Journal of Empirical Research on Human Research Ethics最新文献

Recruitment Techniques Used for Clinical Trials and the Potential Impact of Nudges: Qualitative Interview Study with Recruiters. 用于临床试验的招聘技术和轻推的潜在影响：招聘人员的定性访谈研究。

IF 1.7 4区哲学

Journal of Empirical Research on Human Research Ethics Pub Date : 2025-05-20 DOI: 10.1177/15562646251341655

Molly Volkmar, Jewels Watts, Lauren Kaiser-Jackson, Ben Schwan, Cathy Wolfsfeld, Eric Kodish, Aaron J Goldenberg, Jessica Berg, Erin Rothwell, Maxwell Mehlman, Kimberly Kaphingst

{"title":"Recruitment Techniques Used for Clinical Trials and the Potential Impact of Nudges: Qualitative Interview Study with Recruiters.","authors":"Molly Volkmar, Jewels Watts, Lauren Kaiser-Jackson, Ben Schwan, Cathy Wolfsfeld, Eric Kodish, Aaron J Goldenberg, Jessica Berg, Erin Rothwell, Maxwell Mehlman, Kimberly Kaphingst","doi":"10.1177/15562646251341655","DOIUrl":"https://doi.org/10.1177/15562646251341655","url":null,"abstract":"While clinical trials are essential to improving public health, little research has examined the range of recruitment techniques used or whether they involve behavioral nudges. Behavioral nudges have been defined as \"any aspect of the choice architecture [the manner in which options are presented] that alters people's behavior in a predictable way without forbidding any options or significantly changing their economic incentives\"; these may influence individuals' autonomy in deciding to participate. To investigate, the study team conducted 39 semi-structured interviews with clinical trial recruiters at two academic medical centers, asking about their recruitment techniques and any perceived ethical concerns. Through inductive qualitative analysis, five main themes emerged: impact of relationships (among recruiters, healthcare teams, and participants), financial compensation, community benefit, study risks and benefits, and personalized study information. The study then assessed whether these techniques were seen as nudges and explored their ethical implications for informed decision-making.","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":" ","pages":"15562646251341655"},"PeriodicalIF":1.7,"publicationDate":"2025-05-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144103046","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}

引用次数: 0

Perspectives of Research Ethics Committees on the Challenges of Human Genomic Research Participation in Ethiopia. 研究伦理委员会对参与埃塞俄比亚人类基因组研究的挑战的看法。

IF 1.7 4区哲学

Journal of Empirical Research on Human Research Ethics Pub Date : 2025-05-13 DOI: 10.1177/15562646251339221

Herani Sahlu Dembu, Hailemichael Getachew, Polly J Price, Jessica Sales, Liya Wassie

引用次数: 0

Informed Consent in Vulnerable Populations: The Case of Detained Persons with Attention Deficit Hyperactivity Disorder. 弱势群体的知情同意：患有注意缺陷多动障碍的被拘留者的案例。

IF 1.7 4区哲学

Journal of Empirical Research on Human Research Ethics Pub Date : 2025-05-08 DOI: 10.1177/15562646251340474

Stéphanie Baggio, Leonel da Cunha Gonçalves, Patrick Heller, Hans Wolff, Laurent Gétaz

{"title":"Informed Consent in Vulnerable Populations: The Case of Detained Persons with Attention Deficit Hyperactivity Disorder.","authors":"Stéphanie Baggio, Leonel da Cunha Gonçalves, Patrick Heller, Hans Wolff, Laurent Gétaz","doi":"10.1177/15562646251340474","DOIUrl":"https://doi.org/10.1177/15562646251340474","url":null,"abstract":"Informed consent (IC) is a critical component in research involving human participants, yet participants' understanding of consent information remains underexplored, particularly in vulnerable populations. This study aimed to assess whether attention deficit hyperactivity disorder (ADHD) was associated with understanding and willingness to sign the IC among detained individuals. This secondary analysis used data from a randomised trial conducted in a Swiss prison (n = 183). Statistical analyses included regression models. There was no significant difference in understanding of the IC between the groups with and without positive screening for ADHD (mean score = 5.2 vs. 4.9 respectively, p = .468). Acceptance of signing the IC was comparable between groups (83.3% ADHD vs. 84.9% non-ADHD, p = .814). Our findings suggest that ADHD did not significantly impair the understanding of the IC or the decision to participate in research among detained individuals. However, the level of understanding was overall low, highlighting the need for tailored approaches to improve understanding in vulnerable populations.","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":" ","pages":"15562646251340474"},"PeriodicalIF":1.7,"publicationDate":"2025-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144041451","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}

