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

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

(China/Gene) Chinese scientist who produced genetically altered babies sentenced to 3 years in jail – Science (Dennis Normile | December 2019)0

Posted by Admin in on January 5, 2020
 

He Jiankui, the Chinese researcher who stunned the world last year by announcing he had helped produce genetically edited babies, has been found guilty of conducting “illegal medical practices” and sentenced to 3 years in prison.

Given the degree of recklessness and premeditation, the lifetime health effects and that the genetic modifications are inheritable, some may feel an even harsher sentence would have been warranted.  Nevertheless, it is welcome to see the Chinese court impose large fines and prison sentences.

A court in Shenzhen found that He and two collaborators forged ethical review documents and misled doctors into unknowingly implanting gene-edited embryos into two women, according to Xinhua, China’s state-run press agency. One mother gave birth to twin girls in November 2018; it has not been made clear when the third baby was born. The court ruled that the three defendants had deliberately violated national regulations on biomedical research and medical ethics, and rashly applied gene-editing technology to human reproductive medicine.
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All three pleaded guilty, according to Xinhua. The court also fined He, formerly of the Southern University of Science and Technology (SUSTech) and known as JK to friends and colleagues, 3 million Chinese yuan ($429,000). His collaborators were identified as Zhang Renli, of a medical institution in Guangdong province, and Qin Jinzhou, from a Shenzhen medical institution; Zhang received a 2-year prison sentence and was fined 1 million yuan, according to Xinhua, whereas Qin was given 18 months in prison with a 2-year reprieve, and a 500,000 yuan fine.
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Read the rest of this news  story

Sample and data sharing barriers in biobanking: consent, committees, and compromises (Paper: Flora Colledge MA, et al | December 2013)0

Posted by Admin in on January 2, 2020
 

Abstract

The discussion in this paper is not particularly new or surprising but it does highlight yet again that HRECs can often be out of touch with donors wishes.  We have included links to ten other papers on consent and biobanking.

The ability to exchange samples and data is crucial for the rapidly growth of biobanking. However, sharing is based on the assumption that the donor has given consent to a given use of her or his sample. Biobanking stakeholders, therefore, must choose 1 of 3 options: obtain general consent enabling multiple future uses before taking a sample from the donor, try to obtain consent again before sharing a previously obtained sample, or look for a legally endorsed way to share a sample without the donor’s consent. In this study, we present the results of 36 semistructured qualitative interviews with Swiss biobanking stakeholders regarding these options and the role of ethics committees in the process of authorizing sharing. Our results show that despite a lack of legal or guideline-based barriers to general consent, some stakeholders and ethics committees have reservations about this method of consent. In most cases, however, a general consent form is already in use. Many interviewees describe processes involving the ethics committees as time-consuming and cumbersome and their requirements as too demanding for donors/patients. Greater awareness of donors’ opinions and preferences and the content of guidelines and recommendations could therefore be helpful for a better justified perspective of biobanking stakeholders and ethical committee members, equally. Finally, it may be necessary to differentiate between procedures governing future samples, where general consent is clearly desirable, and the use of old yet still relevant samples, where the option of using them without consent can be highly beneficial for research.
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Keywords
Biobank, Informed consent, Ethics committee, Data sharing, Sample sharing

Colledge F, Persson K, Elger B, Shaw D. (2014) Sample and data sharing barriers in biobanking: consent, committees, and compromises. Annals of Diagnostic Pathology 18:78-81
Publisher: https://www.sciencedirect.com/science/article/abs/pii/S1092913413001524?via%3Dihub

Holiday funny – New Years resolutions for your research ethics committee0

Posted by Admin in on December 31, 2019
 

Cartoon by Don Mayne www.researchcartoons.com
Full-size image for printing (right mouse click and save file)

Anyone who has served on, supported or observed meetings of research ethics committees will recognise these unhelpful behaviours.  The full-sized version might be a fun and cheeky cover page for your first meeting in the New Year.  Send an email to enquiry@ahrecs.com if you would like to discuss coaching or professional development for your research ethics committee.  This can be done remotely via video link.

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