Pub Date : 2021-02-27DOI: 10.1177/1747016121997522
Corinne Reid, C. Calia, Cristóbal Guerra, L. Grant, Matilda Anderson, Khama Chibwana, Paul Kawale, Action Amos
Global challenge-led research seeks to contribute to solution-generation for complex problems. Multicultural, multidisciplinary, and multisectoral teams must be capable of operating in highly demanding contexts. This brings with it a swathe of ethical conflicts that require quick and effective solutions that respect both international conventions and cultural diversity. The objective of this article is to describe the process of creating a toolkit designed to support global researchers in navigating these ethical challenges. The process of creating the toolkit embodied the model of ethical research practice that it advocates. Specifically, at the heart of ethical decision-making is consideration of the following: Place, solutions must be relevant to the context in which they are to be used; People, those impacted by the outcomes must be partners in co-creation; Principles, ethical projects must be guided by clear values; and Precedent, the existing evidence-base should guide the project and, in turn, the project should extend the evidence-base. It is the thesis underlying the toolkit that consideration of these 4Ps provides a strong basis for understanding ethical conflicts and allows for the generation of potential solutions. This toolkit has been designed in two phases of collaborative work. More than 200 researchers participated from more than 30 countries and more than 60 different disciplines. This allowed us to develop a model for contextual, dynamic analysis of ethical conflicts in global research that is complementary to traditional codes of ethics. It emphasizes the need to consider ethical analysis as an iterative, reflective, process relevant at all stages of the research journey, including, ultimately, in evaluating the legacy of a project. The toolkit is presented as an open access website to promote universal access. A downloadable “pocket guide” version is also now available in 11 languages.
{"title":"Ethics in global research: Creating a toolkit to support integrity and ethical action throughout the research journey","authors":"Corinne Reid, C. Calia, Cristóbal Guerra, L. Grant, Matilda Anderson, Khama Chibwana, Paul Kawale, Action Amos","doi":"10.1177/1747016121997522","DOIUrl":"https://doi.org/10.1177/1747016121997522","url":null,"abstract":"Global challenge-led research seeks to contribute to solution-generation for complex problems. Multicultural, multidisciplinary, and multisectoral teams must be capable of operating in highly demanding contexts. This brings with it a swathe of ethical conflicts that require quick and effective solutions that respect both international conventions and cultural diversity. The objective of this article is to describe the process of creating a toolkit designed to support global researchers in navigating these ethical challenges. The process of creating the toolkit embodied the model of ethical research practice that it advocates. Specifically, at the heart of ethical decision-making is consideration of the following: Place, solutions must be relevant to the context in which they are to be used; People, those impacted by the outcomes must be partners in co-creation; Principles, ethical projects must be guided by clear values; and Precedent, the existing evidence-base should guide the project and, in turn, the project should extend the evidence-base. It is the thesis underlying the toolkit that consideration of these 4Ps provides a strong basis for understanding ethical conflicts and allows for the generation of potential solutions. This toolkit has been designed in two phases of collaborative work. More than 200 researchers participated from more than 30 countries and more than 60 different disciplines. This allowed us to develop a model for contextual, dynamic analysis of ethical conflicts in global research that is complementary to traditional codes of ethics. It emphasizes the need to consider ethical analysis as an iterative, reflective, process relevant at all stages of the research journey, including, ultimately, in evaluating the legacy of a project. The toolkit is presented as an open access website to promote universal access. A downloadable “pocket guide” version is also now available in 11 languages.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"17 1","pages":"359 - 374"},"PeriodicalIF":1.7,"publicationDate":"2021-02-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"87509127","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-02-11DOI: 10.1177/1747016121994011
Simon Nuttgens
Ethical decision-making is inherent to the research ethics committee (REC) deliberation process. While ethical codes, regulations, and research standards are indispensable in guiding this process, decision-making is nonetheless susceptible to nonrational factors that can undermined the quality, consistency, and perceived fairness REC decisions. In this paper I identify biases and heuristics (i.e., nonrational factors) that are known to influence the reasoning processes among the general population and various professions alike. I suggest that such factors will inevitably arise within the REC review process. To help mitigate this potential, I propose an interventive questioning process that can be used by RECs to identify and minimize the influence of the nonrational factors most likely to impact REC judgment and decision-making.
