regulation of research ethics and is a contribution to the knowledge about the ethical problems, which researchers actually face in their everyday practice. The study is an example of descriptive ethics with a theoretical background in a model for relations between norms in professional ethics. The empirical method used is critical incidents technique. Data have been collected by asking researchers about their experiences of ethical problems in their practice. The participants were researchers at the post-doctoral level in the fields of medicine, the humanities, education and social sciences. They had all been awarded grants from the Swedish Research Council. The total data, which comprises 109 examples reported by 55 respondents, is analysed by qualitative content analyses. In the findings reported in this article we can see that researchers deal with a variety of problems related to informed consent and risks of harm, which solutions are dependent on the researchers’ ethical sensitivity, discretion and judgement. Moreover, it may be noted that ethics win over other standards, when ethical consideration has come into conflict with scientific quality.
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| 3. |
- Matar, Amal, et al.
(författare)
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Curricular Aspects of the Fogarty Bioethics International Training Programs
- 2014
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Ingår i: Journal of Empirical Research on Human Research Ethics. - : SAGE Publications. - 1556-2646 .- 1556-2654. ; 9:2, s. 12-23
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Tidskriftsartikel (refereegranskat)abstract
- THE CURRICULUM DESIGN, FACULTY characteristics, and experience of implementing masters' level international research ethics training programs supported by the Fogarty International Center was investigated. Multiple pedagogical approaches were employed to adapt to the learning needs of the trainees. While no generally agreed set of core competencies exists for advanced research ethics training, more than 75% of the curricula examined included international issues in research ethics, responsible conduct of research, human rights, philosophical foundations of research ethics, and research regulation and ethical review process. Common skills taught included critical thinking, research methodology and statistics, writing, and presentation proficiency. Curricula also addressed the cultural, social, and religious context of the trainees related to research ethics. Programs surveyed noted trainee interest in Western concepts of research ethics and the value of the transnational exchange of ideas. Similar faculty expertise profiles existed in all programs. Approximately 40% of faculty were female. Collaboration between faculty from low- and middle-income countries (LMICs) and high-income countries (HICs) occurred in most programs and at least 50% of HIC faculty had previous LMIC experience. This paper is part of a collection of papers analyzing the Fogarty International Research Ethics Education and Curriculum Development program.
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| 4. |
- Matar, Amal, et al.
(författare)
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Perspectives of Egyptian Research Ethics Committees regarding Their Effective Functioning
- 2013
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Ingår i: Journal of Empirical Research on Human Research Ethics. - : SAGE Publications. - 1556-2646 .- 1556-2654. ; 8:1, s. 32-44
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Tidskriftsartikel (refereegranskat)abstract
- The recent increase in research in the Middle East has been associated with the establishment of research ethics committees (RECs). Our aim was to obtain perspectives of RECs regarding the challenges that impede their effective functioning. We conducted in-depth interviews using a semi-structured interview guide. We transcribed and analyzed the interviews to uncover major themes and subthemes. We identified the following themes: membership composition; training needs of members; availability of human and capital resources; role of the national government; concerns with the informed consent process; government scrutiny of research; investigator-related issues; and concerns with transfer of biological samples to other countries. Our interview study revealed several barriers that need to be considered by appropriate stakeholders to enhance adequate functioning of RECs.
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| 5. |
- Munung, NS, et al.
(författare)
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How often are ethics approval and informed consent reported in publications on health research in Cameroon? A five-year review
- 2011
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Ingår i: Journal of empirical research on human research ethics : JERHRE. - : SAGE Publications. - 1556-2654 .- 1556-2646. ; 6:3, s. 93-97
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Tidskriftsartikel (refereegranskat)abstract
- We assessed the extent of research ethics approval and informed consent reporting in publications emanating from Cameroon and indexed in PubMed from 2005–2009. In our review of 219 full-length articles, we found that 57.53% reported ethics approval, 70.78% informed consent, and 50.68% both ethics approval and informed consent. Reporting these procedures was more common in randomized clinical trials than in other study designs. Also, 59.52% of the articles on vulnerable populations documented ethics approval and 76.19% documented informed consent. This study also identified some structures for ethics review and recommends some next steps for research on the quality of ethics review in Cameroon.
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| 6. |
- Silverman, Henry, et al.
(författare)
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Enhancing Research Ethics Capacity in the Middle East : Experience and Challenges of a Fogarty-Sponsored Training Program
- 2013
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Ingår i: Journal of Empirical Research on Human Research Ethics. - : SAGE Publications. - 1556-2646 .- 1556-2654. ; 8:5, s. 40-51
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Tidskriftsartikel (refereegranskat)abstract
- WE DESCRIBE THE RESEARCH ETHICS capacity needs of the countries from the Middle East region. Against this background, we relate the experience of an international training program focused on providing long-term training in research ethics to individuals from low- and middle-income countries in the Middle East area. We describe our pedagogical approach to training, program changes to address challenges faced, and accomplishments of trainees. Many former trainees developed research ethics curricula in their home institutions, established or enhanced their institutions' research ethics committees, provided leadership to national research ethics systems, and conducted research in research ethics. Based on our analysis, we make recommendations for how trainees can further address current regional research ethics needs in the Middle East and conduct future research. This paper is part of a collection of papers analyzing the Fogarty International Center's International Research Ethics Education and Curriculum Development program.
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| 7. |
- Swartling, Ulrica, et al.
(författare)
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Children's Views on Long-Term Screening for Type 1 Diabetes.
- 2014
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Ingår i: Journal of Empirical Research on Human Research Ethics. - : SAGE Publications. - 1556-2654 .- 1556-2646. ; 9:4, s. 1-9
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Tidskriftsartikel (refereegranskat)abstract
- There are an increasing number of medical research studies involving children, including many long-term birth cohort studies. Involving children raises many issues, and little is known about children's own views. This study explored children's views (N = 5,851) on participation in a long-term screening study for type 1 diabetes. The results show that children 10 to 13 years of age have in general a positive attitude to pediatric research and emphasized trust in researchers. The children stressed the importance to receive information and to be involved in decisions. The children also reported feeling concerned about blood sampling and disease risk. Researchers involved in long-term pediatric research need to address these issues to promote involvement and decrease worry.
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| 8. |
- Swartling, Ulrica, 1965-, et al.
(författare)
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"My parents decide if I can. I decide if I want to." Children’s views on participation in medical research
- 2011
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Ingår i: Journal of Empirical Research on Human Research Ethics. - : University of California Press. - 1556-2646 .- 1556-2654. ; 6:4, s. 68-74
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Tidskriftsartikel (refereegranskat)abstract
- The participation of children in medical research raises many ethical issues, in particular regarding assent. However, little is known about children's own views on participation. This study presents results from interviews with children 10–12 years old with and without experience in a large-scale longitudinal screening study. We identified five themes: (1) knowledge about research, (2) a sense of altruism, (3) shared decision-making and right to dissent, (4) notions of integrity, privacy, and access, and (5) understanding of disease risk and personal responsibilities. We conclude that the children feel positive towards medical research, and want to take an active part in decisions and have their integrity respected. However, the study also indicates that children who had participated in longitudinal screening had a limited understanding, suggesting the vital importance of providing information appropriate to their age and maturity. This information should be provided out of respect for the children as persons, but also to promote their willingness to continue participating in longitudinal studies.
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