scholarly journals Investigating the process of ethical approval in citizen science research: the case of Public Health

2021 ◽  
Vol 20 (06) ◽  
pp. A04
Author(s):  
Antonella Ficorilli ◽  
Giovanni Maccani ◽  
Mara Balestrini ◽  
Annibale Biggeri ◽  
Bruna De Marchi ◽  
...  

Undertaking citizen science research in Public Health involving human subjects poses significant challenges concerning the traditional process of ethical approval. It requires an extension of the ethics of protection of research subjects in order to include the empowerment of citizens as citizen scientists. This paper investigates these challenges and illustrates the ethical framework and the strategies developed within the CitieS-Health project. It also proposes first recommendations generated from the experiences of five citizen science pilot studies in environmental epidemiology within this project.

2012 ◽  
Vol 1 (1) ◽  
pp. 8
Author(s):  
Elena V. Syurina ◽  
Tobias Schulte in den Bäumen ◽  
Frans J.M. Feron ◽  
Angela Brand

<em>Background</em>. In the last decades we have seen a constant growth in the fields of science related to the use of genome-based health information. However, there is a gap between basic science research and the Public Health everyday practice. For a successful introduction of genome-based technologies policy actions on the international level are needed. This work represents the initial stage of the PHGEN II (Public Health Genomics European Network II) project. In order to prepare a base for bridging genomics and Public Health, an inventory study of the existing legislative base dealing with controversies of genome-based knowledge was conducted. The work results in the mapping of the most and the least legislatively covered areas and some preliminary conclusions about the existing gaps. <em>Design and Methods</em>. The collection of the evidence-based policies was done through the PHGEN II project. The mapping covered the meta-level (international, European general guidelines). The expert opinion of the partners of the project was required to reflect on and grade the collected evidence. Results. An analysis of the evidence was made by the area of coverage: using the list of important policy areas for successful introduction of genome-based technologies into Public Health and the Public Health Genomics Wheel (originally Public Health Wheel developed by Institute of Medicine). <em>Conclusions</em>. Severe inequalities in coverage of important issues of Public Health Genomics were found. The most attention was paid to clinical utility and clinical validity of the screening and the protection of human subjects. Important areas such as trade agreements, Public Health Genomics literacy, insurance issues, behaviour modification in response to genomics results etc. were paid less attention to. For the successful adoption of new technologies on the Public Health level the focus should be not only on the translation to clinical practice, but the translation from bench to Public Health policy and back. Coherent and consistent coverage of all aspects of the translation of genome based information and technologies is of outmost importance.


2003 ◽  
Vol 31 (4) ◽  
pp. 654-662 ◽  
Author(s):  
Scott Burris ◽  
Lance Gable ◽  
Lesley Stone ◽  
Zita Lazzarini

“Public health practice” consists of activities and Programs managed by public health agencies to promote health and prevent disease, injury, and disability. Some of these activities might be deemed to fit within the broad definition of “research” under federal regulations, known as the Common Rule, designed to protect human research subjects. The Common Rule defines research as “a systeniatic investigation, including research development, testing and evaluation, designed to develop or contribute to generalizable knowledge.” Public health activities that might under some circumstances be considered research include disease reporting, review of medical records, surveys, interviews, focus groups, specimen collection (blood, urine, etc.), and laboratory testing (both identifiable and anonymous).There are questions about the extent to which the Common Rule applies or was intended to apply to public health practice: and it has been suggested in any case that Common Rule regulation of public health practice may not be socially optimal for both practical and principled reasons.


2016 ◽  
Vol 13 (1) ◽  
pp. 23-41 ◽  
Author(s):  
Ben Gray ◽  
Jo Hilder ◽  
Lindsay Macdonald ◽  
Rachel Tester ◽  
Anthony Dowell ◽  
...  

Research ethics guidelines grew out of several infamous episodes where research subjects were exploited. There is significant international synchronization of guidelines. However, indigenous groups in New Zealand, Canada and Australia have criticized these guidelines as being inadequate for research involving indigenous people and have developed guidelines from their own cultural perspectives. Whilst traditional research ethics guidelines place a lot of emphasis on informed consent, these indigenous guidelines put much greater emphasis on interdependence and trust. This article argues that traditional guidelines are premised on relationships of equal power, and that often the researcher has more power that is not fully equalized by providing information. Where there is a relationship of unequal power, then focusing on interdependence and trust is more likely to achieve ethical safety. We illustrate this thesis by describing the detail of a research project looking at the use of interpreters, where we video-recorded live consultations and then interviewed the patient, interpreter and doctor. We conclude by suggesting that mainstream research ethics guidelines should pay more attention to the development of a trustworthy relationship between subject and researcher, and that, following the lead from clinical medicine, we should develop a culturally competent ethical framework for research on human subjects.


