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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Rethinking Informed Consent in Biobanking and Biomedical Research: a Taiwanese Aboriginal Perspective and the Implementation of Group Consultation (Papers: Chih-hsing Ho | 2017)0

Posted by Admin in on February 1, 2018
 

Abstract
The current informed consent mechanism is based mainly on the rationale of individualism, particularly for its emphasis on autonomy and self-determination. However, in biobanking and genetic research, research findings may pose a risk of harm to the collective, quite aside from a particular individual. Under this circumstance, individual consent needs to be supplemented by other mechanisms, such as group consent obtained from the relevant group or community. In Taiwan, the inclusion of Taiwanese aborigines in biobanking and genetic research challenges the conventional wisdom of individual consent-taking, which overlooks the significance of collective involvement in decision-making. This paper discusses the rationale of the group consent requirement in Taiwan, which seeks to include Taiwanese aborigines’ perspectives, and the related measures that have been pronounced to implement group consultation. It is further argued that consent procedures should not be transactional in being primarily focused on types of information that is to be communicated. Rather, it should be a process that ensures comprehension, empowerment and trust.

Keywords
Informed consent, Biobanking, Biomedical research. Group consultation, Taiwanese aborigines, Human Subjects Research Act

Ho, C.-h. (2017). “Rethinking Informed Consent in Biobanking and Biomedical Research: a Taiwanese Aboriginal Perspective and the Implementation of Group Consultation.” Asian Bioethics Review 9(4): 353-365.
Publisher (Open Access):  https://link.springer.com/article/10.1007/s41649-017-0037-5

Ethical complexities in child co-research (Papers: Merle Spriggs and Lynn Gillam | 2017)0

Posted by Admin in on January 2, 2018
 

Abstract
Child co-research has become popular in social research involving children. This is attributed to the emphasis on children’s rights and is seen as a way to promote children’s agency and voice. It is a way of putting into practice the philosophy, common amongst childhood researchers, that children are experts on childhood. In this article, we discuss ethical complexities of involving children as co-researchers, beginning with an analysis of the literature, then drawing on data from interviews with researchers who conduct child co-research. We identify six ethical complexities, some of which are new findings which have not been mentioned before in this context. In light of these possible ethical complexities, a key finding is for researchers to be reflexive – to reflect on how the research may affect child co-researchers and participants before the research starts. A separate overriding message that came out in responses from the researchers we interviewed was the need for support and training for child co-researchers. We conclude by providing a list of questions for reflexive researchers to ask of themselves when they use child co-research methodology. We also provide important questions for human research ethics committees to ask when they review projects using child co-research.

Keywords
co-researcher, ethics, ethics committees, reflexivity, research ethics, research methodology

Spriggs M. and Gillam L (2017) “Ethical complexities in child co-research.” Research Ethics 0(0): 1747016117750207.
Publisher: http://journals.sagepub.com/doi/full/10.1177/1747016117750207#articleCitationDownloadContainer

Friday afternoon’s funny – Screening a potential participant pool0

Posted by Admin in on December 29, 2017
 

Cartoon shows Count Dracula being screened from a pool because of his lack of life signs.

Cartoon by Don Mayne www.researchcartoons.com

Like most of our Friday afternoon chuckles this one raises some important points. Do you intend to screen the potential participant pool to exclude people who might be interested in taking part in your project but aren’t appropriate participants. Why? How? Who will be conducting the screening? What will excluded persons be told and will they be referred anywhere?

Do consultancies compromise academic research and ethics? A case study of Burma/Myanmar (Papers: Ardeth Maung Thawnghmung | April 2017)0

Posted by Admin in on December 24, 2017
 

ABSTRACT
This paper contributes to ongoing debates about interactions between the political science discipline and policymaking communities by analysing the role played by scholars who work as consultants for governments, non-governmental organizations, and international aid agencies in conflict-affected and post-conflict societies. It argues that although consultancies permit scholars to engage with policy communities and provide convenient access for data collection, they also present methodological constraints and can complicate and compromise research ethics due to the inherent tensions linking the two different realms with their differing norms, agendas, and goals. The findings are based on the author’s decades of field experience in Myanmar, a country which has recently received much attention from the international community, on interviews with nine PhD candidates or PhD holders who have been employed as consultants for aid agencies in Myanmar and Southeast Asia, and analysis of secondary sources on countries with similar situations.

KEYWORDS:
Consultancy, Qualitative Research Method, Myanmar/Burma, Research Ethics, Policy-making, Transitional Democracies

Thawnghmung AM. (2017). Do consultancies compromise academic research and ethics? A case study of Burma/Myanmar. Asian Journal of Political Science 25(2): 176-193.
Publisher: http://www.tandfonline.com/doi/full/10.1080/02185377.2017.1307122
Research Gate: …/publication/316061682_Do_consultancies_compromise_academic_research_and_ethics…

 

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