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

Ethical Guidelines for Observational Studies0

Posted by Admin in on October 11, 2018
 

Foreword to the 2012 edition
These Guidelines were first released in 2006; the current document is a revision. The Health Committee’s inquiry into improving New Zealand’s environment to support innovation through clinical trials (June 2011) resulted in significant changes to the ethics review process, as reflected in the revised Standard Operating Procedures (SOPs) for Health and Disability Ethics Committees.

This 2012 revision aims to provide consistency with the SOPs. These Guidelines have been updated to remove process guidance, and ensure that policy previously included in the Operational Standard for Ethics Committees is now addressed by these Guidelines. The revision did not fundamentally change the existing ethical standards and principles set out in these Guidelines.

As previously, the Guidelines are directed primarily to investigators, who have the main ethical responsibility for good study conduct. But the Guidelines also continue to be directed to others with a role in health and disability research ethics – particularly the ethics committees that review studies against established ethical standards. The key objectives of developing national ethical guidelines are to…

Contents

Foreword to the 2012 edition iii
Foreword to the 2006 edition iv

1 Introduction 1

2 Guidelines scope and definitions 3
Types of observational research 3
Types of audit or related activity 4

3 Ethics of observational studies 6
Worth of observational studies 6
Ethical requirements of observational studies 6

4 Underlying ethical considerations 8
Respect for people 8
Māori and ethical considerations 8
Justice 9
Beneficence and non-maleficence 9
Integrity 10
Diversity 10
Conflict of interest 10

5 Design of study and protocol 11
Study question 11
Study design 11
Scientifically sound 11
Skills and resources 12
Protocol 12

6 Collecting health information 13
Identifiability of health information 13
Collection of health information directly from individuals 14
Collection of health information from a third party 18

7 Use of information 20

8 Confidentiality of data 21
General considerations 21
Record linkage 22

9 When to reveal information obtained by observational studies 23

10 Communicating study results 24

11 Features of observational studies that pose more than minimal risk 25

12 Additional points 27
Bibliography 28

Appendix:
Joint Health Research Council and NEAC guidance on features of robust peer review for assessing the scientific validity of research 30

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Practical, Epistemological, and Ethical Challenges of Participatory Action Research: A Cross-Disciplinary Review of the Literature (Papers: Danielle Lake and Joel Wendland | 2018)0

Posted by Admin in on October 9, 2018
 

Abstract
This article extends recent discussions on the practical, epistemological, and ethical challenges of participatory action research (PAR) for community-engaged scholars through a cross-disciplinary literature review. It focuses on how practitioners across fields define power, engage with conventional research approval processes, and manage risk. The review demonstrates that PAR can be a valuable research approach for community-engaged scholars, but problematic practices and disparities must be addressed. For instance, although PAR practitioners consistently articulate a commitment to empowering the community and shifting structures of oppression, contradictions around how to define and respond to power, engage with standard IRB practices, and cope with high levels of risk are prevalent. We conclude by offering a set of recommendations, highlighting the need for more transparent and self-reflexive methods; transdisciplinary practices; metrics designed to assess risk, inclusion, and power-sharing; ongoing dialogues across disciplinary and institutional divides; and inclusive authorship and open-access publishing practices.

Keywords: participatory action research, ethical challenges, interdisciplinarity, institutional

LAKE, Danielle; WENDLAND, Joel. Practical, Epistemological, and Ethical Challenges of Participatory Action Research: A Cross-Disciplinary Review of the Literature. Journal of Higher Education Outreach and Engagement, [S.l.], v. 22, n. 3, p. 11-42, sep. 2018. ISSN 2164-8212. Available at: http://openjournals.libs.uga.edu/index.php/jheoe/article/view/2093>.

