Pub Date : 2022-07-01Epub Date: 2022-01-24DOI: 10.1177/15562646221075459
Frank G Preston, Yanda Meng, Yalin Zheng, James Hsuan, Kevin J Hamill, Austin G McCormick
This study determined the effectiveness of three deidentification methods: use of a) a black box to obscure facial landmarks, b) a letterbox view to display restricted facial landmarks and c) a half letterbox view. Facial images of well-known celebrities were used to create a series of decreasingly deidentified images and displayed to participants in a structured interview session. 55.5% were recognised when all facial features were covered using a black box, leaving only the hair and neck exposed. The letterbox view proved more effective, reaching over 50% recognition only once the periorbital region, eyebrows, and forehead were visible. The half letterbox was the most effective, requiring the nose to be revealed before recognition reached over 50%, and should be the option of choice where appropriate. These findings provide valuable information for informed consent discussions, and we recommend consent to publish forms should stipulate the deidentification method that will be used.
{"title":"Informed Consent In Facial Photograph Publishing: A Cross-sectional Pilot Study To Determine The Effectiveness Of Deidentification Methods.","authors":"Frank G Preston, Yanda Meng, Yalin Zheng, James Hsuan, Kevin J Hamill, Austin G McCormick","doi":"10.1177/15562646221075459","DOIUrl":"https://doi.org/10.1177/15562646221075459","url":null,"abstract":"<p><p>This study determined the effectiveness of three deidentification methods: use of a) a black box to obscure facial landmarks, b) a letterbox view to display restricted facial landmarks and c) a half letterbox view. Facial images of well-known celebrities were used to create a series of decreasingly deidentified images and displayed to participants in a structured interview session. 55.5% were recognised when all facial features were covered using a black box, leaving only the hair and neck exposed. The letterbox view proved more effective, reaching over 50% recognition only once the periorbital region, eyebrows, and forehead were visible. The half letterbox was the most effective, requiring the nose to be revealed before recognition reached over 50%, and should be the option of choice where appropriate. These findings provide valuable information for informed consent discussions, and we recommend consent to publish forms should stipulate the deidentification method that will be used.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9136482/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39850724","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
This study aims to investigate the knowledge and attitudes of participants and potential participants in clinical trials toward electronic informed consent. We conducted a survey-based cross-sectional study in Hunan Province, China in March 2021. A total of 547 respondents were included in this study. All questions in an 8-item survey section assessing participants' knowledge of electronic informed consent received correct answers from at least 70% of participants. In terms of attitude scores, most participants (86.3%) believed that electronic informed consent is more convenient than the paper-based version, and more than half (51.2%) believed that electronic informed consent could completely replace the paper-based version. Responses indicated that common concerns about electronic informed consent were its security and confidentiality, legal benefits, and implications for rights protection.
{"title":"Knowledge and Attitudes of Research Participants in China Toward Electronic Informed Consent in Clinical Trials: A Cross Sectional Study.","authors":"Zhanqing Hu, Chenxi Ouyang, Jessica Hahne, Kaveh Khoshnood, Jinqiang Zhang, Xiyu Liu, Ying Wu, Xiaomin Wang","doi":"10.1177/15562646221075884","DOIUrl":"https://doi.org/10.1177/15562646221075884","url":null,"abstract":"<p><p>This study aims to investigate the knowledge and attitudes of participants and potential participants in clinical trials toward electronic informed consent. We conducted a survey-based cross-sectional study in Hunan Province, China in March 2021. A total of 547 respondents were included in this study. All questions in an 8-item survey section assessing participants' knowledge of electronic informed consent received correct answers from at least 70% of participants. In terms of attitude scores, most participants (86.3%) believed that electronic informed consent is more convenient than the paper-based version, and more than half (51.2%) believed that electronic informed consent could completely replace the paper-based version. Responses indicated that common concerns about electronic informed consent were its security and confidentiality, legal benefits, and implications for rights protection.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9149068/pdf/nihms-1770674.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39866577","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-07-01DOI: 10.1177/15562646221078655
Rasha M Arabyat, Bashar R Qawasmeh, Sayer I Al-Azzam, Mohammad B Nusair, Karem H Alzoubi
Objective: To evaluate predictors of the use of anti-plagiarism detection tools (APTs) in higher education institutions.