{"title":"Identifying and addressing nonrational processes in REB ethical decision-making","authors":"Simon Nuttgens","doi":"10.1177/1747016121994011","DOIUrl":"https://doi.org/10.1177/1747016121994011","url":null,"abstract":"Ethical decision-making is inherent to the research ethics committee (REC) deliberation process. While ethical codes, regulations, and research standards are indispensable in guiding this process, decision-making is nonetheless susceptible to nonrational factors that can undermined the quality, consistency, and perceived fairness REC decisions. In this paper I identify biases and heuristics (i.e., nonrational factors) that are known to influence the reasoning processes among the general population and various professions alike. I suggest that such factors will inevitably arise within the REC review process. To help mitigate this potential, I propose an interventive questioning process that can be used by RECs to identify and minimize the influence of the nonrational factors most likely to impact REC judgment and decision-making.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"37 1","pages":"328 - 345"},"PeriodicalIF":1.7,"publicationDate":"2021-02-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"85958575","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-01-19DOI: 10.1177/1747016120988767
Wyke J P Stommel, Lynn de Rijk
Although ethical guidelines for doing Internet research are available, most prominently those of the Association of Internet Researchers (www.aoir.org), ethical decision-making for research on publicly available, naturally-occurring data remains a major challenge. As researchers might also turn to others to inform their decisions, this article reviews recent research papers on publicly available, online data. Research involving forums such as Facebook pages, Twitter, YouTube, news comments, blogs, etc. is examined to see how authors report ethical considerations and how they quote these data. We included 132 articles published in discourse analysis-oriented journals between January 2017 and February 2020. Roughly one third of the articles (85 out of 132) did not discuss ethical issues, mostly claiming the data were publicly available. Quotations nevertheless tended to be anonymized, although retrievability of posts was generally not taken into account. In those articles in which ethical concerns were reported, related decisions appeared to vary substantially. In most cases it was argued that informed consent was not required. Similarly, approval from research ethics committees was mostly regarded unnecessary. Other ethical issues like consideration of users’ expectations and intentions, freedom of choice, possible harm, sensitive topics, and vulnerable groups were rarely discussed in the articles. We argue for increased attention to ethical issues and legal aspects in discourse analytic articles involving online data beyond mentioning general concerns. Instead, we argue for more involvement of users/participants in ethical decision-making, for consideration of retrievability of posts and for a role for journal editors.
{"title":"Ethical approval: none sought. How discourse analysts report ethical issues around publicly available online data","authors":"Wyke J P Stommel, Lynn de Rijk","doi":"10.1177/1747016120988767","DOIUrl":"https://doi.org/10.1177/1747016120988767","url":null,"abstract":"Although ethical guidelines for doing Internet research are available, most prominently those of the Association of Internet Researchers (www.aoir.org), ethical decision-making for research on publicly available, naturally-occurring data remains a major challenge. As researchers might also turn to others to inform their decisions, this article reviews recent research papers on publicly available, online data. Research involving forums such as Facebook pages, Twitter, YouTube, news comments, blogs, etc. is examined to see how authors report ethical considerations and how they quote these data. We included 132 articles published in discourse analysis-oriented journals between January 2017 and February 2020. Roughly one third of the articles (85 out of 132) did not discuss ethical issues, mostly claiming the data were publicly available. Quotations nevertheless tended to be anonymized, although retrievability of posts was generally not taken into account. In those articles in which ethical concerns were reported, related decisions appeared to vary substantially. In most cases it was argued that informed consent was not required. Similarly, approval from research ethics committees was mostly regarded unnecessary. Other ethical issues like consideration of users’ expectations and intentions, freedom of choice, possible harm, sensitive topics, and vulnerable groups were rarely discussed in the articles. We argue for increased attention to ethical issues and legal aspects in discourse analytic articles involving online data beyond mentioning general concerns. Instead, we argue for more involvement of users/participants in ethical decision-making, for consideration of retrievability of posts and for a role for journal editors.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"30 1","pages":"275 - 297"},"PeriodicalIF":1.7,"publicationDate":"2021-01-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"76668221","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2020-12-17DOI: 10.1177/1747016120982023
J. Fletcher
This paper considers the potential for the Mental Capacity Act (MCA) of England and Wales to incentivise the exclusion of people with dementia from research. The MCA is intended to standardise and safeguard the inclusion of people with cognitive impairments in research. This entails various procedural requirements, which in pressurised research contexts can lead researchers to exclude people with dementia as a means of simplifying bureaucratic constraints. I consider the risks of an ‘unethical ethics’, wherein procedural ethics indirectly causes the exclusion of people with dementia from research, undermining historic successes toward increased inclusivity. I suggest several solutions, including enhanced sensitivity to impairments and shifting the burden of proof from justifying inclusion to justifying exclusion. The paper responds to the ‘ethics creep’ tradition in procedural ethics, and critical appraisals of capacity legislation in dementia research. This approach recognises that institutional research ethics is itself a major ethical concern and can unwittingly beget unethical practices. Dementia researchers must be alert to such unethical ethics.