引用次数: 0

An Analysis of Institutional Review Board Policies for Enrollment of Adults with Impaired or Uncertain Decision-Making Capacity. 机构审查委员会对决策能力受损或不确定成人入学的政策分析。

IF 1.7 4区哲学

Journal of Empirical Research on Human Research Ethics Pub Date : 2025-05-08 DOI: 10.1177/15562646251338183

Emily Nguyen, David Appiah, Ari Ne'eman, Min Shi, Barbara E Bierer, Willyanne DeCormier Plosky, David B Resnik

{"title":"An Analysis of Institutional Review Board Policies for Enrollment of Adults with Impaired or Uncertain Decision-Making Capacity.","authors":"Emily Nguyen, David Appiah, Ari Ne'eman, Min Shi, Barbara E Bierer, Willyanne DeCormier Plosky, David B Resnik","doi":"10.1177/15562646251338183","DOIUrl":"https://doi.org/10.1177/15562646251338183","url":null,"abstract":"Background: Unwarranted exclusion of people with uncertain or impaired decision-making capacity from participation in research violates principles of justice and fairness and adversely impacts the health and welfare of these populations. Methods: We conducted a cross-sectional study of institutional review board (IRB) policies for investigators and IRB members at 94 top-funded U.S. research institutions to better understand the guidance they provide to investigators who work with populations that have a wide range in decisional capacity. We collected data from publicly available websites and used deductive and inductive methods to develop our coding framework. Results: We found that 41.5% of institutions had policies that require exclusion of people with uncertain or impaired decision-making capacity unless inclusion is scientifically justified. Only 5.3% had policies that require inclusion of these populations unless exclusion is scientifically justified. Eligibility criteria depended upon the risks of research in 54.3% of policies. Guidance on obtaining consent or assent was provided in 77.7% of policies and 44.7% provided guidance on assessing decision-making capacity. 30.9% of policies required that the IRB include a member who is knowledgeable of the needs and concerns of people with uncertain or impaired decision-making capacity when it reviews research pertaining to that population. Conclusion: Some IRB policies at U.S. research institutions may be unfairly excluding people with uncertain or impaired decision-making from research participation. Institutions should review their IRB policies to ensure that these policies protect adults with uncertain or impaired decision-making capacity from harm but also do not exclude them from research unfairly.","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":" ","pages":"15562646251338183"},"PeriodicalIF":1.7,"publicationDate":"2025-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144051084","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}

引用次数: 0

Ethical Issues in Glaucoma Genomic Research: Perspectives and Preferences of Potential Research Participants in Enugu, Southeast Nigeria. 青光眼基因组研究中的伦理问题：尼日利亚东南部埃努古潜在研究参与者的观点和偏好。

IF 1.7 4区哲学

Journal of Empirical Research on Human Research Ethics Pub Date : 2025-05-02 DOI: 10.1177/15562646251337654

