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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

The picture talk project: Aboriginal community input on consent for research (Papers: Emily FM Fitzpatrick, et al | 2019)0

Posted by Admin in on February 3, 2019
 

Abstract

Background
The consent and community engagement process for research with Indigenous communities is rarely evaluated. Research protocols are not always collaborative, inclusive or culturally respectful. If participants do not trust or understand the research, selection bias may occur in recruitment, affecting study results potentially denying participants the opportunity to provide more knowledge and greater understanding about their community. Poorly informed consent can also harm the individual participant and the community as a whole.

Methods
Invited by local Aboriginal community leaders of the Fitzroy Valley, the Kimberley, Western Australia, The Picture Talk project explores the consent process for research. Focus groups of Aboriginal community members were conducted to establish preferences for methods of seeking individual consent. Transcripts were analysed through NVivo10 Qualitative software using grounded theory with inductive and deductive coding. Themes were synthesised with quotes highlighted.

Results
Focus groups with Aboriginal community members (n = 6 focus groups of 3–7 participants) were facilitated by a Community Navigator as a cultural guide and interpreter and a researcher. Participants were recruited from all main language groups of the Fitzroy Valley – Gooniyandi, Walmajarri, Wangkatjungka, Bunuba and Nikinya. Participants were aged ≥18 years, with 5 female groups and one male group. Themes identified include: Reputation and trust is essential; The Community Navigator is key; Pictures give the words meaning – milli milli versus Pictures; Achieving consensus in circles; Signing for consent; and Research is needed in the Valley.

Conclusion
Aboriginal communities of the Fitzroy Valley recommend that researchers collaborate with local leaders, develop trust and foster a good reputation in the community prior to research. Local Aboriginal researchers should be employed to provide cultural guidance throughout the research process and interpret local languages especially for elders. Pictures are preferred to written text to explain research information and most prefer to sign for consent. The Fitzroy Valley welcomes research when collaborative and for the benefit of the community. Future research could include exploring how to support young people, promote health screening and improve understanding of medical knowledge.

Keywords
Research, Consent, Qualitative Methods, Aboriginal, Indigenous, Community, Focus Groups, Pictures, Yarning

Fitzpatrick EFM, Carter M, Oscar J, D’Antoine H, Carter M, Lawford T and Elliott EJ (2019) The picture talk project: Aboriginal community input on consent for research. BMC Medical Ethics (2019) 20:12 https://doi.org/10.1186/s12910-019-0349-y
Publisher (Open Access):  https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-019-0349-y

Ethics & Human Research (E&HR)0

Posted by Admin in on January 25, 2019
 

Editor’s note:
The inaugural issue of Ethics & Human Research (E&HR) marks an exciting milestone in The Hastings Centers’ 40‐year history of publishing a journal that focuses on the ethical, regulatory, and policy issues related to research with humans. Like its predecessor, IRB: Ethics & Human Research, E&HR will publish conceptual and empirical analyses on a wide range of topics related to the human research enterprise.

The journal’s name change conveys to the global community of authors and readers that E&HR is not solely about issues related to institutional review boards (IRBs) in the United States. The title shift provides an opportunity to identify new ethical, policy, and regulatory challenges that rapid developments in science, medicine, and regulatory frameworks bring to the conduct and oversight of human subjects research in the United States and elsewhere. Along with publishing work that investigates new challenges, E&HR aims not only to draw attention to unresolved issues but also to broaden the scope of issues for investigation and analysis in the field of human research ethics. The pieces in this inaugural issue identify several new challenges and hint at some of the unresolved issues and broader topics that merit further attention.

