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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Clarifying ethical responsibilities in paediatric biobanking (Papers Merle Spriggs & Craig L. Fry)0

Posted by Admin in on May 11, 2016
 

ABSTRACT

Background: The creation of biobanks for storage of human specimens and use in health and medical research is expanding globally. Biobanks hold significant potential to facilitate such research. However, important ethical questions arise, particularly in the pediatric setting, in relation to consent, future use, and the balance of benefits against potential harms. To date, these ethical issues have been undertheorized and under-researched in the biobanks domain. The aim of this study was to examine stakeholder attitudes regarding the ethical responsibilities of researchers, biobank custodians, Human Research Ethics Committees (HRECs), research institutions, and parents.

Methods: A qualitative study using semistructured interviews with a purposive sample of key informants (n = 14) with relevant expertise was conducted. Participants were interviewed about their pediatric biobank experiences, the main ethical issues observed as an HREC member, researcher, or custodian, and future needs.

Results: Participants expressed concerns about consent processes in the biobanking context, including issues regarding the provision of information, level of understanding, voluntariness, and the point at which children have a role or can consent for themselves. Other major issues raised were biobank quality management, the return of results, and the idea of human tissue as a scarce precious resource. Key informants also highlighted uncertainties about the custodianship of biobank samples and reasonable limits on the custodian’s role.

Conclusions: Pediatric biobanks are a valuable resource, presenting unique opportunities to advance children’s health and well-being. Properly run pediatric biobanks entail responsibilities for institutes, custodians, researchers, and research ethics committees. We discuss ethical implications for pediatric biobank policy and practices, as well as future information needs in light of the study findings.

Spriggs, M. & Fry, C. (2015). Clarifying ethical responsibilities in paediatric biobanking. AJOB Empirical Bioethics DOI:10.1080/23294515.2015.1049718
http://www.tandfonline.com/eprint/QDVEzAwZsTqT9QkwvBjB/full xxxx

The Oaxaca Incident: A geographer’s efforts to map a Mexican village reveal the risks of military entanglement – The Chronicle of Higher Education (Paul Voosen 2016)0

Posted by Admin in on May 10, 2016
 

An American scholar. A Mexican village. The U.S. military. What could go wrong?

On most maps, Tiltepec doesn’t look like much. A Zapotec village of several hundred indigenous people, Tiltepec clings to the steep slopes of the Sierra Juárez, a formidable range in the southern Mexican state of Oaxaca. Its people have lived there for generations in relative isolation under the shadow of Cerro Negro, where once their ancestors forced conquistadors off a cliff to the Rio Vera below. The valley teems with ancient earthen terraces, platforms, and sacred caves. Yet find Tiltepec on government maps and all you’ll see is bare topography and a name. Viewed on Google Earth, it’s even less — a few patches of white rectangles drowned in forest. For most of the world, Tiltepec might as well not exist.

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Using the Emanuel et al. framework to assess ethical issues raised by a biomedical research ethics committee in South Africa (Papers: Joyce Mahlako Tsoka-Gwegweni and Douglas Wassenaar 2014)0

Posted by Admin in on May 8, 2016
 

Abstract: The Emanuel, Wendler, and Grady framework was designed as a universal tool for use in many settings including developing countries. However, it is not known whether the work of African health research ethics committees (RECs) is compatible with this framework. The absence of any normative or empirical weighting of the eight principles within this framework suggests that different health RECs may raise some ethical issues more frequently than others when reviewing protocols. We used the Emanuel et al. framework to assess, code, and rank the most frequent ethical issues considered by a biomedical REC during review of research protocols for the years 2008 to 2012. We extracted data from the recorded minutes of a South African biomedical REC for the years 2008 to 2012, designed the data collection sheet according to the Emanuel et al. framework, and removed all identifiers during data processing and analysis. From the 98 protocols that we assessed, the most frequent issues that emerged were the informed consent, scientific validity, fair participant selection, and ongoing respect for participants. This study represents the first known attempt to analyze REC responses/minutes using the Emanuel et al. framework, and suggests that this framework may be useful in describing and categorizing the core activities of an REC.

Keywords: Emanuel framework; RECs; South Africa; assessment of ethics review; ethical review framework; health research ethics; research ethics committee review outcomes

Tsoka-Gwegweni JM, Wassenaar DR.(2014) Using the Emanuel et al. Framework to Assess Ethical Issues Raised by a Biomedical Research Ethics Committee in South Africa. Journal of Empirical Research on Human Research Ethics. 9(5):36-45. doi: 10.1177/1556264614553172
Publisher: http://jre.sagepub.com/content/9/5/36.long

Confidentiality in participatory research: Challenges from one study (Papers: Elmira Petrova et al 2014)0

Posted by Admin in on May 7, 2016
 

Abstract

Aim: This article presents key ethical challenges that were encountered when conducting a participatory qualitative research project with a very specific, small group of nurses, in this case with practice development nurses in Malta.

Background: With the small number of nurses employed in practice development roles in Malta, there are numerous difficulties of maintaining confidentiality. Poorly constructed interventions by the researcher could have resulted in detrimental effects to research participants and the overall trustworthiness of the research. Generally, ethical guidelines for research exist to reinforce validity of research; however, there is not an established consensus on how these strategies can be utilised in some types of qualitative field work.

Research design: The researcher used an exploratory case study methodology. The sample consisted of 10 participants who were interviewed twice using face-to-face interviews, over a period of 2 months.

Ethical considerations: The study was ethically reviewed by the University Research Ethics Committee and the Faculty Research Ethics Committee, University of Malta. The participants referred to in this article have been given adequate information about the study and their consent has been obtained.

Discussion: Numerous strategies for ensuring confidentiality during recruitment of the participants, during data collection, during transcription and data analysis and during dissemination of research results assisted the researcher in responding to potential and actual ethical issues.

Conclusion: This article emphasises the main strategies that can be used to respond to ethical challenges when researching with a small easily identifiable group. The learning discussed here may be relevant to or even transferable to other similar research studies or research contexts. These methods fostered a greater credibility throughout the research process and predisposed the participants to greater trust, and thus, they disclosed their experiences and speak more freely, thus enhancing the quality of the study.

Keywords: Confidentiality consent ethics participatory research qualitative research

Petrova E, Dewing J, Camilleri M (2014) Confidentiality in participatory research: Challenges from one study. Nursing Ethics doi: 10.1177/0969733014564909
Publisher: http://nej.sagepub.com/content/early/2014/12/29/0969733014564909.abstract

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