scholarly journals A Social Work Perspective on Paediatric and Adolescent Research Vulnerability

2016 ◽  
Vol 18 (2) ◽  
pp. 67-78
Author(s):  
Kyle A McGregor ◽  
James A Hall ◽  
David A Wilkerson ◽  
Larry W Bennett ◽  
Mary A Ott
Keyword(s):  
Social Work ◽  
Informed Consent ◽  
Clinical Research ◽  
Vulnerable Populations ◽  
Biomedical Research ◽  
Pediatric Research ◽  
Complex Interplay ◽  
Screening Techniques ◽  
Ethical Concerns ◽  
The Impact

Children’s and adolescents’ capacity to provide valid informed consent is one of the key ethical concerns in pediatric research. This review of adolescent vulnerability is presented to highlight the complex interplay between capacity and other forms of vulnerability. This review is offered as an interdisciplinary analysis to better understand why the study of vulnerable populations is critical to the ethical advancement of clinical research. Results from this analysis suggest the need for enhanced screening techniques as well as the utilization of specialized staff to identify and reduce the impact of different forms of vulnerability. These findings also provide insights into ways to ethically involve youth in complex biomedical research.

Cancer patients’ awareness about clinical research in the era of social media and “fake news”: Preliminary results from ELPIS Study.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e24121-e24121
Author(s):  
Celeste Cagnazzo ◽  
Veronica Franchina ◽  
Giuseppe Toscano ◽  
Franca Fagioli ◽  
Tindara Franchina ◽  
...  
Keyword(s):  
Informed Consent ◽  
Clinical Research ◽  
Cancer Patients ◽  
Experimental Therapy ◽  
Average Score ◽  
Trial Participation ◽  
Primary Role ◽  
Fake News ◽  
Patient Awareness ◽  
The Impact

e24121 Background: Barriers for low recruitment in clinical trials have been classified based on three main sources: physician, patient, system. A primary role is played by a low patient awareness, which often leads to a lack of confidence in science and a substantial inability to estimate the benefits deriving from trial participation, aggravated by the spread of fake news. A prospective observational study was conducted to investigate the views of cancer patients on aspects of clinical research, their expectations, the level of comprehensibility of informed consent and the impact of the fake news phenomenon. Methods: From January 2018, after Ethics Committees approval, the ELPIS study was initiated in 9 Italian Medical Oncology Units. After signing the informed consent, patients were asked to complete a questionnaire, consisting of a set of multiple choice and Likert-score questions. Results: As of January 2021, 115 patients were enrolled, with a balanced sex distribution and a prevalence of subjects older than 55-years (79.8%). Regarding the previous knowledge about clinical research, the average score was 3.9 (range 1-5). The vast majority of respondents (91.3%) had already started experimental therapy and many of them constantly used internet (65.2%) and social networks (34.8%). More than half (53.9%) stated the interview with the physician was sufficient for a full understanding of informed consent. In case of doubt, the majority seeked support in the clinician (39.1%) while very few (1.7%) relied on the web. The average score attributed to doctor-patient relationship was equal to 8.89 (range 1-10). Respondents were quite confident in their ability to independently search for information on their disease, discriminate fake news and identify reliable sites (average score 3.26, 3.27, 3.09 respectively, over a range of 1-5). The scores related to the presumed ability to understand the results of a clinical study and to actively collaborate to produce research were high (average score 4.72 and 4.39 over a range of 1-5). Conclusions: Preliminary data from our research show a good level of patient awareness and a fine ability to understand information, discerning real from fake news. Continuing and implementing the training initiatives of the population in the health sector will certainly contribute to further improvement, hopefully obtaining an even greater involvement of patients in the early phases of research.

scholarly journals The impact of COVID-19 pandemic on international students in Canada

2020 ◽  
Vol 63 (6) ◽  
pp. 820-824
Author(s):  
David Firang
Keyword(s):  
Social Work ◽  
International Students ◽  
Social Workers ◽  
Vulnerable Populations ◽  
International Federation ◽  
Social Work Research ◽  
Academic Literature ◽  
Holistic Understanding ◽  
The Impact ◽  
Vulnerable Population Groups

The rate at which the coronavirus (aka COVID-19) pandemic is exterminating thousands of people and leaving millions sick has pushed the International Federation of Social Workers to call on scholars to examine the impact of the pandemic on vulnerable populations. One of the most vulnerable population groups ignored by social work research on COVID-19 is international students. Drawing on media sources, academic literature, and the author’s interactions with international students, this essay argues that international students are more vulnerable during this pandemic. The essay contributes to our holistic understanding of how social work can mitigate the impact of the pandemic in general.