{"title":"Unethical governance: capacity legislation and the exclusion of people diagnosed with dementias from research","authors":"J. Fletcher","doi":"10.1177/1747016120982023","DOIUrl":"https://doi.org/10.1177/1747016120982023","url":null,"abstract":"This paper considers the potential for the Mental Capacity Act (MCA) of England and Wales to incentivise the exclusion of people with dementia from research. The MCA is intended to standardise and safeguard the inclusion of people with cognitive impairments in research. This entails various procedural requirements, which in pressurised research contexts can lead researchers to exclude people with dementia as a means of simplifying bureaucratic constraints. I consider the risks of an ‘unethical ethics’, wherein procedural ethics indirectly causes the exclusion of people with dementia from research, undermining historic successes toward increased inclusivity. I suggest several solutions, including enhanced sensitivity to impairments and shifting the burden of proof from justifying inclusion to justifying exclusion. The paper responds to the ‘ethics creep’ tradition in procedural ethics, and critical appraisals of capacity legislation in dementia research. This approach recognises that institutional research ethics is itself a major ethical concern and can unwittingly beget unethical practices. Dementia researchers must be alert to such unethical ethics.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"35 1","pages":"298 - 308"},"PeriodicalIF":1.7,"publicationDate":"2020-12-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"85153470","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2020-12-10DOI: 10.1177/1747016120980560
Karen L. Celedonia, Michael W. Valenti, Marcelo Corrales Compagnucci, M. Lowery Wilson
Community-based mental health care providers (CBMHCPs) are increasingly contacted by external researchers for research study recruitment. Unfortunately, many do not possess the resources or personnel with the skills required to successfully evaluate research proposals for risks. Providing access to clients and client health information can result in harmful personal and legal consequences if the proper safeguards do not exist. This article discusses the legal requirements and practical implications for CBMHCPs when acting as gatekeepers. A case study from a large CBMHCP is presented as an illustration of steps that can be taken to protect clients and avoid risk. Additional recommendations for establishing protective safeguards and research evaluation protocols are discussed.
