scholarly journals Views of university students in Jordan towards Biobanking

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Faisal Khatib ◽  
Dayana Jibrin ◽  
Joud Al-Majali ◽  
Mira Elhussieni ◽  
Sharifeh Almasaid ◽  
...  
Keyword(s):  
Informed Consent ◽  
Biomedical Research ◽  
Willingness To Participate ◽  
Online Questionnaire ◽  
Research Results ◽  
Factors Associated ◽  
Majority Students ◽  
Primary Means ◽  
The University ◽  
Negative Connotation

Abstract Background Biobanks are considered primary means+ of supporting contemporary research, in order to deliver personalized and precise diagnostics with public acceptance and participation as a cornerstone for their success. Aims This study aims to assess knowledge, perception, and attitudes towards biomedical research and biobanking among students at the University of Jordan. Methodology An online questionnaire was designed, developed, and piloted. It was divided into 5 sections that included questions related to issues of biomedical research and biobanking as well as factors influencing the decision to participate. Results Responses from 435 students revealed that 52.9% previously heard of biobanks. There was an overwhelming acceptance for participation in biomedical, genetic, and biobanking research. A blood sample was the most preferred for donation. Protection of privacy, informed consent prior to donation, approval of an ethics committee, and trust towards researchers were the most important factors associated with willingness to participate. On the other hand, the vagueness of the type of research performed on the biospecimens and the unavailability of general research results to the donor had a negative connotation. There was no clear agreement on the type of informed consent preferred by students, but to be contacted and informed of research results was preferred by the majority. Students also preferred the disposal of biospecimens and information when deciding to withdraw from participation. Conclusion There is strong enthusiasm among students to participate in biomedical research and biobanking with all rights reserved thus providing hope for a very promising future in Jordan.

scholarly journals Views of University Students in Jordan towards Biobanking

2020 ◽  
Author(s):  
Faisal Khatib ◽  
Dayana Jibrin ◽  
Joud Al-Majali ◽  
Mira Elhussieni ◽  
Sharifeh Almasaid ◽  
...  
Keyword(s):  
Biomedical Research ◽  
Ethics Committee ◽  
Willingness To Participate ◽  
Online Questionnaire ◽  
Research Results ◽  
Factors Associated ◽  
Factors Influencing ◽  
Majority Students ◽  
The University ◽  
Negative Connotation

Abstract BackgroundBiobanks are considered a primary mean of supporting contemporary research, in order to deliver personalized and precise diagnostics with public acceptance and participation as a corner stone for their success.AimsThis study aims to assess knowledge, perception, and attitudes towards biomedical research and biobanking among students at the University of Jordan.MethodologyAn online questionnaire was designed, developed, and piloted. It was divided into 5 sections that included questions related to issues of biomedical research and biobanking as well as factors influencing decision to participate.ResultsResponses from 435 students revealed that 52.9% previously heard of biobanks. There was overwhelming acceptance for participation in biomedical, genetic, and biobanking research. A blood sample was the most preferred for donation. Protection of privacy, a consent prior to donation, approval of an ethics committee, and trust towards researchers were the most important factors associated with willingness to participate. On the other hand, vagueness of the type of research performed on samples and not receiving research results had a negative connotation. There was no clear agreement on the type of consent preferred by students, but to be contacted and informed of research results was preferred by the majority. Students also preferred disposal of samples and information when deciding to withdraw from participation.ConclusionThere is strong enthusiasm among students to participate in biomedical research and biobanking with all rights reserved thus providing hope for a very promising future in Jordan.

How Informed Is Informed Consent?

