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Research with, not about, communities – Ethical guidance towards empowerment in collaborative research, a report for the TRUST project – TRUST (Kate Chatfield, et al | July 2018)0

Posted by Admin in on August 28, 2018
 

Executive Summary and Introduction
Community engagement is an ethical imperative (a ‘must’) for researchers operating globally. Research participants, their local communities and research partners in international locations should be equal stakeholders1 in the pursuit of research-related gains.2,3

Great TRUST paper about a more respectful approach to research with communities. We have included links to a treasure trove of papers, reports, blog posts and news items on matters around the topics discussed in this paper.

In the 1990s, community engagement became prominent as the new guiding light of public health efforts. Involving communities in research and health-improvement programs led to better results than government-led programs alone.4 At the same time, the emerging need to protect indigenous communities in genetic research led Canadian Charles Weijer to demand a fifth principle in bioethics5,6: protection for communities.7 The individualistic nature of existing research ethics principles, stemming from US origins with its traditional emphasis upon individual autonomy was thus questioned. Asian and African ethicists added their voices to highlight the importance of respect for communities, as well as individuals.8,9
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This report provides guidance on community engagement in research from the perspective of the four TRUST values: fairness, respect, care and honesty.
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These values were identified by a global group of experts as the cornerstones of equitable research partnerships between high-income country (HIC) and low- and middle-income country (LMIC) research partners in any discipline10. The group included representatives from two vulnerable populations that carry a high burden of research: Kenyan sex workers and San indigenous peoples of Southern Africa. The guidance is suitable for all who support vulnerable populations involved in research projects, including civil society organisations, whether or not they are carrying out the research projects themselves.
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Chatfield, K. et al. (2018) Research with, not about, communities – Ethical guidance towards empowerment in collaborative research, a report for the TRUST project.  http://trust-project.eu/wp-content/uploads/2018/07/TRUST-Community-Participation-in-Research-Final.pdf

Ethical Considerations When Using Social Media for Evidence Generation (Papers: Gabrielle Berman, et al | 2018)0

Posted by Admin in on August 21, 2018
 

ABSTRACT
There are significant ethical implications in the adoption of technologies and the production and use of the resulting data for evidence generation. The potential benefits and opportunities need to be understood in conjunction with the potential risks and challenges. When using social media to directly engage children and their communities, or when establishing partnerships with these organizations for data collection and analysis, adoption of these technologies and their resultant data should not be exclusively driven by short-term necessity but also by the long-term needs of our younger partners. When engaging with social media and indeed most technology, thoughtfulness, reflection and ongoing interrogation is required. This paper examines the benefits, risks and ethical considerations when undertaking evidence generation: (a) using social media platforms and (b) using third-party data collected and analysed by social media services. It is supplemented by practical tools to support reflection on the ethical use of social media platforms and social media data.

Berman, Gabrielle; Powell, James; Garcia Herranz, Manuel (2018). Ethical Considerations When Using Social Media for Evidence Generation, Innocenti Discussion Papers no. 2018-01, UNICEF Office of Research – Innocenti, Florence https://www.unicef-irc.org/publications/967-ethical-considerations-when-using-social-media-for-evidence-generation-discussion.html

Ethical Considerations When Using Geospatial Technologies for Evidence Generation (Papers: Gabrielle Berman, et al | 2018)0

Posted by Admin in on August 19, 2018
 

ABSTRACT
Geospatial technologies have transformed the way we visualize and understand social phenomena and physical environments. There are significant advantages in using these technologies and data however, their use also presents ethical dilemmas such as privacy and security concerns as well as the potential for stigma and discrimination resulting from being associated with particular locations. Therefore, the use of geospatial technologies and resulting data needs to be critically assessed through an ethical lens prior to implementation of programmes, analyses or partnerships. This paper examines the benefits, risks and ethical considerations when undertaking evidence generation using geospatial technologies. It is supplemented by a checklist that may be used as a practical tool to support reflection on the ethical use of geospatial technologies.

Berman, Gabrielle; de la Rosa, Sara; Accone, Tanya (2018). Ethical Considerations When Using Geospatial Technologies for Evidence Generation, Innocenti Discussion Papers no. 2018-02, UNICEF Office of Research – Innocenti, Florence https://www.unicef-irc.org/publications/971-ethical-considerations-when-using-geospatial-technologies-for-evidence-generation.html

Disgraced trachea surgeon – and six co-authors – found responsible for misconduct – Science (Alison Abbott | June 2018)0

Posted by Admin in on August 18, 2018
 

Studies co-authored by Paolo Macchiarini misrepresented patients’ conditions, according to the Karolinska Institute.

The Karolinska Institute in Stockholm has declared seven researchers responsible for scientific misconduct in a case involving six research articles co-authored by disgraced thoracic surgeon Paolo Macchiarini.

We included links to the earlier reporting about the horrendous Paolo Macchiarini story

It says that Macchiarini, who transplanted synthetic windpipes into three patients at the Karolinska University Hospital between 2011 and 2013, held the ultimate responsibility for the papers. The institute’s investigation found that the studies included “fabricated and distorted descriptions of the patients’ conditions”, and lacked the justification that the patients were given the treatment as a last resort. The experimental surgery failed.
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The president of the Karolinska Institute, Ole Petter Ottersen, has called for the papers to be retracted. The outcome overturns a 2015 decision from an investigation under the previous president, which stated that Macchiarini had not committed misconduct in these papers.
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Read the rest of this discussion piece

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