{"title":"Community-based health care providers as research participant recruitment gatekeepers: ethical and legal issues in a real-world case example","authors":"Karen L. Celedonia, Michael W. Valenti, Marcelo Corrales Compagnucci, M. Lowery Wilson","doi":"10.1177/1747016120980560","DOIUrl":"https://doi.org/10.1177/1747016120980560","url":null,"abstract":"Community-based mental health care providers (CBMHCPs) are increasingly contacted by external researchers for research study recruitment. Unfortunately, many do not possess the resources or personnel with the skills required to successfully evaluate research proposals for risks. Providing access to clients and client health information can result in harmful personal and legal consequences if the proper safeguards do not exist. This article discusses the legal requirements and practical implications for CBMHCPs when acting as gatekeepers. A case study from a large CBMHCP is presented as an illustration of steps that can be taken to protect clients and avoid risk. Additional recommendations for establishing protective safeguards and research evaluation protocols are discussed.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"114 1","pages":"242 - 250"},"PeriodicalIF":1.7,"publicationDate":"2020-12-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"77744989","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2020-11-16DOI: 10.1177/17470161211030971
Sylivia Nalubega, Karen Cox, H. Mugerwa, C. Evans
There is a gap in evidence regarding how research trial closure processes are managed to ensure continuity of HIV care for HIV positive participants following trial closure within low income settings. This research aimed to establish how research staff in Uganda understood and practised post-trial care for HIV positive trial participants. A grounded theory study was conducted using in-depth individual interviews and focus group discussions with 22 research staff from three different trials in Uganda. The results indicated that researchers engaged in three main activities to support trial participants, including: (i) preparing for post-trial care, which included instituting trial closure guidelines, planning necessary resources, and informing trial participants about post-trial care; (ii) facilitating participants during trial exit by engaging in psychological and practical support activities and (iii) providing follow up care and support for participants after trial exit, to respond to the needs of trial participants which often arose after trial exit. This study established a need for a holistic approach to post-trial-care of HIV positive trial participants in Uganda, and the need to engage multiple stakeholders including ethics authorities.
{"title":"Ethical and practical considerations in HIV drug trial closure: perspectives of research staff in Uganda","authors":"Sylivia Nalubega, Karen Cox, H. Mugerwa, C. Evans","doi":"10.1177/17470161211030971","DOIUrl":"https://doi.org/10.1177/17470161211030971","url":null,"abstract":"There is a gap in evidence regarding how research trial closure processes are managed to ensure continuity of HIV care for HIV positive participants following trial closure within low income settings. This research aimed to establish how research staff in Uganda understood and practised post-trial care for HIV positive trial participants. A grounded theory study was conducted using in-depth individual interviews and focus group discussions with 22 research staff from three different trials in Uganda. The results indicated that researchers engaged in three main activities to support trial participants, including: (i) preparing for post-trial care, which included instituting trial closure guidelines, planning necessary resources, and informing trial participants about post-trial care; (ii) facilitating participants during trial exit by engaging in psychological and practical support activities and (iii) providing follow up care and support for participants after trial exit, to respond to the needs of trial participants which often arose after trial exit. This study established a need for a holistic approach to post-trial-care of HIV positive trial participants in Uganda, and the need to engage multiple stakeholders including ethics authorities.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"74 7 1","pages":"423 - 434"},"PeriodicalIF":1.7,"publicationDate":"2020-11-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"84131596","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2020-11-04DOI: 10.1177/1747016120980562
M. Paruzel-Czachura, Lidia Baran, Zbigniew Spendel
The paper reports two studies exploring the relationship between scholars’ self-reported publication pressure and their self-reported scientific misconduct in research. In Study 1 the participants (N = 423) were scholars representing various disciplines from one big university in Poland. In Study 2 the participants (N = 31) were exclusively members of the management, such as dean, director, etc. from the same university. In Study 1 the most common reported form of scientific misconduct was honorary authorship. The majority of researchers (71%) reported that they had not violated ethical standards in the past; 3% admitted to scientific misconduct; 51% reported being were aware of colleagues’ scientific misconduct. A small positive correlation between perceived publication pressure and intention to engage in scientific misconduct in the future was found. In Study 2 more than half of the management (52%) reported being aware of researchers’ dishonest practices, the most frequent one of these being honorary authorship. As many as 71% of the participants report observing publication pressure in their subordinates. The primary conclusions are: (1) most scholars are convinced of their morality and predict that they will behave morally in the future; (2) scientific misconduct, particularly minor offenses such as honorary authorship, is frequently observed both by researchers (particularly in their colleagues) and by their managers; (3) researchers experiencing publication pressure report a willingness to engage in scientific misconduct in the future.