Blood ◽  
2010 ◽  
Vol 116 (21) ◽  
pp. 2556-2556
Author(s):  
Karl Desch ◽  
Jun Z. Li ◽  
Scott Kim ◽  
Naomi Laventhal ◽  
David Siemieniak ◽  
...  
Keyword(s):  
Informed Consent ◽  
Biomedical Research ◽  
Reading Time ◽  
Conflicts Of Interest ◽  
Clinical Care ◽  
Informed Consent Process ◽  
Low Risk ◽  
Consent Process ◽  
University Of Michigan ◽  
The University

Abstract Abstract 2556 The informed consent process is a critical component of human subject protection in biomedical research, with the goals of informing participants of the purpose of the study, as well as the likely risks, benefits and alternatives. The signed informed consent document (ICD) is a required legal disclosure which documents that the informed consent process has taken place and provides research subjects with comprehensive information about their role in a study. Despite efforts to optimize the ICD, only limited data are available regarding the utilization of these documents by participants in biomedical research. We measured the time taken by participants, in a genetic study of hematologic traits, to review a 2833 word online ICD prior to indicating consent. ICDs were generated utilizing standard templates provided by the University of Michigan IRB with the addition of a hyperlink at word 2254 of the ICD that read “If you are reading this form, please click on this sentence”. Identification of the hyperlink, as a proxy for thorough reading of the ICD, was recorded. The study was approved by the University of Michigan IRB (IRBMED# 2005-0080.) A total of 1209 subjects were recruited from the University of Michigan, Ann Arbor student population from 2/12/08 to 1/30/09. Age ranged from 14 to 35 years with a mean of 21. Standard reading speeds predicted a range of 567 to 850 seconds to read the full ICD text. The distribution of consent times was heterogeneous, heavily weighted toward times that would suggest little to no reading of the ICD. Twenty-eight percent of participants consented within ten seconds. Only 78 participants (6.4%) took longer than the minimum estimated reading time (566 seconds) to indicate consent. The hyperlink was identified by 2.2% of participants with a median reading time of 621 seconds, significantly longer than those who did not (52 seconds, p<3×10−11). Additionally, significant differences in consent time were noted for sex, age, and downloading of the ICD PDF file. Our results demonstrate that the majority of participants in this study (93.6%) provided consent without spending sufficient time to thoroughly read and comprehend the ICD. The 6.4% of participants with consent times greater than the minimum predicted ICD reading times is likely a significant overestimate of ICD comprehension since the consent interval recorded could also include time spent on other distracting activities. In conclusion, these observations imply that the consent by subjects to participate in this and many other low-risk studies is unlikely to have been as truly informed as originally intended by the investigators and the IRB. This lack of truly informed consent is also likely to extend beyond research studies, to include ICDs used for treatment in the routine clinical care setting. These data suggest that current ICDs, particularly for low-risk studies, may no longer serve the intended informed consent purpose and that ICD length and complexity should be reassessed. Disclosures: No relevant conflicts of interest to declare.

scholarly journals Negotiating informed consent: A students-as-partners perspective

2020 ◽  
Vol 4 (2) ◽  
pp. 132-137
Author(s):  
J. Michael Rifenburg ◽  
Emily Pridgen
Keyword(s):  
Informed Consent ◽  
Research Process ◽  
Central Place ◽  
Lead Author ◽  
Willingness To Participate ◽  
College Level ◽  
Research Participants ◽  
Consent Document ◽  
English Major ◽  
The University

Building on our 2019 ISSOTL poster presentation, we (Michael: a tenured English Department faculty member; and Emily: an undergraduate English major) are developing a reflective essay about our in-progress SaP project designed to assess the effectiveness of recent university system mandated curricular changes to multiple sections of an introductory college-level writing course at our home institution, the University of North Georgia, USA. Even though we received the necessary institutional and federal government permissions to conduct this research, and even though the research participants signed the necessary informed consent document, as we continue our data collection we wonder how we might better listen and watch for what Bivens (2018) calls “microwithdrawals of consent.” Bivens describes this phenomenon as the “implied or partial halt of a person’s willingness to participate in one or more aspects of the research process and the researcher’s awareness of that withdrawal.” Bivens calls on researchers to stay attuned to the participant’s body language and vocal tone to notice when participants may want to withdraw consent but not explicitly say so. When undergraduate researchers conduct interviews with other undergraduates, they are well-positioned to perceive these microwithdrawals of consent. With Emily as the lead author for this proposed piece, we wonder: How can students working in partnership with faculty help faculty better understand how informed consent is an on-going and negotiated process that does not end when research participants sign a consent document? Pondering this question emphasizes the “messy, ‘work in progress’ nature of SaP” (Matthews, 2017, p. 4), which, we argue should hold a central place in our SaP publications.