2003 ◽  
Vol 99 (5) ◽  
pp. 1209-1213 ◽  
Author(s):  
Paul S. Myles ◽  
Nicole Tan

Background Ethical conduct in human research in anesthesia includes approval by an institutional review board (IRB) or ethics committee and informed consent. Evidence of these is sometimes lacking in journal publications. Methods The authors reviewed all publications involving human subjects in six leading anesthesia journals for the year 2001 (n = 1189). Rates of IRB approval and informed consent were examined and compared with potential predictors that included journal, type of publication, and patient demographics (age, sex, elective or emergency status). Rates were compared by use of chi-square and logistic regression. Results The authors found that IRB approval was documented in 71% of publications and consent was obtained in 66% of publications. Significant variation in IRB approval and consent was found among journals (P &lt; 0.0005) and according to type of publication (P &lt; 0.0005). Because publication type affected rates of IRB approval and consent (trials &gt; mechanistic studies &gt; observational studies &gt; case reports), an analysis restricted to prospective studies also found a significant difference in IRB approval and consent among journals (P &lt; 0.0005). Conclusions This study suggests that rates of IRB approval and informed consent vary among publications in anesthesia journals. Clearer guidelines (and author adherence) for all types of publication are needed, both as a protection for research subjects and to maintain public trust in the process.


2014 ◽  
Vol 84 (Supplement 1) ◽  
pp. 52-59 ◽  
Author(s):  
Sherry A. Tanumihardjo ◽  
Anura V. Kurpad ◽  
Janet R. Hunt

The current use of serum retinol concentrations as a measurement of subclinical vitamin A deficiency is unsatisfactory for many reasons. The best technique available for vitamin A status assessment in humans is the measurement of total body pool size. Pool size is measured by the administration of retinol labelled with stable isotopes of carbon or hydrogen that are safe for human subjects, with subsequent measurement of the dilution of the labelled retinol within the body pool. However, the isotope techniques are time-consuming, technically challenging, and relatively expensive. There is also a need to assess different types of tracers and doses, and to establish clear guidelines for the use and interpretation of this method in different populations. Field-friendly improvements are desirable to encourage the application of this technique in developing countries where the need is greatest for monitoring the risk of vitamin A deficiency, the effectiveness of public health interventions, and the potential of hypervitaminosis due to combined supplement and fortification programs. These techniques should be applied to validate other less technical methods of assessing vitamin A deficiency. Another area of public health relevance for this technique is to understand the bioconversion of β-carotene to vitamin A, and its relation to existing vitamin A status, for future dietary diversification programs.


HortScience ◽  
1998 ◽  
Vol 33 (3) ◽  
pp. 554c-554
Author(s):  
Sonja M. Skelly ◽  
Jennifer Campbell Bradley

Survey research has a long precedence of use in the social sciences. With a growing interest in the area of social science research in horticulture, survey methodology needs to be explored. In order to conduct proper and accurate survey research, a valid and reliable instrument must be used. In many cases, however, an existing measurement tool that is designed for specific research variables is unavailable thus, an understanding of how to design and evaluate a survey instrument is necessary. Currently, there are no guidelines in horticulture research for developing survey instruments for use with human subjects. This presents a problem when attempting to compare and reference similar research. This workshop will explore the methodology involved in preparing a survey instrument; topics covered will include defining objectives for the survey, constructing questions, pilot testing the survey, and obtaining reliability and validity information. In addition to these topics some examples will be provided which will illustrate how to complete these steps. At the conclusion of this session a discussion will be initiated for others to share information and experiences dealing with creating survey instruments.


2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Kjell Asplund ◽  
Kerstin Hulter Åsberg

Abstract Background Previous studies have indicated that failure to report ethical approval is common in health science articles. In social sciences, the occurrence is unknown. The Swedish Ethics Review Act requests that sensitive personal data, in accordance with the EU General Data Protection Regulation (GDPR), should undergo independent ethical review, irrespective of academic discipline. We have explored the adherence to this regulation. Methods Using the Web of Science databases, we reviewed 600 consecutive articles from three domains (health sciences with and without somatic focus and social sciences) based on identifiable personal data published in 2020. Results Information on ethical review was lacking in 12 of 200 health science articles with somatic focus (6%), 21 of 200 health science articles with non-somatic focus (11%), and in 54 of 200 social science articles (27%; p < 0.001 vs. both groups of health science articles). Failure to report on ethical approval was more common in (a) observational than in interventional studies (p < 0.01), (b) articles with only 1–2 authors (p < 0.001) and (c) health science articles from universities without a medical school (p < 0.001). There was no significant association between journal impact factor and failure to report ethical approval. Conclusions We conclude that reporting of research ethics approval is reasonably good, but not strict, in health science articles. Failure to report ethical approval is about three times more frequent in social sciences compared to health sciences. Improved adherence seems needed particularly in observational studies, in articles with few authors and in social science research.


Author(s):  
Elizabeth Lerner Papautsky ◽  
Richard J. Holden ◽  
Rupa S. Valdez ◽  
Jordan Hill ◽  
Janetta Brown

In the 4th panel on the topic of The Patient in Patient Safety, we highlighted topics of current relevance and facilitated a reflection session. The objective was to highlight the ways in which the COVID-19 pandemic has impacted patient ergonomics research and work, with particular focus on safety. After a topic overview, panelists presented their work on overcoming challenges to human subjects research created by the suspension of face-to-face activities during the COVID-19 pandemic. A facilitated reflection and brainstorming session using Miro followed. We used questions to elicit examples of patient and caregiver roles in safety during the pandemic and research strategies and challenges. These questions were also distributed on social media prior to the event. The panel served as an opportunity to share lessons learned.


Sign in / Sign up

Export Citation Format

Share Document