{"title":"Publish or be ethical? Publishing pressure and scientific misconduct in research","authors":"M. Paruzel-Czachura, Lidia Baran, Zbigniew Spendel","doi":"10.1177/1747016120980562","DOIUrl":"https://doi.org/10.1177/1747016120980562","url":null,"abstract":"The paper reports two studies exploring the relationship between scholars’ self-reported publication pressure and their self-reported scientific misconduct in research. In Study 1 the participants (N = 423) were scholars representing various disciplines from one big university in Poland. In Study 2 the participants (N = 31) were exclusively members of the management, such as dean, director, etc. from the same university. In Study 1 the most common reported form of scientific misconduct was honorary authorship. The majority of researchers (71%) reported that they had not violated ethical standards in the past; 3% admitted to scientific misconduct; 51% reported being were aware of colleagues’ scientific misconduct. A small positive correlation between perceived publication pressure and intention to engage in scientific misconduct in the future was found. In Study 2 more than half of the management (52%) reported being aware of researchers’ dishonest practices, the most frequent one of these being honorary authorship. As many as 71% of the participants report observing publication pressure in their subordinates. The primary conclusions are: (1) most scholars are convinced of their morality and predict that they will behave morally in the future; (2) scientific misconduct, particularly minor offenses such as honorary authorship, is frequently observed both by researchers (particularly in their colleagues) and by their managers; (3) researchers experiencing publication pressure report a willingness to engage in scientific misconduct in the future.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"17 1","pages":"375 - 397"},"PeriodicalIF":1.7,"publicationDate":"2020-11-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"90528159","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2020-11-02DOI: 10.1177/1747016120969743
V. Williamson, D. Murphy, C. Castro, E. Vermetten, R. Jetly, N. Greenberg
The need for research to advance scientific understanding must be balanced with ensuring the rights and wellbeing of participants are safeguarded, with some research topics posing more ethical quandaries for researchers than others. Moral injury is one such topic. Exposure to potentially morally injurious experiences can lead to significant distress, including post-traumatic stress disorder (PTSD), depression, and selfinjury. In this article, we discuss how the rapid expansion of research in the field of moral injury could threaten the wellbeing, dignity and integrity of participants. We also examine key guidance for carrying out ethically responsible research with participants’ rights to self-determination, confidentiality, non-maleficence and beneficence discussed in relation to the study of moral injury. We describe how investigations of moral injury are likely to pose several challenges for researchers including managing disclosures of potentially illegal acts, the risk of harm that repeated questioning about guilt and shame may pose to participant wellbeing in longitudinal studies, as well as the possible negative impact of exposure to vicarious trauma on researchers themselves. Finally, we offer several practical recommendations that researchers, research ethics committees and other regulatory bodies can take to protect participant rights, maximise the potential benefits of research outputs and ensure the field continues to expand in an ethically responsible way.
{"title":"Moral injury and the need to carry out ethically responsible research","authors":"V. Williamson, D. Murphy, C. Castro, E. Vermetten, R. Jetly, N. Greenberg","doi":"10.1177/1747016120969743","DOIUrl":"https://doi.org/10.1177/1747016120969743","url":null,"abstract":"The need for research to advance scientific understanding must be balanced with ensuring the rights and wellbeing of participants are safeguarded, with some research topics posing more ethical quandaries for researchers than others. Moral injury is one such topic. Exposure to potentially morally injurious experiences can lead to significant distress, including post-traumatic stress disorder (PTSD), depression, and selfinjury. In this article, we discuss how the rapid expansion of research in the field of moral injury could threaten the wellbeing, dignity and integrity of participants. We also examine key guidance for carrying out ethically responsible research with participants’ rights to self-determination, confidentiality, non-maleficence and beneficence discussed in relation to the study of moral injury. We describe how investigations of moral injury are likely to pose several challenges for researchers including managing disclosures of potentially illegal acts, the risk of harm that repeated questioning about guilt and shame may pose to participant wellbeing in longitudinal studies, as well as the possible negative impact of exposure to vicarious trauma on researchers themselves. Finally, we offer several practical recommendations that researchers, research ethics committees and other regulatory bodies can take to protect participant rights, maximise the potential benefits of research outputs and ensure the field continues to expand in an ethically responsible way.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"1 1","pages":"135 - 142"},"PeriodicalIF":1.7,"publicationDate":"2020-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"75822307","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2020-10-21DOI: 10.1177/1747016120966779
M. Ababneh, S. Al‐Azzam, K. Alzoubi, Abeer M. Rababa’h, S. A. Al Demour
In Jordan, research ethics committees exist in most health settings. However, little is known about Jordanian public views regarding the ethics of clinical research. This study aimed to evaluate Jordanian public understanding and attitudes about ethics in clinical research. A questionnaire was used to collect information that included demographics, public knowledge, and attitudes towards ethics in clinical research. It was administered via face-to-face interviews in two major cities in Jordan from 1st June to 15th August 2017. Of the 2315 respondents, 2.33% were found to have poor knowledge, 22.16% had fair knowledge, and 75.51% had good knowledge of ethics in clinical research. Furthermore, 75.81% of respondents had positive attitudes towards ethics in research. However, only 45.23% reported that they trust clinical researchers in Jordan. Even though a large majority of respondents were aware of key features of research ethics, efforts are needed to address negative perceptions and knowledge deficits.
