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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

 For Vulnerable Populations, the Thorny Ethics of Genetic Data Collection – UnDark (Adrian Pecotic | September 2019)0

Posted by Admin in on October 10, 2019
 

To be equitable, genetics research needs more diverse samples. But collecting that data could exploit the very people scientists intend to help.

IN 2009, RESEARCHERS collected DNA from four elderly men in Namibia, each from one of the many San indigenous communities scattered across southern Africa. A year later, analyses of the men’s DNA were published in the journal Nature — alongside that of South African human rights activist Desmond Tutu. The intention, in part, was to increase the visibility of southern, indigenous Africans in genetic-based medical research. Soon after, a nongovernmental organization (NGO) representing indigenous minorities in Southern Africa took issue with the consent procedures used to gather the data and wrote to Nature’s editors accusing the paper’s authors of “absolute arrogance, ignorance, and cultural myopia.”

The San case highlights the thorny ethics of collecting genetic data. Yet today, to make medicine more equitable, scientists see the importance of sampling DNA from more diverse populations. Most genetic research uses DNA from descendants of Europeans, which means the related medical applications — such as genetic tests to see the likelihood of developing a certain disease, called polygenic risk assessments — can only benefit those populations. In 2018 in the United States, for example, the National Institutes of Health launched All of Us, a research program that aims to collect DNA, electronic health records, and other data, from about one million Americans with emphasis on including many different groups of people.

“When we do genetic studies, trying to understand the genetic basis of common and complex diseases, we’re getting a biased snapshot,” said Alicia Martin, a geneticist at the Massachusetts General Hospital and the Broad Institute, a biomedical and genomics research center affiliated with Harvard and MIT.

Read the rest of this discussion piece

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

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