scholarly journals Onset of depressive symptomatology in a sample of university students

2018 ◽  
Vol 10 (1) ◽  
Author(s):  
Omar Enzo Santangelo ◽  
Sandro Provenzano ◽  
Dario Piazza ◽  
Alberto Firenze
Keyword(s):  
Health Status ◽  
Informed Consent ◽  
Depressive Symptomatology ◽  
Self Report ◽  
High Grade ◽  
Perceived Health Status ◽  
Online Questionnaire ◽  
Independent Variables ◽  
Increased Risk ◽  
The University

The aim of the study was to evaluate depressive symptomatology within the student population of the University of Palermo (Italy). An anonymous online questionnaire was provided to the students of the University of Palermo. The first section investigated demographic and social data, while in the second section the QIDSSR16 (Quick Inventory of Depressive Symptomatology Self-Report) test was administered. 539 students (68.3% female) gave informed consent and completed the questionnaire. Considering as a dependent variable: Depressive symptomatology moderate- severe-very severe, the statistically significant independent variables associated are I don’t live with my family (aOR 1.63, 95% CI 1.01-2.63, P=0.043), I currently smoke (aOR 1.55, 95% CI 1.01-2.39, P=0.048) and Low perceived health status (aOR 4.14, 95% CI 2.73-6.28, P<0.001). Smoking is associated with an increased risk of developing a high-grade depressive symptomatology. Family plays a crucial role in decreasing the risk of moderate, severe or very severe symptoms.

scholarly journals Onset of depressive symptomatology in a sample of university students

2018 ◽  
Vol 10 (1) ◽  
pp. 8-11
Author(s):  
Omar Enzo Santangelo ◽  
Sandro Provenzano ◽  
Dario Piazza ◽  
Alberto Firenze
Keyword(s):  
Health Status ◽  
Informed Consent ◽  
Depressive Symptomatology ◽  
Self Report ◽  
High Grade ◽  
Perceived Health Status ◽  
Online Questionnaire ◽  
Independent Variables ◽  
Increased Risk ◽  
The University

The aim of the study was to evaluate depressive symptomatology within the student population of the University of Palermo (Italy). An anonymous online questionnaire was provided to the students of the University of Palermo. The first section investigated demographic and social data, while in the second section the QIDSSR16 (Quick Inventory of Depressive Symptomatology Self-Report) test was administered. 539 students (68.3% female) gave informed consent and completed the questionnaire. Considering as a dependent variable: Depressive symptomatology moderate-severe-very severe, the statistically significant independent variables associated are I don't live with my family (aOR 1.63, 95% CI 1.01-2.63, P=0.043), I currently smoke (aOR 1.55, 95% CI 1.01-2.39, P=0.048) and Low perceived health status (aOR 4.14, 95% CI 2.73-6.28, P<0.001). Smoking is associated with an increased risk of developing a high-grade depressive symptomatology. Family plays a crucial role in decreasing the risk of moderate, severe or very severe symptoms.

Readability of Pediatric Biomedical Research Informed Consent Forms

PEDIATRICS ◽  
1990 ◽  
Vol 85 (1) ◽  
pp. 58-62 ◽  
Author(s):  
Kenneth J. Tarnowski ◽  
Denise M. Allen ◽  
Christine Mayhall ◽  
Patricia A. Kelly
Keyword(s):  
Informed Consent ◽  
Biomedical Research ◽  
Human Subjects ◽  
Linear Increase ◽  
Willingness To Participate ◽  
Consent Forms ◽  
Flesch Reading Ease ◽  
Informed Consent Form ◽  
Consent Document ◽  
Protection Of Human Subjects