Nkechinyere J Uche, Onochie I Okoye, Emmanuel R Ezeome

{"title":"Ethical Issues in Glaucoma Genomic Research: Perspectives and Preferences of Potential Research Participants in Enugu, Southeast Nigeria.","authors":"Nkechinyere J Uche, Onochie I Okoye, Emmanuel R Ezeome","doi":"10.1177/15562646251337654","DOIUrl":"https://doi.org/10.1177/15562646251337654","url":null,"abstract":"Genomic research is challenged by many ethical issues, especially in low-resource locations. To determine the views and perspectives of research participants regarding these ethical challenges, two hundred and eight potential research participants were interviewed. Views regarding basic genetic knowledge, return of research results and incidental findings and secondary data use were elicited. Overall, 87.5% of participants were aware of genomic research. About 95.7% of participants had poor basic genetic knowledge, while 15.4% had an understanding of the concept of genetic research. Most participants (92.3% and 82.2% respectively) expressed preference for return of research results and incidental findings. One hundred and forty-nine participants (71.6%) expressed reservation regarding future unspecified use of their blood sample and medical information while 76.4% expressed concern regarding data sharing with other researchers. Optimal consideration should be given to participants' preferences in the design of genomic research protocols.","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":" ","pages":"15562646251337654"},"PeriodicalIF":1.7,"publicationDate":"2025-05-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144065102","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}

引用次数: 0

Fogarty-Funded Research Ethics Training Programs in Eastern Europe. 福格蒂资助的东欧研究伦理培训项目。

IF 1.7 4区哲学

Journal of Empirical Research on Human Research Ethics Pub Date : 2025-04-13 DOI: 10.1177/15562646251332709

Emily E Anderson, Horatiu A Colosi, Ivanka Markovic, Oksana Sulaieva, Vladyslava Kachkovska, Vida Jeremic Stojkovic, Rosamond Rhodes

引用次数: 0

Fogarty-Funded Research Ethics Education in Latin America and the Caribbean: Progress Despite Ongoing Challenges. 福加蒂资助的拉丁美洲和加勒比地区的研究伦理教育：尽管面临持续挑战，但仍取得进展。

IF 1.7 4区哲学

Journal of Empirical Research on Human Research Ethics Pub Date : 2025-03-31 DOI: 10.1177/15562646251325621

Timothy Daly, Ignacio Mastroleo, Luis L García Valiña, Irene Melamed, María Florencia Santi, Theresa J Ochoa, Manuela Fernández Pinto, Paul J Cummins, Bernardo García Camino, Cheryl Macpherson, Elizabeth Heitman, Florencia Luna

引用次数: 0

Enhancing Research Ethics Capacity in Asia: Fogarty International Center Supported Initiatives in India, Malaysia, Myanmar, and Pakistan. 加强亚洲的研究伦理能力：福格蒂国际中心支持印度、马来西亚、缅甸和巴基斯坦的项目。

IF 1.7 4区哲学

Journal of Empirical Research on Human Research Ethics Pub Date : 2025-03-17 DOI: 10.1177/15562646251323133

Nishakanthi Gopalan, Robyna Irshad Khan, Henry J Silverman, Jeremy Sugarman, Vina Vaswani

{"title":"Enhancing Research Ethics Capacity in Asia: Fogarty International Center Supported Initiatives in India, Malaysia, Myanmar, and Pakistan.","authors":"Nishakanthi Gopalan, Robyna Irshad Khan, Henry J Silverman, Jeremy Sugarman, Vina Vaswani","doi":"10.1177/15562646251323133","DOIUrl":"https://doi.org/10.1177/15562646251323133","url":null,"abstract":"Several Asian countries, including India, Malaysia, Myanmar, and Pakistan, face challenges aligning rapid healthcare and biomedical research growth with necessary ethics oversight. To help address this, the Fogarty International Center of the United States National Institutes of Health funded initiatives to enhance research ethics capacities in these countries. In India, the Yenepoya University's Master's in Research Ethics program was established in collaboration with Monash University. In Malaysia, the Master of Health Research Ethics (MOHRE) program, based at Universiti Malaya, was developed in collaboration with the Johns Hopkins University. In Myanmar, a Diploma in Research Methodology and Research Ethics (DipRMRE) was introduced in cooperation with the University of Maryland Baltimore. In Pakistan, a Master of Bioethics (MBE) program was designed to address the country's unique ethical challenges in healthcare and research. Graduates from these programs have significantly contributed to health research and policy, enhancing research ethics infrastructure across these diverse Asian countries.","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":" ","pages":"15562646251323133"},"PeriodicalIF":1.7,"publicationDate":"2025-03-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143651688","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}

