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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Guest Post — Open Research in Practice: Moving from Why to How? – Scholarly Kitchen (Fiona Murphy, et al | June 2019)0

Posted by Admin in on July 11, 2019
 

Today’s research knowledge can be harvested and data analyzed faster than has been possible in all previous generations combined. As a result, Open Research practices and outputs face a number of tensions between initial intentions and unforeseen consequences. For example, the FAIR Data Principles propose that research data should be Findable, Accessible, Interoperable, and Reusable — but nothing has prepared us for the use and misuse of personal data. Even if they start out ethically approved and safe in the researcher’s toolkit, they can later be sold to a third party in exchange for analytical services, enabling machines to identify disease states from a picture, classify your intelligence and demographic profile in four “likes” or less, or traffic organs and direct market to those that need them on social media.

And so our questions about Open Research are also changing — from “why” to “how” — amidst growing awareness that the required skill sets, both technical and social, are not yet part of the standard training programs for researchers. Consider, for example, the questions and challenges that early career researchers face as they critique a distinguished professor’s work while conducting an open peer review. How do they balance the need for research integrity and rigorous review without career-ending consequences? How do we protect reviewers who review in good faith only to be raked through the coals on social media, while the perpetrators are funded and their work is published.

So, if you actually want to practice Open Research, how do you learn about it? How do you balance effort with effect? How do you discover and validate the standards that are being adopted by your communities?

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Pragmatic trials without informed consent? – The Ethics Blog (Pär Segerdahl | April 2019)0

Posted by Admin in on July 9, 2019
 

Randomized controlled trials (RCTs) are considered to be the gold standard for determining a causal effect of medical interventions. To achieve this aim, possible confounding factors must be avoided. This implies excluding many patients from participating in the trial, for example, patients with concomitant conditions. A negative consequence of these exclusions, however, is limited generalizability. Studying the artificially uniform participant group, you will be able to determine a causal effect, but you will know much less about real-life treatment outcomes in the population where the intervention actually will be used.

This radical and controversial idea isn’t currently permissible in many jurisdictions (including Australia), but that doesn’t mean it isn’t worth serious discussion.

Further artificiality is created by the written informed consent procedure, which excludes even further patients from participating in the trial. Moreover, because they know they participate in a clinical trial, participants may change their behavior.

All this points to the importance of so-called pragmatic randomized controlled trials. In such trials, the effectiveness of two approved and routinely prescribed medicines are compared in normal clinical practice. This avoids most of the artificiality of RCTs and significantly improves generalizability and practical clinical relevance. Randomization is still required for scientific purposes, however, and written informed consent is an ethical obligation.

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Ethical Considerations for Disseminating Research Findings on Gender-Based Violence, Armed Conflict, and Mental Health: A Case Study from Rural Uganda (Papers: Jennifer J. Mootz, et al | June 2019)0

Posted by Admin in on July 8, 2019
 

Abstract

Gender-based violence (GBV) is a major public health problem that is exacerbated in armed conflict settings. While specialized guidelines exist for conducting research with GBV, guidance on disseminating findings from GBV research is scant. This paper describes ethical considerations of designing and disseminating research findings on GBV, armed conflict, and mental health (including alcohol misuse) in conflict-affected settings in Northeastern Uganda. Following completion of two research studies, we conducted a half-day dissemination meeting with local community professionals (n=21) aged 24 to 60. Attendees were divided into small groups and given a quiz-style questionnaire on research findings to prompt discussion. Two primary ethical tensions arose. One ethical consideration was how to disseminate research findings equitably at the participant level after having taken care to collect data using safe and unharmful methods. Another ethical issue concerned how to transparently share findings of widespread problems in a hopeful and contextualized way in order to facilitate community response. We recommend planning for dissemination a priori, engaging with partners at local levels, and grounding dissemination for action in evidence-based practices.

Mootz, J. J., Taylor, L., Milton L. Khoshnood, W. & Khoshnood, K. (2019) Ethical Considerations for Disseminating Research Findings on Gender-Based Violence, Armed Conflict, and Mental Health: A Case Study from Rural Uganda. Health and Human Rights Journal.
Publisher (Open Access): https://www.hhrjournal.org/2019/06/ethical-considerations-for-disseminating-research-findings-on-gender-based-violence-armed-conflict-and-mental-health-a-case-study-from-rural-uganda/

Debriefing for ego threat may require more than we thought – Psychology & More (Dana C. Leighton, Ph.D. | July 2019)0

Posted by Admin in on July 7, 2019
 

When social psychologists manipulate a participant’s attitudes or beliefs, we have an ethical obligation to undo that manipulation. I explain it to my students as “putting the participant back the way we found them.” We frequently use a debriefing procedure, in the form of a written and/or (as in the case of my lab) verbal notice something to the effect of “yuk yuk, gosh, ya know what? we were just kidding. the thing you (read/did) was fake, we made it up, and it doesn’t mean anything.” Here is an example from the verbal debriefing script I used in a study several years ago that presented participants with a fake newspaper article about vandalism by University of Texas students.

I want to thank you for your participation here today and for your contribution to this project. We really appreciate your help with this work. Let me tell you a little bit about what we are trying to study.

First, we want to assure you that the incident you read about never happened on the campus. We created a fake newspaper article about it in order to better understand how people respond to these kinds of situations. To our knowledge, no University of Texas students have ever been involved in such an incident.

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The full article is behind a paywall, but here’s the reference:
Miketta, S., & Friese, M. (2019). Debriefed but still troubled? About the (in)effectiveness of postexperimental debriefings after ego threat. Journal of Personality and Social Psychology. Advance online publication.
http://dx.doi.org/10.1037/pspa0000155

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