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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

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

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

Posted by Admin in on May 7, 2016


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

Untangling research and practice: What Facebook’s “emotional contagion” study teaches us (Papers: Danah Boyd 2015)0

Posted by Admin in on May 5, 2016

Abstract: Published in 2014, the Facebook “emotional contagion” study prompted widespread discussions about the ethics of manipulating social media content. By and large, researchers focused on the lack of corporate institutional review boards and informed consent procedures, missing the crux of what upset people about both the study and Facebook’s underlying practices. This essay examines the reactions that unfolded, arguing the public’s growing discomfort with “big data” fueled the anger. To address these concerns, we need to start imagining a socio-technical approach to ethics that does not differentiate between corporate and research practices.

Keywords: Big data, Ethics, Facebook, Informed consent, IRB

Boyd D (2015) Untangling research and practice: What Facebook’s “emotional contagion” study teaches us. Research Ethics 12(1) 4-13

Also see
1. (25/03/14) Experimental evidence of massive-scale emotional contagion through social networks
2. (01/04/14) Facebook fiasco: was Cornell’s study of ‘emotional contagion’ an ethics breach? 
3. (10/05/15) Social media personhood as a challenge to research ethics: Exploring the case of the Facebook experiment
4. (10/05/15) Untangling research and practice: What Facebook’s “emotional contagion” study teaches us
5. (20/05/16) Scientists are just as confused about the ethics of big-data research as you
6. (17/06/16) Are Research Ethics Obsolete In The Era Of Big Data?

The Eclipse of ‘Human Subjects’ and the Rise of ‘Human Participants’ in Research Involving Humans. (Books: Igor Gontcharov 2016)0

Posted by Admin in on May 3, 2016

Abstract: The 2010 edition of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS) adopts a new term, human participants, leaving the previous central concept of human subjects behind. At first glance, this transition may as appear to be a concession to social researchers, an attempt to reconsider the centrality of the biomedical standard in the governance of research involving humans, in response to the criticisms of “ethics creep,” or the expansion of ethics review beyond biomedical disciplines, and the growing “ethics rupture” – the disconnect between the ethics of social research and the formal system of ethics review. The argument here is that while being prima facie consistent with an attempt to build an inclusive regulatory framework, the adoption of human participants will not advance the perspectives of the social sciences and the humanities, in part because the overall conceptual framework continues to promote the biomedical perspective of research ethics and reiterates the centrality of written consent.

Gontcharov I (2016) The eclipse of ‘human subjects’ and the rise of ‘hun1an participant’ in research involving, humans. In: van den Hoonaard W and Hamilton A (eds) Ethics Rupture: Exploring Alternatives to Formal Research-Ethics Review.