ACN - 101321555 Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)
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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Keeping research on track II0

Posted by Admin in on August 2, 2018
 

This guideline aims to support research participants, Aboriginal and Torres Strait Islander Peoples and communities to:

  • Make decisions that ensure the research journey respects Aboriginal and Torres Strait Islander Peoples’ and communities’ shared values, diversity, priorities, needs and aspirations.
  • Make decisions that ensure the research journey benefits Aboriginal and Torres Strait Islander people and communities as well as researchers and other Australians.
  • Recognise and understand their rights and responsibilities in being involved in all aspects of research.
  • Better understand the steps involved in making research ethical.

The information in this guideline comes from two key national publications which set out the requirements for the ethical conduct of research:

  • National Statement on Ethical Conduct in Human Research (the National Statement)
    The National Statement is the principal guideline setting out the requirements for the ethical design, review and conduct of all human research in Australia. The National Statement is about four main principles: respect; research merit and integrity; justice; and beneficence. The National Statement provides guidance on the ethical considerations that are relevant to the way that research is designed, reviewed and conducted.

Read the rest of this guidance material

Indigenous Data Sovereignty (Books: Edited by Tahu Kukutai and John Taylor | November 2016)0

Posted by Admin in on August 2, 2018
 

As the global ‘data revolution’ accelerates, how can the data rights and interests of indigenous peoples be secured? Premised on the United Nations Declaration on the Rights of Indigenous Peoples, this book argues that indigenous peoples have inherent and inalienable rights relating to the collection, ownership and application of data about them, and about their lifeways and territories. As the first book to focus on indigenous data sovereignty, it asks: what does data sovereignty mean for indigenous peoples, and how is it being used in their pursuit of self-determination?

The varied group of mostly indigenous contributors theorise and conceptualise this fast-emerging field and present case studies that illustrate the challenges and opportunities involved. These range from indigenous communities grappling with issues of identity, governance and development, to national governments and NGOs seeking to formulate a response to indigenous demands for data ownership. While the book is focused on the CANZUS states of Canada, Australia, Aotearoa/New Zealand and the United States, much of the content and discussion will be of interest and practical value to a broader global audience.

‘A debate-shaping book … it speaks to a fast-emerging field; it has a lot of important things to say; and the timing is right.’ 
— Stephen Cornell, Professor of Sociology and Faculty Chair of the Native Nations Institute, University of Arizona

‘The effort … in this book to theorise and conceptualise data sovereignty and its links to the realisation of the rights of indigenous peoples is pioneering and laudable.’ 
— Victoria Tauli-Corpuz, UN Special Rapporteur on the Rights of Indigenous Peoples, Baguio City, Philippines

Kukutai, T and Taylor, J (2016) Indigenous Data Sovereignty: Toward an agenda. ANU Press. https://press.anu.edu.au/publications/series/centre-aboriginal-economic-policy-research-caepr/indigenous-data-sovereignty

Publisher (Free to download): https://press.anu.edu.au/publications/series/centre-aboriginal-economic-policy-research-caepr/indigenous-data-sovereignty

Systems Matter: Research Environments and Institutional Integrity – Harvard Law (Petrie-Flom Center | May 2018)0

Posted by Admin in on July 25, 2018
 

This post is part of a series on emerging research challenges and solutions. The introduction to the series is available here, and all posts in the series are available here.

By CK Gu¬nsalus, Director, National Center for Professional and Research Ethics (NCPRE), University of Illinois Urbana-Champaign

This item is great reading for institutions considering the effectiveness of their research integrity arrangements (which all Australian institution should be doing, or gearing up to do as part of our implementation of the Australian Code (2018). While there’s nothing new per se it’s a great prompt for effective practice).

We know what it takes for institutions and scholars to produce high-quality, high-integrity research, and yet we do not always act upon that knowledge. As far back as 1988, Paul J. Friedman described both the roots of systemic shortcoming and approaches for conducting trustworthy research. Despite a clear understanding of the issues and steps that would improve our research and educational environments, the academy continues to be dogged by those same systemic issues. A recent National Academies of Sciences, Engineering and Medicine consensus study, Fostering Integrity in Research, in which I participated as a panel member, explores that same disconnect and makes recommendations. The bottom line is this: we must shift our attention and energy away from individual bad actors—though they exist and must be addressed—and toward the highly complex ecosystem within which research is conducted.
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An update of an earlier appraisal published 1992, the 2017 NASEM report describes the transformation of research through advances in technology, globalization, increased interdisciplinarity, growing competition, and multiplying policy applications. It identifies six core values underlying research integrity—objectivity, openness, accountability, honesty, fairness and stewardship—and outlines best practices, including checklists, for all aspects of the research enterprise. I encourage you to read it and use these tools in your own work.
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All the reports in the world won’t improve research integrity, however, if we don’t do the work in our institutions, departments, and research groups. There are many components to this effort, some of which are discussed in separate posts by my colleagues John P.A. Ioannidis and Barbara A. Spellman elsewhere in this symposium. Let’s focus here on institutional infrastructure.
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Read the rest of this discussion piece