引用次数: 0

Description and Impact of the 20-Year Fogarty International Center/NIH Middle East Research Ethics Training Initiative. 福格蒂国际中心/美国国立卫生研究院中东研究伦理培训计划 20 年的描述和影响。

IF 1.7 4区哲学

Journal of Empirical Research on Human Research Ethics Pub Date : 2025-03-02 DOI: 10.1177/15562646251316711

Latifa Adarmouch, Alya Elgamri, Nivine Abbas, Hany Sleem, Henry Silverman

{"title":"Description and Impact of the 20-Year Fogarty International Center/NIH Middle East Research Ethics Training Initiative.","authors":"Latifa Adarmouch, Alya Elgamri, Nivine Abbas, Hany Sleem, Henry Silverman","doi":"10.1177/15562646251316711","DOIUrl":"https://doi.org/10.1177/15562646251316711","url":null,"abstract":"The Middle East Research Ethics Training Initiative (MERETI), established in 2004 with funding from the Fogarty International Center at the NIH, aimed to enhance research ethics capacity in the Middle East North Africa (MENA) region. Initially focused on Egypt, MERETI expanded to other Arab countries, providing advanced training in international research ethics to over 100 individuals. The program emphasized additional skills in research methodology, pedagogy, scientific writing, and leadership. MERETI's training evolved from a one-year program to a two-year model incorporating sequential hybrid/blended and asynchronous online components and, eventually, included a fully online 12-credit graduate certificate in research ethics. The program's impact is demonstrated through the professional achievements of its trainees, which included publishing in peer-reviewed journals, assuming key roles in national research ethics committees and ministries of health and contributing to the development of ethics research practices in their respective countries. MERETI also fostered a sustainable Egyptian network of research ethics committees.","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":" ","pages":"15562646251316711"},"PeriodicalIF":1.7,"publicationDate":"2025-03-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143537899","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}

引用次数: 0

Improving Comprehension of Consent Forms in Online Research: An Empirical Test of Four Interventions. 提高在线研究中对同意书的理解：对四种干预措施的实证检验。

IF 1.7 4区哲学

Journal of Empirical Research on Human Research Ethics Pub Date : 2025-02-01 Epub Date: 2025-03-14 DOI: 10.1177/15562646251321132

Naomi K Grant, Leah K Hamilton, Jenalyn M Ormita

{"title":"Improving Comprehension of Consent Forms in Online Research: An Empirical Test of Four Interventions.","authors":"Naomi K Grant, Leah K Hamilton, Jenalyn M Ormita","doi":"10.1177/15562646251321132","DOIUrl":"10.1177/15562646251321132","url":null,"abstract":"Informed consent is a guiding ethical principle when conducting research involving human participants. Yet, consent forms are often skimmed or ignored, jeopardizing informed consent. In two experiments, we test four interventions designed to encourage participants to read online consent forms more carefully. Experiment 1 employed a 2 (length: short or long) by 2 (timing: fixed or free) by 2 (quiz: present or absent) between-participants design. We measured instruction-following and comprehension of the consent form. Results showed that fixed timing and a quiz led to greater instruction-following, but consent form length had no effect. Experiment 2 employed a 2 (length: short or long) by 3 (delivery format: live, audiovisual, standard written) between-participants design. Once again, length had no effect, but both live and audiovisual formats increased instruction-following and comprehension. We recommend that researchers consider using fixed timing, adding a quiz, and/or using alternative delivery formats to help participants make an informed decision.","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":" ","pages":"46-54"},"PeriodicalIF":1.7,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12048739/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143626714","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}

引用次数: 0