Informed consent forms are used in biomedical research as a mechanism to convey study information to potential subjects so that they may arrive at a decision concerning their willingness to participate. Although the Department of Health and Human Services Regulations for the Protection of Human Subjects require the presentation of specific study information at a level that is easily understood, according to research concerning adult biomedical consent forms, the typical form is not readily comprehensible. Unfortunately, no data exist concerning the readability of informed consent forms that are used in the context of pediatric biomedical research. In the present study, readability analyses were conducted on a large sample (N = 238) of pediatric biomedical informed consent forms obtained during a 10-year period from a large midwestern children's hospital. For the entire sample, results derived from two readability estimates (Fry grade equivalent and Flesch Reading Ease methods) indicated that the consent forms were written at the college graduate level. Although there was a linear increase in the length of the consent document during the 10-year period evaluated, expanded length was not associated with improved readability. According to analyses, a differential pattern of reading difficulty was associated with specific sections of the informed consent document. Findings are highly consistent with those from studies of adult biomedical consent forms and document that the purpose of the informed consent form is being compromised, in part, by a readability factor. Suggestions for solving this critical problem are advanced.

scholarly journals Uczestniczki i uczestnicy procesu kształcenia wobec wyzwań kształcenia zdalnego

2021 ◽  
Vol 20 (2) ◽  
pp. 141-155
Author(s):  
Maria Porzucek-Miśkiewicz
Keyword(s):  
Distance Learning ◽  
Basic Research ◽  
Well Being ◽  
Online Questionnaire ◽  
Research Results ◽  
The University ◽  
Educational Studies ◽  
Adam Mickiewicz

The article presents the results of study on the challenges faced by distance learning. It was carried out by means of a proprietary online questionnaire among students of pedagogy of the Faculty of Educational Studies at the University of Adam Mickiewicz in Poznań. Conclusions drawn on the basic research results may be helpful in understanding the well-being of students during distance learning.

scholarly journals Liquid materials for biomedical research: a highly IT-integrated and automated biobanking solution

2019 ◽  
Vol 43 (6) ◽  
pp. 347-354 ◽  
Author(s):  
Daniela Popp ◽  
Romanus Diekmann ◽  
Lutz Binder ◽  
Abdul R. Asif ◽  
Sara Y. Nussbeck
Keyword(s):  
Life Cycle ◽  
Medical Center ◽  
Research Results ◽  
Long Term Storage ◽  
Medical Centers ◽  
It Systems ◽  
Complete Life Cycle ◽  
The University ◽  
Term Storage

Abstract Various information technology (IT) infrastructures for biobanking, networks of biobanks and biomaterial management are described in the literature. As pre-analytical variables play a major role in the downstream interpretation of clinical as well as research results, their documentation is essential. A description for mainly automated documentation of the complete life-cycle of each biospecimen is lacking so far. Here, the example taken is from the University Medical Center Göttingen (UMG), where the workflow of liquid biomaterials is standardized between the central laboratory and the central biobank. The workflow of liquid biomaterials from sample withdrawal to long-term storage in a biobank was analyzed. Essential data such as time and temperature for processing and freezing can be automatically collected. The proposed solution involves only one major interface between the main IT systems of the laboratory and the biobank. It is key to talk to all the involved stakeholders to ensure a functional and accepted solution. Although IT components differ widely between clinics, the proposed way of documenting the complete life-cycle of each biospecimen can be transferred to other university medical centers. The complete documentation of the life-cycle of each biospecimen ensures a good interpretability of downstream routine as well as research results.