Te Mana Raraunga Statement on 2018 New Zealand Census of Population and Dwellings: A Call for Action on Māori Census Data0

Posted by Admin in on July 24, 2018
 

The five-yearly Census of Population and Dwellings is the flagship of the Official Statistics System (OSS) and is essential for many of the functions that underpin democracy. Te Mana Raraunga, the Māori Data Sovereignty Network, is concerned that Census 2018 may fail to deliver high quality Māori and iwi data. Te Mana Raraunga supports a comprehensive independent review of Census 2018 and calls for Māori governance of Māori data across the entire Official Statistics System.

National data collections, such as population censuses, are critical sources from which we reach conclusions about the nature of our society on a number of fronts. These perspectives are frequently used to develop and shape interventions (often) in the form of socio-economic policies that are used to promote social incentives and provide solutions to social problems such as poverty, and social inequality. But when data collections fall short in terms of level accuracy and completeness then there are serious consequences for the credibility of the processes referred to above. Poorly run censuses might not only yield compromised results but could also have an impact on public trust of government data and decision-making.
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The failings of the 2018 New Zealand Census with respect to data on Maori presents obvious ethical challenges especially with regard to the incapacity to deal effectively with matters of social injustice and inequality so often suffered by indigenous peoples. Te Mana Raraunga has put together a press release and a more detailed technical statement on Census 2018. The two comments describe these concerns in more detail.
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Australia’s recent experience with census collection demonstrates that poor data collection practices can completely undermine public trust in large scale e data collection.
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Further discussion of Indigenous Data Sovereignty can be found here.

Problems with the 2018 Census and Stats NZ response

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Interim figures for the 2018 Census released by Stats NZ indicate that full or partial information has only been received for about 90 percent of individuals, compared with 94.5 percent for the 2013 Census1. Given that a key goal of the census is to count all usual residents in the country on census night2, commentators are rightly concerned that up to ten percent of the population may be missing3. For Māori, the extent of the problem will inevitably be worse. Census 2018 may yet turn out to be the poorest quality enumeration of Māori in recent history.
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But how poor? Stats NZ will not have a definitive answer for some months yet but the early signs are not positive. Let’s begin with the ‘full or partial’ information received by 90 percent of individuals. One might have the impression that ‘partial’ information means incomplete information on an individual’s census form. However, as used by Stats NZ, ‘partial’ information appears to mean a partial-response dwelling where there is no individual form but the dwelling form or household summary page has a list of people at the dwelling on census night4. We do not yet know what share of the 90 percent comprises partial-response dwellings, however we can gain some insight by considering the 2013 results. While recent Stats NZ releases report full or partial informaton was received for 94.5 percent5 of individuals for the 2013 Census, the total (or achieved) response rate was 92.9 percent6. The lower, and more informative, figure excludes all individuals in partly and completely missing households in 2013, as well as the 2.4 percent estimated national net undercount (coverage level) determined by the Post Enumeration Survey7 undertaken after the 2013 Census. Stats NZ has also noted that for Census 2018 ‘there are more households where no one has responded to the census than previous censuses’.
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What does all of this mean for Census 2018? It means that the total response rate will inevitably be below 90 per cent. For Māori, the 2018 total response rate will be be significantly below 90 per cent. The crucial question is, how much lower? And at what point does this seriously compromise the quality and usefulness of the census data? To date Stats NZ has not provided any guidance on these important questions but needs to.
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Constitutional and other implications for Māori
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Recently Stats NZ announced that: ‘New Zealanders can be confident the 2018 Census will produce accurate and high-quality data which can be relied on by communities and decision-makers’9. We question whether this will be the case for Māori communities, iwi and Māori decision-makers.
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(New Zealand) Consultation on new Code of Professional Standards and Ethics (Royal Society | March 2018)0

Posted by Admin in on March 23, 2018
 

We are seeking submissions on a revised version of our Code of Professional Standards and Ethics in Science, Technology, and the Humanities. Submissions close 14 May 2018

Under our Act we are required to establish and administer a code of professional standards and ethics for our Members. This Code is widely regarded as a point of reference in the Aotearoa New Zealand research and scholarly community.

Our Code has been under revision to address several issues:

  • to better recognise all relevant research methodologies and knowledge systems in Aotearoa New Zealand…

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