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China approves ethics advisory group after CRISPR-babies scandal – Nature (Hepeng Jia | August 2019)0

Posted by Admin in on August 10, 2019
 

Bioethicists hope a national committee will help close loopholes in the country’s biomedical ethics regulations.

China will establish a national committee to advise the government on research-ethics regulations. The decision comes less than a year after a Chinese scientist sparked an international outcry over claims that he had created the world’s first genome-edited babies.

The country’s most powerful policymaking body, the Central Comprehensively Deepening Reforms Commission of the ruling Chinese Communist Party, headed by President Xi Jinping, approved at the end of last month a plan to form the committee. According to Chinese media, it will strengthen the coordination and implementation of a comprehensive and consistent system of ethics governance for science and technology.

The government has released few details on how the committee will work. But Qiu Renzong, a bioethicist at the Chinese Academy of Social Science in Beijing, says it could help to reduce the fragmentation in biomedical ethics regulations across ministries, identifying loopholes in the enforcement of regulations and advise the government on appropriate punishments for those who violate the rules.

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Using ASCO’s Clinical Database for Commercial Research Raises Questions, Ethicists Say – Medscape (Ellie Kincaid | May 2019)0

Posted by Admin in on August 8, 2019
 

Eleven abstracts of the thousands accepted for publication at this year’s annual meeting of the American Society of Clinical Oncology (ASCO), one of the largest cancer research conferences in the world, draw upon data collected through a nonprofit subsidiary of ASCO that in 4 years has brought together the electronic health records (EHRs) of 1.2 million patients.

The ASCO subsidiary — CancerLinQ — will have its own 1200 square foot booth in prime real estate at the entrance to the meeting’s exhibit hall. It has received data from 48 healthcare institutions to help them improve care for patients and has compiled a treasure trove of data for researchers studying how expensive cancer drugs work for patients in the real world. But ethicists are concerned that CancerLinQ is allowing companies to sell access to the data after they have been stripped of patient identifiers, without asking for patients’ permission.

“I think that the ethics of profiting off of someone else’s information is dicey and at the very least the patient should go in with their eyes open, and that requires informing them,” said Robert Field, PhD, MPH, JD, a professor of law and public health at Drexel University, Philadelphia, Pennsylvania.

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Participants’ Understanding of Informed Consent for Biobanking: A Systematic Review (Papers: Elizabeth R. Eisenhauer, et al | 2017)0

Posted by Admin in on August 7, 2019
 

Abstract
Nurses are increasingly asked to obtain consent from participants for biobanking studies. Biobanking has added unique complexities to informed consent. The purpose of this systematic review was to evaluate participants’ level of understanding of the information presented during the informed consent process unique to the donation of biological specimens for research. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were utilized to conduct the review. PubMed, EMBASE, CINAHL, PsycINFO, Scopus, Web of Science, and ProQuest bibliographic databases were searched. Results indicated that elements of informed consent unique to biobanking were poorly understood. Most studies had authors or funding associated with a biobank. Only one study disclosed and assessed participants’ understanding of moral risks. Increased disclosures, values-clarification, and presenting information via multiple modalities may facilitate understanding. There is a need to improve the quality of informed consent for biobanking studies by utilizing standardized instruments, definitions, and encouraging research about informed choice outside the biobanking industry.

Keywords
biological specimen banks, biobanking, informed consent, moral risks, understanding

Eisenhauer, E. R., Tait, A. R., Rieh, S., Y. & Arslanian-Engoren, C., M. (2017) Participants’ understanding of informed consent for biobanking: a systematic review. Clinical Nursing Research. 28(1) pp30-51
Publisher: https://journals.sagepub.com/doi/10.1177/1054773817722690

Knowledge and motivations of researchers publishing in presumed predatory journals: a survey (Papers: Kelly D Cobey, et al | March 2019)0

Posted by Admin in on July 27, 2019
 

Abstract
Objectives
To develop effective interventions to prevent publishing in presumed predatory journals (ie, journals that display deceptive characteristics, markers or data that cannot be verified), it is helpful to understand the motivations and experiences of those who have published in these journals.

Design
An online survey delivered to two sets of corresponding authors containing demographic information, and questions about researchers’ perceptions of publishing in the presumed predatory journal, type of article processing fees paid and the quality of peer review received. The survey also asked six open-ended items about researchers’ motivations and experiences.

Participants
Using Beall’s lists, we identified two groups of individuals who had published empirical articles in biomedical journals that were presumed to be predatory.

Results
Eighty-two authors partially responded (~14% response rate (11.4%[44/386] from the initial sample, 19.3%[38/197] from second sample) to our survey. The top three countries represented were India (n=21, 25.9%), USA (n=17, 21.0%) and Ethiopia (n=5, 6.2%). Three participants (3.9%) thought the journal they published in was predatory at the time of article submission. The majority of participants first encountered the journal via an email invitation to submit an article (n=32, 41.0%), or through an online search to find a journal with relevant scope (n=22, 28.2%). Most participants indicated their study received peer review (n=65, 83.3%) and that this was helpful and substantive (n=51, 79.7%). More than a third (n=32, 45.1%) indicated they did not pay fees to publish.

Conclusions
This work provides some evidence to inform policy to prevent future research from being published in predatory journals. Our research suggests that common views about predatory journals (eg, no peer review) may not always be true, and that a grey zone between legitimate and presumed predatory journals exists. These results are based on self-reports and may be biased thus limiting their interpretation.

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial

Cobey KD, Grudniewicz A, Lalu MM, et al Knowledge and motivations of researchers publishing in presumed predatory journals: a survey. BMJ Open 2019;9:e026516. doi: 10.1136/bmjopen-2018-026516
Publisher (Open Access): https://bmjopen.bmj.com/content/9/3/e026516

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