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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

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).

International Association for the Study of Forced Migration (IASFM) Code of ethics: Critical reflections on research ethics in situations of forced migration0

Posted by Admin in on August 18, 2019
 

Context:
Research with people in situations of forced migration poses particular ethical challenges because of unequal power relations, legal precariousness, extreme poverty, violence, the criminalization of migration, politicized research contexts, the policy relevance of our research and/or dependence on government and non-governmental services and funding. However, Research Ethics Boards (REBs) are not always aware of these particular ethical issues; some countries and institutions do not have REBs; and some kinds of research are not subject to REB approval. In this context of heightened risks of research, and uneven institutional accountability for research ethics, the International Association for the Study of Forced Migration (IASFM) hereby proposes this code of ethics for research with people in situations of forced migration. Similarly to how Indigenous research methodologies incorporate a broad, engaged and critical notion of ethics that recognizes power differentiations and the agency of the participants within exploitive research histories, this document sets forth principles that are starting points for respectful research.1 It is intended to reflect the broad diversity of our membership, including those involved in gathering information – whether in an academic or community setting – as well as those who are asked to take part in research. That being said, we acknowledge that this is not a comprehensive nor exhaustive document, but rather a starting point for active, critical engagement with ethical issues.

Access the Code

Long-Term Agreement for Services (LTAS) for the Provision of Global Research Quality Assurance Services and an Ethical Review Facility for Evidence Generation (Request for proposal | August 2019)0

Posted by Admin in on August 13, 2019
 

UNICEF is putting out a call for tenders for a Global Ethical Review Facility for the organisation. This would entail undertaking ethical reviews of evidence generation projects across the organization and providing advice on possible mitigation strategies.

Information can be found here: https://www.ungm.org/public/Notice/95212

Gabrielle Berman, PhD
Senior Advisor – Ethics in Evidence Generation
UNICEF Innocenti
Via degli Alfani, 58
Firenze, Italia
50122
Skype: gabrielle.berman

Using ASCO’s Clinical Database for Commercial Research Raises Questions, Ethicists Say – Medscape (Ellie Kincaid | May 2019)0

Posted by Admin in on August 8, 2019
 

Eleven abstracts of the thousands accepted for publication at this year’s annual meeting of the American Society of Clinical Oncology (ASCO), one of the largest cancer research conferences in the world, draw upon data collected through a nonprofit subsidiary of ASCO that in 4 years has brought together the electronic health records (EHRs) of 1.2 million patients.

The ASCO subsidiary — CancerLinQ — will have its own 1200 square foot booth in prime real estate at the entrance to the meeting’s exhibit hall. It has received data from 48 healthcare institutions to help them improve care for patients and has compiled a treasure trove of data for researchers studying how expensive cancer drugs work for patients in the real world. But ethicists are concerned that CancerLinQ is allowing companies to sell access to the data after they have been stripped of patient identifiers, without asking for patients’ permission.

“I think that the ethics of profiting off of someone else’s information is dicey and at the very least the patient should go in with their eyes open, and that requires informing them,” said Robert Field, PhD, MPH, JD, a professor of law and public health at Drexel University, Philadelphia, Pennsylvania.

Read the rest of this discussion piece

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