Methods: An online survey based on the theory of planned behavior was sent to members of science faculties in Jordan. Multivariate Logistic regression was conducted to determine predictors of previous use of APTs, and multivariate linear regression to predict future intentions.
Results: A total of 173 faculty members completed the survey, with 78.13% indicating previous APTs use. Turnitin® (43%) and Ithenticate® (32.8%) were the most commonly used APTs. These tools were mainly used to evaluate papers before sending them to journals (65.5%) and to detect plagiarism in theses/dissertations (50.4%). Predictors of previous use were academic rank (p = 0.02) and perceived understanding of APT use (p = 0.043). Intentions for future use were predicted by attitudes (p < 0.001) and perceived behavioral control (p = 0.036).
Conclusion: The theory of planned behavior successfully predicted intentions to use APTs. The use of APTs should be encouraged to all faculty members and students.
{"title":"Faculty Members' Perceptions and Attitudes Towards Anti-Plagiarism Detection Tools: Applying the Theory of Planned Behavior.","authors":"Rasha M Arabyat, Bashar R Qawasmeh, Sayer I Al-Azzam, Mohammad B Nusair, Karem H Alzoubi","doi":"10.1177/15562646221078655","DOIUrl":"https://doi.org/10.1177/15562646221078655","url":null,"abstract":"<p><strong>Objective: </strong>To evaluate predictors of the use of anti-plagiarism detection tools (APTs) in higher education institutions.</p><p><strong>Methods: </strong>An online survey based on the theory of planned behavior was sent to members of science faculties in Jordan. Multivariate Logistic regression was conducted to determine predictors of previous use of APTs, and multivariate linear regression to predict future intentions.</p><p><strong>Results: </strong>A total of 173 faculty members completed the survey, with 78.13% indicating previous APTs use. Turnitin® (43%) and Ithenticate® (32.8%) were the most commonly used APTs. These tools were mainly used to evaluate papers before sending them to journals (65.5%) and to detect plagiarism in theses/dissertations (50.4%). Predictors of previous use were academic rank (p = 0.02) and perceived understanding of APT use (p = 0.043). Intentions for future use were predicted by attitudes (p < 0.001) and perceived behavioral control (p = 0.036).</p><p><strong>Conclusion: </strong>The theory of planned behavior successfully predicted intentions to use APTs. The use of APTs should be encouraged to all faculty members and students.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9992686/pdf/nihms-1870874.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9409624","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-07-01Epub Date: 2021-10-14DOI: 10.1177/15562646211047163
M W Kalichman, M L Devereaux, D K Plemmons
Over the past 30 years, the scientific community has been increasingly challenged to provide the next generation of researchers with training in responsible conduct of research (RCR). Although RCR courses, workshops, and seminars are now routinely taught internationally, there is little uniformity in goals, content, pedagogy, duration, class size, or methods of assessment. The result is a mixed picture of effectiveness. In this manuscript, we describe goals, rationales, and features for a course tested and revised through well over 100 iterations. Based on our experience and that of others with whom we have shared this model, we propose this course as one that RCR instructors might readily and successfully adopt or adapt.
