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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Google health-data scandal spooks researchers – Science (Heidi Ledford | November 2019)0

Posted by Admin in on January 12, 2020
 

Scientists fear the controversy over the Nightingale project will undermine trust in research.

Google and one of the largest health-care networks in the United States are embroiled in a data-privacy controversy that researchers fear could jeopardize public trust in data-sharing practices and, potentially, academic studies.

At issue is a project dubbed Nightingale that gives Google access to the health-care information, including names and other identifiable data, of tens of millions of people without their knowledge. The people were treated at facilities run by the health network Ascension, which is based in St Louis, Missouri.

Google says that Nightingale, first reported in The Wall Street Journal on 11 November, is meant to develop technology that would enable Ascension to deliver improved health care.

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China Uses DNA to Map Faces, With Help From the West – New York Times ( Sui-Lee Wee & Paul Mozur | December 2019)0

Posted by Admin in on January 9, 2020
 

TUMXUK, China — In a dusty city in the Xinjiang region on China’s western frontier, the authorities are testing the rules of science.

Does your institutional guidance material speak to situations such as this, including secondary use that could present a risk to a population of people?  Do you have mechanisms to manage institutional conflicts of interest?  If not, this story highlights why such arrangements could be important.

With a million or more ethnic Uighurs and others from predominantly Muslim minority groups swept up in detentions across Xinjiang, officials in Tumxuk have gathered blood samples from hundreds of Uighurs — part of a mass DNA collection effort dogged by questions about consent and how the data will be used.
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In Tumxuk, at least, there is a partial answer: Chinese scientists are trying to find a way to use a DNA sample to create an image of a person’s face.
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The technology, which is also being developed in the United States and elsewhere, is in the early stages of development and can produce rough pictures good enough only to narrow a manhunt or perhaps eliminate suspects. But given the crackdown in Xinjiang, experts on ethics in science worry that China is building a tool that could be used to justify and intensify racial profiling and other state discrimination against Uighurs.
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Misrepresenting “Usual Care” in Research: An Ethical and Scientific Error (Papers: Ruth Macklin, Charles Natanson | January 2020)0

Posted by Admin in on January 7, 2020
 

Abstract
Comparative effectiveness studies, referred to here as “usual-care” trials, seek to compare current medical practices for the same medical condition. Such studies are presumed to be safe and involve only minimal risks. However, that presumption may be flawed if the trial design contains “unusual” care, resulting in potential risks to subjects and inaccurately informed consent. Three case studies described here did not rely on clinical evidence to ascertain contemporaneous practice. As a result, the investigators drew inaccurate conclusions, misinformed research participants, and subjects’ safety was compromised. Before approving usual-care protocols, IRBs and scientific review committees should evaluate the quality and completeness of information documenting usual-care practices. Guidance from governmental oversight agencies regarding evidence-based documentation of current clinical practice could prevent similar occurrences in future usual-care trials. Accurate information is necessary to ensure that trials comply with government regulations that require minimizing research risks to subjects and accurate informed consent documents.

KEYWORDS:
Human subjects research; IRB (Institutional Review Board); informed consent; risk/benefit analysis

Macklin, R. & Natanson, C. (2019) Misrepresenting “Usual Care” in Research: An Ethical and Scientific Error. Americaan Journal of Bioethics. 20(1):31-39. doi: 10.1080/15265161.2019.1687777.
Publisher: https://www.tandfonline.com/doi/full/10.1080/15265161.2019.1687777

Reasoning “Uncharted Territory”: Notions of Expertise Within Ethics Review Panels Assessing Research Use of Social Media (Papers: Chelsea Sellers, et al | February 2019 )0

Posted by Admin in on January 5, 2020
 

Abstract

Of late, AHRECS has been asked numerous times to conduct professional development for HREC members, and in-meeting briefings on online research.  But committee expertise on project designs is an important general point to make.  For example: If an HREC doesn’t have access to someone (or more than one) who has run a clinical trial or been involved in trials groups and trial management then they have insufficient expertise to review trials.  During the preparation of a meeting agenda, the Chair and Secretary should discuss the committee’s relevant expertise and needs.

The fast changing field of social media (SM) research presents unique challenges for research ethics committees (RECs). This article examines notions of experience and expertise in the context of REC members reviewing proposals for SM research and considers the role of the RECs in this area of review. We analyze 19 interviews with REC members to highlight that a lack of personal and professional experience of SM, compounded by a lack of institutional and professional guidelines, mean many REC members feel they do not possess sufficient expertise to review SM research. This view was supported by 14 interviews with SM researchers. REC members drew on strategies to overcome their lack of experience, although most SM researchers still found this problematic, to varying degrees. We recommend several steps to ensure REC expertise in SM research keeps pace of this fast-developing field, taking a pro-active, dialogic approach.

Keywords
social media, research ethics committee, ethics, experience, expertise

Samuel, G. N., Samuel, G. and Derrick, G. (2019). Civil society stakeholder views on forensic DNA phenotyping: balancing risks and benefits. Special Issue: Ethical Issues in Social Media Research
Publisher (Open Access): https://journals.sagepub.com/doi/pdf/10.1177/1556264619837088

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