Genome editing and human reproduction (Nuffield Council on Bioethics | July 2018)0

Posted by Admin in on July 19, 2018
 

Foreword
The capacity to select the traits of our future children has long been a central theme in science fiction writing, often solemnly warning of the moral dangers associated with doing so, even when undertaken with the best of intentions. The discovery of DNA, the so-called ‘code of life’, pointed the way towards the scientific avenue through which deliberate intervention to select for desired human traits of future children might be brought about. Yet even after DNA was discovered, the prospect of doing so has remained purely speculative: we simply lacked the scientific knowledge and tools to attempt such a feat. However, as the Council’s 2016 report Genome editing: an ethical review observes, the development of genome editing techniques has been game changing for research across the biosciences, particularly since the emergence of the CRISPR-Cas9 system in 2012, which enabled precisely targeted alterations to DNA sequences in living cells. As a result, deliberately intervening in the human genome for the purposes of selecting traits of future children has now become a real and distinct possibility. The central question which this Report sets out to address is whether such interventions would be ethically acceptable. Our conclusion is that interventions of this kind to influence the characteristics of future generations could be ethically acceptable, provided if, and only if, two principles are satisfied: first, that such interventions are intended to secure, and are consistent with, the welfare of a person who may be born as a consequence, and second, that any such interventions would uphold principles of social justice and solidarity – by this we mean that such interventions should not produce or exacerbate social division, ormarginalise or disadvantage groups in society.

While this document isn’t specifically about human research ethics/research ethics review we thought the report could be of interest to research ethics reviewers and researchers.

In order to arrive at this conclusion, our approach begins by asking: what is the societal challenge for which deliberate attempts to edit the human genome in the context of reproduction might respond? Put differently, we ask (somewhat more crudely), why might heritable human genome editing be understood as a valuable and worthwhile response to a societal problem? The answer offered in this report centres on the reproductive choices of prospective parents and the preferences they may express for their future child. In the most obvious cases, this may be to take steps that will reduce the prospect of their future child inheriting a genetic disorder. But there is potential for genome editing to be used in a wider variety of more common circumstances, and for a wider range of purposes that may be unrelated to the avoidance of medical diseases or disorders. Our view is that the two guiding principles that condition the ethical acceptability of genome editing in the context of reproduction should orient ethical evaluation and are applicable to the full range of potential motivations for wishing to undertake such interventions. In the UK, genome editing for reproductive purposes is currently unlawful. We make several recommendations concerning how deliberate interventions into the human genome should be governed, including recommendations concerning what we think is needed prior to any move to amend UK legislation to permit heritable genome editing. In particular, we conclude that no such change should be broached without consideration of whether it can be ensured that any proposed use would conform to these two ethical principles: the principle of the welfare of the future person and the principle of social justice and solidarity. Although the prospect of such a move remains a very long way off and, indeed, might never arrive, we nevertheless emphasise the need for broad, inclusive societal debate concerning the desirability of such interventions to take placesooner rather than later, in order to produce an understanding of the public interest, and for engagement with other countries and international organisations to help develop international norms for the law and governance of genome editing.
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When I was asked to take on the role of Chair in the summer of 2016, my initial instinct was to decline the invitation. Because the moral acceptability of intervening in the human germ line with the aim of affecting the traits of future children is highly contested, often engaging deeply held views, I was acutely aware that, whatever conclusions the working party arrived at, some people were bound to oppose and even abhor them. In other words, I recognised that by taking up the role, I would be taking up something of a poisoned chalice. At the same time, I had not arrived at my own personal view about the ethical acceptability or otherwise of heritable genome editing, particularly in light of my own experience of the unique and extraordinary role of being, and the process of becoming, a parent of children created within my body to whom I had given birth. My reluctance to take up the role of Chair was partly, perhaps, a product of recognising that, in order to arrive at a position, one must inevitably confront some intractable and insoluble questions including, among other things, questions concerning the significance and sanctity of what it means to be human, and how properly to comprehend the unique character of the parent-child relationship. Accordingly, intentional attempts to intervene in thehuman germ line might affect our responses to those questions, and to that meaning and character, for good or for ill. Nevertheless, I overcame my initial reluctance to accept the role of Chair, recognising – as I have often counselled my students – that the difficulty, complexity and contestability surrounding a set of questions are not good reasons to shy away from attempting to grapple with them. This is all the more so when the questions are real, important and can have tangible and profound consequences for the lives of individuals and for society more generally.
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Access the report web page
Download a PDF copy of the report

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