{"title":"Understanding and attitudes of the Jordanian public about clinical research ethics","authors":"M. Ababneh, S. Al‐Azzam, K. Alzoubi, Abeer M. Rababa’h, S. A. Al Demour","doi":"10.1177/1747016120966779","DOIUrl":"https://doi.org/10.1177/1747016120966779","url":null,"abstract":"In Jordan, research ethics committees exist in most health settings. However, little is known about Jordanian public views regarding the ethics of clinical research. This study aimed to evaluate Jordanian public understanding and attitudes about ethics in clinical research. A questionnaire was used to collect information that included demographics, public knowledge, and attitudes towards ethics in clinical research. It was administered via face-to-face interviews in two major cities in Jordan from 1st June to 15th August 2017. Of the 2315 respondents, 2.33% were found to have poor knowledge, 22.16% had fair knowledge, and 75.51% had good knowledge of ethics in clinical research. Furthermore, 75.81% of respondents had positive attitudes towards ethics in research. However, only 45.23% reported that they trust clinical researchers in Jordan. Even though a large majority of respondents were aware of key features of research ethics, efforts are needed to address negative perceptions and knowledge deficits.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"107 1","pages":"228 - 241"},"PeriodicalIF":1.7,"publicationDate":"2020-10-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"80552614","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2020-10-08DOI: 10.1177/1747016120963160
Erin Mackenzie, Nathan Berger, K. Holmes, M. Walker
Adolescent populations have become increasingly accessible through online data collection methods. Online surveys are advantageous in recruiting adolescent participants and can be designed for adolescents to provide informed consent without the requirement of parental consent. This study sampled 338 Australian adolescents to participate in a low risk online survey on adolescents’ experiences and perceptions of their learning in science classes, without parental consent. Adolescents were recruited through Facebook and Instagram advertising. In order to judge potential participants’ capacity to consent, two multiple-choice questions about the consent process were required to be answered correctly prior to accessing the survey. This simple strategy effectively determined whether middle adolescents had the capacity to provide informed consent to participate in low risk online educational research.
{"title":"Online educational research with middle adolescent populations: Ethical considerations and recommendations","authors":"Erin Mackenzie, Nathan Berger, K. Holmes, M. Walker","doi":"10.1177/1747016120963160","DOIUrl":"https://doi.org/10.1177/1747016120963160","url":null,"abstract":"Adolescent populations have become increasingly accessible through online data collection methods. Online surveys are advantageous in recruiting adolescent participants and can be designed for adolescents to provide informed consent without the requirement of parental consent. This study sampled 338 Australian adolescents to participate in a low risk online survey on adolescents’ experiences and perceptions of their learning in science classes, without parental consent. Adolescents were recruited through Facebook and Instagram advertising. In order to judge potential participants’ capacity to consent, two multiple-choice questions about the consent process were required to be answered correctly prior to accessing the survey. This simple strategy effectively determined whether middle adolescents had the capacity to provide informed consent to participate in low risk online educational research.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"36 1","pages":"217 - 227"},"PeriodicalIF":1.7,"publicationDate":"2020-10-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"75173563","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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