{"title":"A Course for Teaching and Learning About the Responsible Conduct of Research.","authors":"M W Kalichman, M L Devereaux, D K Plemmons","doi":"10.1177/15562646211047163","DOIUrl":"https://doi.org/10.1177/15562646211047163","url":null,"abstract":"<p><p>Over the past 30 years, the scientific community has been increasingly challenged to provide the next generation of researchers with training in responsible conduct of research (RCR). Although RCR courses, workshops, and seminars are now routinely taught internationally, there is little uniformity in goals, content, pedagogy, duration, class size, or methods of assessment. The result is a mixed picture of effectiveness. In this manuscript, we describe goals, rationales, and features for a course tested and revised through well over 100 iterations. Based on our experience and that of others with whom we have shared this model, we propose this course as one that RCR instructors might readily and successfully adopt or adapt.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9008073/pdf/nihms-1737652.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39519167","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-07-01Epub Date: 2022-01-24DOI: 10.1177/15562646211072503
Research education for a large health network is a challeng-ing business. Our audience is diverse, large, and includes a myriad of researchers, staff, and administrators with varying levels of experience. We offer a host of educational opportunities and were interested in the researchers ’ perspectives on their educational needs and wants. Background In response to the COVID-19 pandemic and suspension of in-person research, Teachers College Institutional Review Board (TC IRB) sought to determine how research submissions were impacted over the course of the 2020-2021 aca-demic year. We developed a self-study to gauge the needs and concerns of researchers preparing for ramp-up efforts. Over the past year, investigators at our psychiatric research institution shifted focus to investigate the effects of the pandemic related to mental illness. We examined how many (1) new studies and (2) modi fi cations of existing studies were submitted to assess the effects of the pandemic on individuals with psychiatric disorders.
{"title":"AER Conference poster abstracts in JERHRE.","authors":"","doi":"10.1177/15562646211072503","DOIUrl":"https://doi.org/10.1177/15562646211072503","url":null,"abstract":"Research education for a large health network is a challeng-ing business. Our audience is diverse, large, and includes a myriad of researchers, staff, and administrators with varying levels of experience. We offer a host of educational opportunities and were interested in the researchers ’ perspectives on their educational needs and wants. Background In response to the COVID-19 pandemic and suspension of in-person research, Teachers College Institutional Review Board (TC IRB) sought to determine how research submissions were impacted over the course of the 2020-2021 aca-demic year. We developed a self-study to gauge the needs and concerns of researchers preparing for ramp-up efforts. Over the past year, investigators at our psychiatric research institution shifted focus to investigate the effects of the pandemic related to mental illness. We examined how many (1) new studies and (2) modi fi cations of existing studies were submitted to assess the effects of the pandemic on individuals with psychiatric disorders.","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39851335","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-07-01Epub Date: 2022-02-28DOI: 10.1177/15562646221081267
Erika Blacksher, Susan Brown Trinidad, R Brian Woodbury, Scarlett E Hopkins, Erica L Woodahl, Bert B Boyer, Wylie Burke, Vanessa Hiratsuka
Deliberative democratic engagement is used around the globe to gather informed public input on contentious collective questions. Yet, rarely has it been used to convene individuals exclusively from Indigenous communities. The relative novelty of using this approach to engage tribal communities and concerns about diversity and inequities raise important methodological questions. We describe the design and quality outcomes for a 2.5-day deliberation that elicited views of American Indian and Alaska Native (AIAN) leaders about the potential value and ethical conduct of precision medicine research (PMR), an emerging approach to research that investigates the health effects of individual genetic variation in tandem with variation in health-relevant practices, social determinants, and environmental exposures. The event met key goals, such as relationship and rapport formation, cross-site learning, equality of opportunity to participate, and respect among participants in the context of disagreement.
{"title":"Tribal Deliberations about Precision Medicine Research: Addressing Diversity and Inequity in Democratic Deliberation Design and Evaluation.","authors":"Erika Blacksher, Susan Brown Trinidad, R Brian Woodbury, Scarlett E Hopkins, Erica L Woodahl, Bert B Boyer, Wylie Burke, Vanessa Hiratsuka","doi":"10.1177/15562646221081267","DOIUrl":"10.1177/15562646221081267","url":null,"abstract":"<p><p>Deliberative democratic engagement is used around the globe to gather informed public input on contentious collective questions. Yet, rarely has it been used to convene individuals exclusively from Indigenous communities. The relative novelty of using this approach to engage tribal communities and concerns about diversity and inequities raise important methodological questions. We describe the design and quality outcomes for a 2.5-day deliberation that elicited views of American Indian and Alaska Native (AIAN) leaders about the potential value and ethical conduct of precision medicine research (PMR), an emerging approach to research that investigates the health effects of individual genetic variation in tandem with variation in health-relevant practices, social determinants, and environmental exposures. The event met key goals, such as relationship and rapport formation, cross-site learning, equality of opportunity to participate, and respect among participants in the context of disagreement.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9173705/pdf/nihms-1777095.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9463888","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
A "gatekeeper" controls access to an organization; "gatekeeper approval" is often needed before external research can take place within an organization. We explore the need for gatekeeper approval for research with university staff employing, as a case study, a project which collected data in Australia. This case study addresses known issues, seemingly rarely addressed in the literature. The Human Research Ethics Committee (HREC)'s requirement for approval from individual universities to approach their staff brought significant consequences, exacerbated by the lack of university procedures for such approvals. Simultaneously, since invitations could legitimately be distributed via other avenues, such approval was superfluous. We recommend the HREC's blanket requirement for institutional approval instead be considered on a case-by-case basis depending on the risk of the research, and perhaps waived for low-risk research where participants are able to provide informed consent, and that universities establish processes to deal with requests from external researchers.