scholarly journals Impact of the COVID-19 Pandemic on Cardiovascular Science: Anticipating Problems and Potential Solutions: A Presidential Advisory From the American Heart Association

Circulation ◽  
2021 ◽  
Author(s):  
Elizabeth M. McNally ◽  
Mitchell S.V. Elkind ◽  
Ivor J. Benjamin ◽  
Mina K. Chung ◽  
Glenn H. Dillon ◽  
...  
Keyword(s):  
Clinical Research ◽  
Biomedical Research ◽  
Research Participation ◽  
Heart Association ◽  
Well Being ◽  
Biomedical Science ◽  
Experimental Science ◽  
Research Activity ◽  
Key Steps ◽  
The Impact

The coronavirus disease 2019 (COVID-19) pandemic has had worldwide repercussions for health care and research. In spring 2020, most non–COVID-19 research was halted, hindering research across the spectrum from laboratory-based experimental science to clinical research. Through the second half of 2020 and the first half of 2021, biomedical research, including cardiovascular science, only gradually restarted, with many restrictions on onsite activities, limited clinical research participation, and the challenges associated with working from home and caregiver responsibilities. Compounding these impediments, much of the global biomedical research infrastructure was redirected toward vaccine testing and deployment. This redirection of supply chains, personnel, and equipment has additionally hampered restoration of normal research activity. Transition to virtual interactions offset some of these limitations but did not adequately replace the need for scientific exchange and collaboration. Here, we outline key steps to reinvigorate biomedical research, including a call for increased support from the National Institutes of Health. We also call on academic institutions, publishers, reviewers, and supervisors to consider the impact of COVID-19 when assessing productivity, recognizing that the pandemic did not affect all equally. We identify trainees and junior investigators, especially those with caregiving roles, as most at risk of being lost from the biomedical workforce and identify steps to reduce the loss of these key investigators. Although the global pandemic highlighted the power of biomedical science to define, treat, and protect against threats to human health, significant investment in the biomedical workforce is required to maintain and promote well-being.

scholarly journals The Attitudes of Relatives of ICU Patients toward Informed Consent for Clinical Research

2020 ◽  
Vol 2020 ◽  
pp. 1-6
Author(s):  
Rania Mahafzah ◽  
Karem H. Alzoubi ◽  
Omar F. Khabour
Keyword(s):  
Informed Consent ◽  
Clinical Research ◽  
Critically Ill ◽  
Biomedical Research ◽  
Research Participation ◽  
Next Of Kin ◽  
Icu Patients ◽  
Direct Benefit ◽  
Positive Attitudes ◽  
Unconscious Patients

Background. Informed consent is a key ethical requirement for biomedical research that is implemented to ensure autonomy and voluntary participation. However, patients in the intensive care unit (ICU) may be unconscious or severely ill and thus lack the capacity for decisions about research participation. Thus, relatives or guardians are usually asked to provide informed consent prior to the inclusion of ICU patients in research. Aims. This study aimed to assess the attitudes and preferences of relatives of ICU patients toward informed consent in biomedical research in Jordan. Subjects and Methods. A sample of 184 relatives with a critically ill next of kin in the ICU was anonymously surveyed regarding their attitudes and preferences toward giving informed consent for biomedical research on behalf of their patients. Results. The study showed that the majority of relatives had a positive attitude toward the informed consent process on behalf of their patients in the ICU (72.3%). The perception that participation in research would be directly beneficial to their patient was the most significant reason to provide informed consent among relatives. The degree of relatedness to the patient was significantly associated with the decision to provide informed consent on behalf of the patients in the ICU. Additionally, more than 70% of the relatives strongly agreed to take part in clinical research if they were to be unconscious patients in the ICU. Moreover, the majority of the respondents agreed that their first-degree relatives would give consent on their behalf. Conclusion. Relatives with a critically ill next of kin in the ICU had positive attitudes toward providing informed consent on behalf of their patients. This was motivated by the direct benefit from the research to their patient.

scholarly journals Normative framework of informed consent in clinical research in Germany, Poland, and Russia