In the lead article, about phase I clinical trials with healthy volunteers, Jill Fisher and Rebecca Walker propose adapting the ethical concepts and oversight mechanisms that are applied to research with nonhuman animals to enhance the welfare of healthy human volunteers in such trials, improve oversight of the trials, and more critically assess their scientific value. For example, using a “model‐organism” approach to advance the ethical framework for phase I healthy‐volunteer trials would draw attention to shared structural features of animal and human research. As is the case with animal subjects, human participants in healthy‐volunteer trials are typically confined at a research facility. Participants in these trials cannot leave the study site during the duration of the trial—which can last 24 hours or more—unless they withdraw from the study. While animal research regulations require adherence to specific health and welfare conditions for the confinement of animals used in research, the authors point to gaps in ethics and regulatory standards on these matters for the confinement of healthy human volunteers in phase I trials.

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Research ethics: How to Treat People who Participate in Research – NIH (Ezekiel Emanuel, et al | nd)0

Posted by Admin in on January 23, 2019
 

Excerpt from a commentary written by Gary Allen and Mark Israel.

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Finding a free and polished human research ethics resource from a highly reputable source should be cause for celebration and so its inclusion in an institutional resource library might seem to be a foregone conclusion.
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But…
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In this case, AHRECS also suggests caution. We think that, like many international sources of advice, it calls for some local commentary, so the brochure does not have an unexpected negative impact. There is nothing egregious about this document; it may be a really good source of advice for medical research in the United States. Our concern is about the uncritical adoption of such work across disciplines, methodologies and countries.
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The full commentary is available to USD1/month AHRECS patrons.

Introduction
In Alabama from the 1930s to 1970s, researchers recruited black men to participate in a study of syphilis – a terrible disease that can cause disability and death. The researchers told the men participating that they were getting medical treatment, even though they were not. in fact, when the study began syphilis was untreatable. the researchers instead wanted to study what syphilis does to the body over time. after World War ii, when a treatment – penicillin – was available for syphilis, the researchers kept the men from receiving it because they wanted to study what happened as the disease got worse. What makes this study – the Tuskegee Syphilis Study – unethical? What is wrong with the way the researchers acted?
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A human exercise experiment or class survey designed by a student for a science fair seems very different from the tuskegee syphilis study. however, is there anything about student studies that might raise ethical concerns?
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Human subjects research is exactly what it sounds like. it is research that uses people as the subjects of experiments or studies. it can include giving people new drugs, doing tests on their blood, even having them take surveys. Researchers have a duty to treat the people they study ethically and respectfully. in particular, it is important to make sure that researchers do not exploit their subjects. Exploitation is addressed further on page 9. unfortunately, as the Tuskegee Syphilis Study shows, some people were treated.
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Unfortunately, as the Tuskegee Syphilis Study shows, some people were treated horribly during research studies in the past. German and Japanese researchers, for instance, conducted terrible experiments on prisoners during World War ii. Many other incidents took place before the 1970s, when some u.s. doctors experimented on hospital patients without telling them or failed to provide medicines that would have treated potentially deadly diseases. Today, there are ethical principles for research to help ensure that people who participate are not harmed and that the scandals of the past do not occur again.these principles even apply to student research projects with humans, and they are important for you to think about as you design experiments.

Access  the brochure

TABLE OF CONTENTS

Introduction 3
Introduction to the 7 Principles 4
Other Important Concepts and Issues 8
Applying the Principles 10
Further Reading

Emanuel, E, Abodler, E. and Stunkel, L. (nd) Research ethics: How to Treat People who Participate in Research. US National Institutes of Health.
https://bioethics.nih.gov/education/FNIH_BioethicsBrochure_WEB.PDF

Research ethics now a strategic priority for doctoral schools – University World News ( Brendan O’Malley | January 2019)0

Posted by Admin in on January 21, 2019
 

Research ethics and integrity has become one of the top strategic priorities in doctoral education in Europe, according to a landscape report published by the European University Association’s Council for Doctoral Education (EUA-CDE), commissioned to examine progress in the reform or professionalisation of doctoral education and the strategic priorities ahead for the sector.

The report of the survey says this is one aspect that points to the increasing relevance of doctoral education for the implementation of research policies within universities.

“In particular, the importance attributed to research ethics and integrity is remarkable: several years ago, this topic rarely showed up in the debates and publications in this area. It shows how important the issue of research ethics and integrity has become for universities in a very short time.”

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