Use of reference management software among postgraduate students in Greece

2021 ◽  
pp. 096100062199641
Author(s):  
Ilias Nitsos ◽  
Afrodite Malliari ◽  
Rodopi Chamouroudi
Keyword(s):  
Student Discipline ◽  
Bibliographic Databases ◽  
Background Characteristics ◽  
Key Factors ◽  
Online Questionnaire ◽  
Management Software ◽  
Postgraduate Students ◽  
Significant Relationships ◽  
The University ◽  
Degree Level

The use of reference management software in the context of academic work and research is the main subject of this study. The study focuses on the extent to which postgraduate students at the Aristotle University of Thessaloniki, one of the largest Greek universities, make use of – or avoid using – reference management software tools to organize their bibliographic databases and to automate the process of creating references and citations. The study also tries to find out which are the key factors for their choices and whether certain background characteristics affect their behavior. It should be mentioned that no previous studies have been conducted in Greece regarding the use of reference management software in the academic environment. An online questionnaire was sent to the postgraduate students at the University and a result set of 545 responses was collected and analyzed. The majority (almost two-thirds) of the respondents identified themselves as non-users and one-third identified themselves as reference management software users. Among the latter, Mendeley was found to be the software used by more than two-thirds of the users and was followed by EndNote and Zotero. It is worth mentioning that Mendeley is the software officially recommended by the University’s central library to its users but most of the students (more than 60%) were not aware of this fact. In terms of background characteristics, the analysis revealed, among other things, statistically significant relationships between degree level, student discipline and preferences, reference management software features, and potential future use of reference management software.

scholarly journals POS0486 FACTORS ASSOCIATED WITH CHRONOTROPIC RESPONSE IN PEOPLE WITH RHEUMATOID ARTHRITIS

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 475.2-476
Author(s):  
A. Osailan
Keyword(s):  
Rheumatoid Arthritis ◽  
Risk Factors ◽  
Cardiorespiratory Fitness ◽  
Inflammatory Markers ◽  
Exercise Intolerance ◽  
Cvd Risk Factors ◽  
Cvd Risk ◽  
Chronotropic Response ◽  
Factors Associated ◽  
The University

Background:People with rheumatoid arthritis (RA) are at high risk for cardiovascular diseases (CVD) and CVD mortality. Reduced Chronotropic response (CR), which produces exercise intolerance, is known as a contributing factor to CVD and mortality. Studies have shown that people with RA have reduced CR. However, knowledge about the factors associated with CR in people with RA is limited.Objectives:To explore the factors associated with CR including CVD risk factors, inflammatory markers and cardiorespiratory fitness (VO2 peak).Methods:106 people with RA completed a treadmill exercise tolerance test while heart rate (HR) was monitored via 12 leads ECG. CR was defined as the percentage of [(achieved peak HR minus resting HR) divided by (age-predicted maximum HR minus resting HR)]. Serological CVD risk factors and inflammatory markers including lipids profile, markers of insulin resistance and sensitivity (HOMA, QUICKi), high sensitivity C-reactive protein (hsCRP), erythrocyte sedimentation rate (ESR), fibrinogen and white blood cells (WBC) were examined via a fasted blood sample. VO2 peak was assessed via breath-by-breath gas analysis.Results:34% had reduced CR based on the cut-off value (≤ 80%) and the average CR was 86.2 ± 21%. Body mass index (r=-0.33, p=.001), HOMA (r=-0.26, p=.009), hsCRP (r=-0.23, p=.02), ESR (r=-0.21, p=.04), fibrinogen (r=-0.2, p=.05), WBC (r=-0.21, p=.04) were inversely associated with CR, whereas, high density lipoprotein (HDL) (r=0.43, p<.001), QUICKi (r=0.31, p=.002), and VO2 peak (r=0.4, p<.001) were positively associated with CR. When all the variables were entered into a stepwise linear regression, HDL (p<.001) and VO2 peak (p=.009) were independently associated with CR.Conclusion:The current findings suggest that CR in RA was associated with many CVD risk factors, inflammatory markers, and cardiorespiratory fitness. Among all the varibales, HDL and cardiorespiratory fitness were moderately and independently associated with CR. Future studies should investigate the effect of improving these associated variables on CR in people with RA via exercise training programes.Acknowledgements:Thanks to physical activity in Rheumatoid arthritis research team and Research department in Dudley Hospital. Sincere appreciation and gratitude to Dr Jet Veldhuizen van Zanten, Prof. Joan Duda, and Prof. George Kitas from the University of Birmingham and Prof. George Metsios from the University of Wolverhampton.Disclosure of Interests:None declared

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