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Marcin Orzechowski ◽  
Katarzyna Woniak ◽  
Cristian Timmermann ◽  
Florian Steger
Keyword(s):  
Informed Consent ◽  
Clinical Research ◽  
Biomedical Research ◽  
Human Subjects ◽  
Ethical Conduct ◽  
Vulnerable Groups ◽  
Research Subjects ◽  
Normative Framework ◽  
Declaration Of Helsinki ◽  
Normative Requirements

Abstract Background Biomedical research nowadays is increasingly carried out in multinational and multicenter settings. Due to disparate national regulations on various ethical aspects, such as informed consent, there is the risk of ethical compromises when involving human subjects in research. Although the Declaration of Helsinki is the point of reference for ethical conduct of research on humans, national normative requirements may diverge from its provisions. The aim of this research is to examine requirements on informed consent in biomedical research in Germany, Poland, and Russia to determine how each national regulatory framework relates to the provisions of the Declaration of Helsinki. Methods For this analysis, we conducted a search of the legal databases “Gesetze im Internet” for Germany, “Internetowy System Aktow Prawnych” for Poland, and “ГAPAHT – Garant” for Russia. The search was complemented by a review of secondary literature contained in the databases Google Scholar, PubMed, Polish National Library, and eLibrary.ru. We have identified 21 normative regulations containing provisions on informed consent in clinical research in all three countries. The content of these documents was systematically categorized and analyzed. Results The normative framework in all three countries shows a strong commitment towards the core ethical principles of research envisaged in the Declaration of Helsinki. Nevertheless, provisions on informed consent vary between these three countries. The differences range from the method and language in which information should be provided, through the amount of information required to be disclosed, to the form of documenting consent or withdrawal. In the case of research on vulnerable groups, these differences are particularly visible. Conclusions The identified differences can negatively impact the ethical conduct of international clinical studies. Attention needs to be paid that flexibilities within national regulations are not misused to undermine the protection of research subjects. Achieving global or regional legislative harmonization might prove impossible. Such lack of legal consensus reinforces the significance of the international ethical agreements. Trial registration: Not applicable.

The impact of disease severity on the informed consent process in clinical research

1996 ◽  
Vol 100 (3) ◽  
pp. 261-268 ◽  
Author(s):  
Monica H. Schaeffer ◽  
David S. Krantz ◽  
Alison Wichman ◽  
Henry Masur ◽  
Eddie Reed ◽  
...  
Keyword(s):  
Informed Consent ◽  
Clinical Research ◽  
Disease Severity ◽  
Informed Consent Process ◽  
Consent Process ◽  
The Impact

scholarly journals Social Media, Research, and Ethics: Does Participant Willingness Matter?

2020 ◽  
Vol 29 (01) ◽  
pp. 176-183
Author(s):  
Annie Y. S. Lau ◽  
Pascal Staccini ◽  
Keyword(s):  
Social Media ◽  
Clinical Research ◽  
Social Networking Sites ◽  
Health Informatics ◽  
Ethical Issues ◽  
Online Data ◽  
Ethical Concerns ◽  
Participant Engagement ◽  
Social Media Platforms ◽  
The Impact

Objective: To summarise the state of the art published in 2019 in consumer health informatics and education, with a special emphasis on “Ethics and Health Informatics”. Methods: We conducted a systematic search of articles published in PubMed using a predefined set of queries, which identified 368 potential articles for review. These articles were screened according to topic relevance and 15 were selected for consideration of best paper candidates, which were then presented to a panel of international experts for full paper review and scoring. The top five papers according to the external reviewers’ ranking were discussed in a consensus meeting. Finally, the paper that received the highest score from four of the five experts was selected as the best paper on social media and ethics for patients and consumers of the year 2019. Results: Despite using the terms “ethics” and “ethical” in the search query, we retrieved very few articles. The bibliometric analysis identified three major clusters centred on “social”, “health”, and “study”. Among the top five papers, one was a review where the authors identified ethical issues across four areas at the intersection of social media and health: 1) the impact of social networking sites on the doctor-patient relationship; 2) the development of e-health platforms to deliver care; 3) the use of online data and algorithms to inform health research; and 4) the broader public health consequences of widespread social media use. The other papers highlighted ethical concerns in using social media to interact with patients at different phases of a clinical research protocol, such as recruitment phase, participant engagement, data linkage, and detection and monitoring of adverse events. Conclusions: Findings suggest that most users do not think that using social media for patient monitoring in clinical research, for example using Twitter for clinical trial recruitment, constitutes inappropriate surveillance or a violation of privacy. However, further research is needed to identify whether and how views on ethical concerns differed between social media platforms and across populations.

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