{"title":"Seeking Approval from Universities to Research the Views of Their Staff. Do Gatekeepers Provide a Barrier to Ethical Research?","authors":"Katherine Christian, Carolyn Johnstone, Jo-Ann Larkins, Wendy Wright","doi":"10.1177/15562646211068316","DOIUrl":"https://doi.org/10.1177/15562646211068316","url":null,"abstract":"<p><p>A \"gatekeeper\" controls access to an organization; \"gatekeeper approval\" is often needed before external research can take place within an organization. We explore the need for gatekeeper approval for research with university staff employing, as a case study, a project which collected data in Australia. This case study addresses known issues, seemingly rarely addressed in the literature. The Human Research Ethics Committee (HREC)'s requirement for approval from individual universities to approach their staff brought significant consequences, exacerbated by the lack of university procedures for such approvals. Simultaneously, since invitations could legitimately be distributed via other avenues, such approval was superfluous. We recommend the HREC's blanket requirement for institutional approval instead be considered on a case-by-case basis depending on the risk of the research, and perhaps waived for low-risk research where participants are able to provide informed consent, and that universities establish processes to deal with requests from external researchers.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39786104","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Ethics guidance recommends that researchers engage stakeholders and that RECs review research for such engagement. The ethics review process may present a unique opportunity to support stakeholder engagement practices for HIV prevention studies. We conducted 28 interviews with experts from 12 countries to explore this issue, and analyzed the data using Thematic Analysis. We found that the value of engagement and review processes was strongly endorsed. However, we identified 3 major thematic complexities, namely: "Tokenism" where processes risk being "tick-box"; "Toxicity", where practices may inadvertently have negative consequences; and "Tailoring", where processes need careful variation in intensity. We make recommendations for how these "Ts" can be addressed during the review process to help contribute to thoughtful review of meaningful stakeholder engagement in research.
{"title":"\"<i>It's Almost as if Stakeholder Engagement is the Annoying 'Have-to-do'…</i>\": Can Ethics Review Help Address the \"3 Ts\" of Tokenism, Toxicity, and Tailoring in Stakeholder Engagement?","authors":"Abigail Wilkinson, Catherine Slack, Siyabonga Thabethe, Jessica Salzwedel","doi":"10.1177/15562646221078415","DOIUrl":"https://doi.org/10.1177/15562646221078415","url":null,"abstract":"<p><p>Ethics guidance recommends that researchers engage stakeholders and that RECs review research for such engagement. The ethics review process may present a unique opportunity to support stakeholder engagement practices for HIV prevention studies. We conducted 28 interviews with experts from 12 countries to explore this issue, and analyzed the data using Thematic Analysis. We found that the value of engagement and review processes was strongly endorsed. However, we identified 3 major thematic complexities, namely: \"Tokenism\" where processes risk being \"tick-box\"; \"Toxicity\", where practices may inadvertently have negative consequences; and \"Tailoring\", where processes need careful variation in intensity. We make recommendations for how these \"Ts\" can be addressed during the review process to help contribute to thoughtful review of meaningful stakeholder engagement in research.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/13/ef/10.1177_15562646221078415.PMC9136363.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39799719","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-07-01Epub Date: 2021-10-06DOI: 10.1177/15562646211046091
Houng Chien Tan, Jo Ann Ho, Risidaxshinni Kumarusamy, Murali Sambasivan
Given the sensitive nature of ethics research, the presence of social desirability bias (SDB) threatens the validity of research findings. As ethics studies often overlook this bias, we aimed to provide evidence that SDB varies across individual and situational factors. We thus investigated the influence of socio-demographic factors and survey modes on SDB. A total of 348 working adults were randomly chosen to participate in either an on-line or off-line survey containing eight versions of the Marlowe-Crowne Social Desirability (MCSD) scale. The reliabilities for the eight versions ranged from 0.35 to 0.81. Statistical tests revealed that different socio-demographic factors influence different versions of the MCSD scale. The results also showed that using on-line surveys minimizes SDB. This study provides practical implications and suggestions for future research.
