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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

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

Conducting Accessible Research: Including People With Disabilities in Public Health, Epidemiological, and Outcomes Studies (Papers: Dianne Rios, et al | November 2016)0

Posted by Admin in on July 25, 2019
 

Abstract

People with disabilities are largely absent from mainstream health research. Exclusion of people with disabilities may be explicit, attributable to poorly justified exclusion criteria, or implicit, attributable to inaccessible study documents, interventions, or research measures. Meanwhile, people with disabilities experience poorer health, greater incidence of chronic conditions, and higher health care expenditure than people without disabilities. We outline our approach to “accessible research design”—research accessible to and inclusive of people with disabilities. We describe a model that includes 3 tiers: universal design, accommodations, and modifications. Through our work on several large-scale research studies, we provide pragmatic examples of accessible research design. Making efforts to include people with disabilities in public health, epidemiological, and outcomes studies will enhance the interpretability of findings for a significant patient population.

Rios, D., Magasi, S., Novak, C. & Harniss, M. Conducting Accessible Research: Including People With Disabilities in Public Health, Epidemiological, and Outcomes Studies, American Journal of Public Health 106, no. 12 (December 1, 2016): pp. 2137-2144.
https://doi.org/10.2105/AJPH.2016.303448
Publisher: https://ajph.aphapublications.org/doi/abs/10.2105/AJPH.2016.303448

Journal Publishes Concern About Study Using Forced Organ Donation – Medscape (Diana Swift | June 2019)0

Posted by Admin in on July 21, 2019
 

The Clinical Journal of the American Society of Nephrology (CJASN) recently issued an “Expression of Concern” regarding a 2008 article on renal allograft recipients written by Chinese researchers.

The Expression of Concern stems from an Australian report published online in February in BMJ Open, which urged the repudiation by English-language journals of more than 445 studies involving 85,477 organ transplants done in China. The reason? Many of the organs used were likely forcibly harvested from Chinese prisoners of conscience, such as practitioners of Falun Gong, Uyghurs, Tibetans, and underground Christians.

“We reached out for clarification of the organ source to the senior authors, but one was deceased and the other had left the institution where the research was done,” said CJASN Editor-in-Chief Rajnish Mehrotra, MD, MBBS, a professor of medicine at the David Geffen School of Medicine at University of California Los Angeles.

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