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Why We Need Guidelines for Brain Scan Data – Wired (Evan D. Morris | September 2019)0

Posted by Admin in on September 18, 2019
 

Your brain is a lot like your DNA. It is, arguably, everything that makes you uniquely you. Some types of brain scans are a lot like DNA tests. They may reveal what diseases you have (Parkinson’s, certainly; depression-possibly), what happened in your past (drug abuse, probably; trauma, maybe), or even what your future may hold (Alzheimer’s, likely; response to treatment, hopefully). Many people are aware—and properly protective—of the vast stores of information contained in their DNA. When DNA samples were collected in New York without consent, some went to great lengths to have their DNA expunged from databases being amassed by the police.

Fewer people are aware of the similarly vast amounts of information in a brain scan, and even fewer are taking steps to protect it. My colleagues and I are scientists who use brain imaging (PET and fMRI) to study neuropsychiatric diseases. Based on our knowledge of the technologies we probably ought to be concerned. And yet, it is rare that we discuss the ethical implications of brain imaging. Nevertheless, by looking closely, we can observe parallel trends in science and science policy that are refining the quality of information that can be extracted from a brain scan, and expanding who will have access to it. There may be good and bad reasons to use a brain scan to make personalized predictions. Good or bad, wise or unwise, the research is already being conducted and the brain scans are piling up.

PET (Positron Emission Tomography) is commonly used, clinically, to identify sites of altered metabolism (e.g., tumors). In research, it can be used to identify molecular targets for treatment. A recent PET study of brain metabolism in patients with mild cognitive impairment predicted who would develop Alzheimer’s disease. In our work at Yale, we have used PET images of a medication that targets an opioid receptor to predict which problem drinkers would reduce their drinking while on the medication.

Read the rest of this discussion piece

 

(China) A 10-year follow up of publishing ethics in China: what is new and what is unchanged (Papers: Katrina A. Bramstedt & Jun Xu | September 2019)0

Posted by Admin in on September 13, 2019
 

Abstract

Background
Organ donation and transplantation in China are ethically complex due to questionable informed consent and the use of prisoners as donors. Publishing works from China can be problematic. The objective of this study was to perform a 10-year follow up on Chinese journals active in donation and transplant publishing regarding the evolution of their publishing guidelines.

Methods
Eleven Chinese journals were analyzed for 7 properties: (1) ethics committee approval; (2) procedure consent; (3) publishing consent; (4) authorship criteria; (5) conflict of interest; (6) duplicate publication; and (7) data integrity. Results were compared with our 2008 study data. Additionally, open access status, impact factor, and MEDLINE-indexing were explored.

Results
Most journals heightened the ethical requirements for publishing, compared to the results of 2008. All 11 now require their published manuscripts to have data integrity. Ten of 11 require ethics committee approval and informed consent for the publication of research studies, whereas in the original study only 2 journals evidenced these requirements. Nine of 11 have criteria for authorship, require conflict of interest disclosure, and forbid duplicate publishing. None of the journals have a policy to exclude data that was obtained from unethical organ donation practices. Nine of 11 journals are MEDLINE-indexed but only 2 are open-access.

Conclusions
Most journals have improved their general ethical publishing requirements but none address unethical organ donation practices.

Keywords:
China; Informed consent; Organ donation; Publishing; Research ethics; Research integrity

Bramstedt, K. and Xu, J. (20019) (China) A 10-year follow up of publishing ethics in China: what is new and what is unchanged. Research Integrity and Peer Review 4(17) https://doi.org/10.1186/s41073-019-0077-3.
Publisher (Open Access): https://researchintegrityjournal.biomedcentral.com/articles/10.1186/s41073-019-0077-3

Enhancing ethics review of social and behavioral research: developing a review template in Ethiopia (Papers: Liya Wassie, et al | August 2019)0

Posted by Admin in on September 1, 2019
 

Abstract

Background:
Africa is increasingly becoming an important region for health research, mainly due to its heavy burden of disease, socioeconomic challenges, and inadequate health facilities. Regulatory capacities, in terms of ethical review processes, are also generally weak. The ethical assessment of social and behavioral research is relatively neglected compared to the review of biomedical and clinical studies, which led us to develop an ethics review assessment tool for use in the review of social and behavioral research in Ethiopia, which could potentially be of value in low- and middle-income settings.

Methods:
Initially, we did a comprehensive literature review on principles, guidelines, and practices of research ethics, on social and behavioral studies, from which we extracted query terms to explore the opinions of selected key informants and focus groups in Ethiopia. The discussants and informants were selected using a convenience sampling method to evaluate an ethics review template, which integrated issues that commonly arise in social and behavioral studies. Finally, we directly solicited opinions from the discussants about the desirability, feasibility, acceptability, and relevance of the ethics review assessment tool and used the resulting data to refine our initial draft.

Results and conclusion:
Although the same basic ethics principles govern all research studies, social and behavioral research have some disciplinary particularities that may require reviewers to exercise a different orientation of ethical attention in some cases. Using a qualitative approach, we developed a review assessment tool that could potentially be useful to raise awareness, focus attention, and strengthen the review of social and behavioral studies by ethics review committees, particularly in settings without a long-standing tradition of reviewing such research. This process also exposed some areas where further capacity building and discussion of ethical issues may be necessary among stakeholders in the review of social and behavioral research.

Keywords
Behavioral, social, qualitative, biomedical research, ethics review, low and middle income

Liya Wassie, Senkenesh Gebre-Mariam, Geremew Terekegne et al. (2019) Enhancing ethics review of social and behavioural research: Developing a review template in Ethiopia. Research Ethics 15(4) 1–23.
Publisher (Open Access): https://journals.sagepub.com/doi/full/10.1177/1747016119865731

Expression of Interest: Consumer Inclusive Research – Consumer Reference Group0

Posted by Admin in on August 26, 2019
 

The Hopkins Centre is recruiting 8 consumer representatives on a Consumer Inclusive Research – Consumer Reference Group.

The Hopkins Centre is conducting research on “Supporting the ethical inclusion of people with acquired disability in research: Consumer informed approaches”. We invite consumers and community members to join a reference group which will support and guide us in this project. We cannot and should not do our research without including you, so we are asking for your help.

This opportunity would suit a consumer who has a particular interest in research.

Membership
We are recruiting 8 consumers or carers from a variety of backgrounds to participate in a maximum of 4 meetings to be held over approximately 6 months via teleconference or web based.

Applications from a range of people and groups is encouraged.

How to apply
Please complete the Expression of Interest form below and return to Dr Gary Allen at The Hopkins Centre via g.allen@griffith.edu.au by 9am Friday 20 September 2019.

For queries relating to the Reference Group or assistance completing this Expression of Interest, please contact Gary Allen at The Hopkins Centre via g.allen@griffith.edu.au or by phone on c/o 07 3735 2069.

Download expression of interest form >

Conflicts of interest declarationGary Allen is a Griffith University staff member, he is the lead investigator for this research project and he is a member of The Hopkins Centre’s Ambassadors Committee.  Gary is also a member of the national committee reviewing s4 of the National Statement (2007 updated 2018).

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