{"title":"Measuring social desirability bias: Do the full and short versions of the Marlowe-Crowne Social Desirability scale matter?","authors":"Houng Chien Tan, Jo Ann Ho, Risidaxshinni Kumarusamy, Murali Sambasivan","doi":"10.1177/15562646211046091","DOIUrl":"https://doi.org/10.1177/15562646211046091","url":null,"abstract":"<p><p>Given the sensitive nature of ethics research, the presence of social desirability bias (SDB) threatens the validity of research findings. As ethics studies often overlook this bias, we aimed to provide evidence that SDB varies across individual and situational factors. We thus investigated the influence of socio-demographic factors and survey modes on SDB. A total of 348 working adults were randomly chosen to participate in either an on-line or off-line survey containing eight versions of the Marlowe-Crowne Social Desirability (MCSD) scale. The reliabilities for the eight versions ranged from 0.35 to 0.81. Statistical tests revealed that different socio-demographic factors influence different versions of the MCSD scale. The results also showed that using on-line surveys minimizes SDB. This study provides practical implications and suggestions for future research.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39488572","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-07-01Epub Date: 2022-02-10DOI: 10.1177/15562646221076764
Astrid Berner-Rodoreda, Shannon McMahon, Nir Eyal, Puspita Hossain, Atonu Rabbani, Mrittika Barua, Malabika Sarker, Emmy Metta, Elia Mmbaga, Melkizedeck Leshabari, Daniel Wikler, Till Bärnighausen
Individual informed consent is a central requirement for clinical research on human subjects, yet whether and how consent requirements should apply to health policy experiments (HPEs) remains unclear. HPEs test and evaluate public health policies prior to implementation. We interviewed 58 health experts in Tanzania, Bangladesh and Germany on informed consent requirements for HPEs. Health experts across all countries favored a strong evidence base, prior information to the affected populations, and individual consent for 'risky' HPEs. Differences pertained to individual risk perception, how and when consent by group representatives should be obtained and whether HPEs could be treated as health policies. The study adds to representative consent options for HPEs, yet shows that more research is needed in this field - particularly in the present Covid-19 pandemic which has highlighted the need for HPEs nationally and globally.
{"title":"Consent Requirements for Testing Health Policies: An Intercontinental Comparison of Expert Opinions.","authors":"Astrid Berner-Rodoreda, Shannon McMahon, Nir Eyal, Puspita Hossain, Atonu Rabbani, Mrittika Barua, Malabika Sarker, Emmy Metta, Elia Mmbaga, Melkizedeck Leshabari, Daniel Wikler, Till Bärnighausen","doi":"10.1177/15562646221076764","DOIUrl":"10.1177/15562646221076764","url":null,"abstract":"<p><p>Individual informed consent is a central requirement for clinical research on human subjects, yet whether and how consent requirements should apply to health policy experiments (HPEs) remains unclear. HPEs test and evaluate public health policies prior to implementation. We interviewed 58 health experts in Tanzania, Bangladesh and Germany on informed consent requirements for HPEs. Health experts across all countries favored a strong evidence base, prior information to the affected populations, and individual consent for 'risky' HPEs. Differences pertained to individual risk perception, how and when consent by group representatives should be obtained and whether HPEs could be treated as health policies. The study adds to representative consent options for HPEs, yet shows that more research is needed in this field - particularly in the present Covid-19 pandemic which has highlighted the need for HPEs nationally and globally.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9136368/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47576527","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}